Re: I'm new here

[Guest guest]

>

>

>Hi Cindy

My name is Donna...Im sorry to hear that your son is having so much

pain at such an early age. Your description of his symptoms sound

like its possible since everyone is different.

I hope that he is able to find some relief in the near future and

please feel free to have him post here as well.

Many of the people on here are knowledgeable and always willing to

help when they can.

So, welcome to our charming group of peeps...pull up a chair and make

yourself comfy.

Hugs

Donna

[Guest guest]

Hi Cindy..Welcome to the group.

My name is Ginny and I am 35 yrs old and a single mom of 2 children. My daughter is 18 yrs old and my son is 9 yrs old. I have Elhers-Danlos syndrome. I also have RSD, fibromyalgia, 3 different types of arthritis (osteo, juvenal rheumatoid, and psoriatic), Raynaud's syndrome, Sjogren's syndrome, degerative disc disorder, and a herniated disc. I have problems with my knees since I was 10 yrs old...they would dislocate walking up and down stairs. I had surgeries on my right knee starting at age 15. They want to do a total knee replacement on my right knee but I refuse to let them do any more surgeries unless I am unable to walk at all. As you know with Elhers-Danlos syndrome some secondary diseases come along with it like fibromyalgia and different arthritises. Elhers-Danlos can cause severe pain on it's own also. But just because you have EDS not every pain or problem is related to it. RSD can affect everyone

differently..and you don't need all the symptoms to be dx with RSD just some symptoms. Unlike alot of diseases RSD is a clinical dx there are no tests to confirm it..unlike with EDS. To answer some of your questions no you don't always need swelling to have RSD..it is a common symptom though..I know I have swelling in my affected areas and then sometimes swelling in supposedly not affected areas. It doesn't have to be a burning pain..even though i do have some burning pain most of my pain is a shooting stabbing pain. RSD affects the autonomic nervous system...so yes it usually does cause autonomic dysfunctions...I have excessive hair growth on my hand, wrist and arm..some have hair loss. I get sweats even in 20 degree weather and chills in 90 degree weather for no reason. I have muscle spasms sometimes and goosebumps even when I am warm. Sometimes the pain can stay in one spot...mine did for awhile and now I have full upper body RSD and my

left leg is also affected. Sometimes the narcotics do help with the pain..I am on morphine 15 mg twice a day and percs as needed but i also take neurontin to block the nerve pain. My pain is 24/7 but somedays better then others..you can have good days and bad days...but I have never been lower then a 4 in pain level for over a yr now. It sounds like the drs are talking about implanting an SCS (spinal chord stimulator) most of the time they do a trial before doing a permanent SCS..if the trial gives him some relief from the pain then they would move ford with the permanent SCS and confirm the RSD dx...if it doesn't give him some relief then they wouldn't implant the SCS and even though the trial did not work it still could be RSD...not every treatment works for everyone. I am sorry your son at such a young age is going through all of this pain...he does seem to be on alot of pain meds and I am sorry nothing is helping the pain decrease. Is he on

neurontin, topomax or any thing that may block the nerve pain? Did he dislocate his knee or have any other knee injury prior to the onset of pain. I know with EDS my joints will dislocate even in my sleep so he may not be aware of dislocating his knee. I hope this helps answer some questions you may have...feel free to ask more...it's a hard disease to understand because it never affects everyone the same way and the treatments don't always help everyone the same way either. Hope your son gets some relief from the pain..and you get some needed answers and help to relieve the stress you must be feeling from all of this...Hugs..Ginny

Hello all, I'm new here and sure could use some help and information. I have a 17 year old son that has been in horrible pain for 3 years now. He has Ehlers Danlos Syndrome (EDS) and Chiari. But these two DX do not explain his extreme pain. His Right knee has hurt terribly. It has kept him in bed for 3 years. He had been a high school athlete, and good student, then one day, for no reason the R knee pain began. Nothing has been found wrong with the knee. He is on high dose narcotics, which barely take the edge off the pain. 2 Doctors have recently said they believe he has RSD. From what I have read on it, I'm not sure I agree. His pain is not burning, the joint does not swell, it is cool to the touch at all times, The skin can be touched, but a gentle examination is

painful. The pain follows an exact crescent shape line on the outside of the knee cap. It is there 24 hours aday. The rest of his body is a bit sensitive to touch. I'm a massage therapist and I can no longer give him massages, but he can be touched gently without pain. Does this sound like it could be RSD? He has an electric wheel chair now in hopes that he can attend school. But his sleep issues and exhaustion, memory problems, and feeling like caca , has stopped him from attending for 3 years now. Some of these things sound like it could be RSD, but some don't. Plus many of these symptoms can be attributed to his Ehlers Danlos Syndrome. An implant has been talked about to help stop this pain, but that seems so drastic, permanent. But all these narcotics can't be good for him either. I could really use so help trying to make since out of all this. Thanks,

Cindy

[Guest guest]

Welcome Cindy,

I don't know if I can offer any advice or any words of wisdom. But I can tell you that this is the best site to come to, there are many wise women and men, who can offer the best advice and any other words of wisdom.

So pull up a chair and jump right in.

Lin

-------Original Message-------

Hello all, I'm new here and sure could use some help and information. I have a 17 year old son that has been in horrible pain for 3 years now. He has Ehlers Danlos Syndrome (EDS) and Chiari. But these two DX do not explain his extreme pain. His Right knee has hurt terribly. It has kept him in bed for 3 years. He had been a high school athlete, and good student, then one day, for no reason the R knee pain began. Nothing has been found wrong with the knee. He is on high dose narcotics, which barely take the edge off the pain. 2 Doctors have recently said they believe he has RSD. From what I have read on it, I'm not sure I agree. His pain is not burning, the joint does not swell, it is cool to the touch at all times, The skin can be touched, but a gentle examination is painful. The pain follows an exact crescent shape line on the outside of the knee cap. It is there 24 hours aday. The rest of his body is a bit sensitive to touch. I'm a massage therapist and I can no longer give him massages, but he can be touched gently without pain. Does this sound like it could be RSD? He has an electric wheel chair now in hopes that he can attend school. But his sleep issues and exhaustion, memory problems, and feeling like caca , has stopped him from attending for 3 years now. Some of these things sound like it could be RSD, but some don't. Plus many of these symptoms can be attributed to his Ehlers Danlos Syndrome. An implant has been talked about to help stop this pain, but that seems so drastic, permanent. But all these narcotics can't be good for him either. I could really use so help trying to make since out of all this. Thanks, Cindy

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[Guest guest]

Thank you all for the warm welcome. I see this board is as busy as my EDS board. I wil have a hard time keeping up with all the emails. <G> Your answers can in just in time for me to talk to the primary this morning. He isn't convinced that Dyaln has RSD, but will look into it further. The Doc does have several reports from other specialists that have stated they feel he may have it. The primary wants us to see an edrocronologist and another ortho Dr before he goes futher looking into the RSD. He said he would send us to a nuerologist for that, is that the right type of Dr for RSD? Today the Dr raised his meds again. He'll now take 230 mg MsContin 3 times a day totaling 690 mg. and moved up the Actiq to 800 mcg. Absolutly nothing so far has gotten Dylan under an 8 in pain. Hopefully this will help.

Getting my son help has been very hard. No one wants to put a teenager on narctotics, and no one wants to see him suffer like this. EDS can be a very painful disorder, but his pain is not normal with EDS. I took him to the National Institute of Health in land finally, after getting no help at home. They found many things wrong that no other Doctors had found. They sent us to the Cleveland Clinic in Ohio and to the Chiari Institute in New York. We live in a town outside of Detroit Mi. So as you can see, this has ment allot of traveling for us. So far his diagnosises are, Ehlers Danlos type 3 or 2,

Chairi 1 malformation, Autonomic Dysfuntion, Fibromyalshia, Rickets (spending three years in bed and no sun light, Bradycardia/tachacardia, Scheuermanns Disease, and Osteopenia. And to think, three years ago, he was healthy, happy, and had a future. I just don't know why this all happened so fast. He is the youngest of 5 boys, and they are all fine. Oh my I see this is getting long.

So to answer some of your questions :

Ginny- Yes he has tried Neurontin and topomax but they didn't help. He never fell (Before the pain) or dislocated the R knee, but that knee cap goes off track easily. He had been in track in High School, so perhaps the constant pounding of the joint could have contributed to the problem. His jaws, hips, shoulders and elbows dislocate and sublex, but so far not his knees. I may like to talk to you further about the nerve stimulater if that is OK.

- Yep, we tried Methadone. He got up to 60 mg but it made him very ill. Side affects were just too much to handle. The Fentenal Patches worked the best for pain, but again, the side affects for him where more than he could take.

Barbara- He has tried braces on his knee, physical therapy, massage therapy, energy work, warm water exersize, Accupressure, and of course the all famous head shrink. Nothing helped. Narcotics keep him at a level 8 out of 10. He has hit 10 many times.

So many of you have had very good anwsers for me. I understand that just like EDS no two people are going to be the same or find the same treatments that work. I have to find better relief, quality of life for him. We would be happy with that 5 or 6 level. I want to see him continue school, he had big dreams. I told the Dr today, I want to start looking at other methods of pain control, like blocks, stimulators, morphine pump, things like that. These levels are narcotics are getting way too high. I worry where we go from here.

Thank you all so much. Everyone of you that answered, helped me. :~)

Cindy

[Guest guest]

Cindy - Quite a few of us have spinal cord stimulators. Feel free to pummel us with questions. You also asked about docs. Typically, although not always, the docs that are the most on top of RSD are anesthesiologists who have gone on to get board certified in pain management. Their training in anestesiology gives the background necessary to perform the various nerve blocks that can relieve nerve-based pain. They are also trained in the surgery that is required in the implantation of spinal and peripheral nerve stimulators, Does this help? Generally these docs, while affiliated with one of the larger hospitals, also spend most of their time at a Pain Management Clinic where blocks and other interventions can be performed on an out-patient basis.Cindy wrote:

Thank you all for the warm welcome. I see this board is as busy as my EDS board. I wil have a hard time keeping up with all the emails. <G> Your answers can in just in time for me to talk to the primary this morning. He isn't convinced that Dyaln has RSD, but will look into it further. The Doc does have several reports from other specialists that have stated they feel he may have it. The primary wants us to see an edrocronologist and another ortho Dr before he goes futher looking into the RSD. He said he would send us to a nuerologist for that, is that the right type of Dr for RSD? Today the Dr raised his meds again. He'll now take 230 mg MsContin 3 times a day totaling 690 mg. and moved up the Actiq to 800 mcg. Absolutly nothing so far has gotten Dylan under an 8 in pain. Hopefully this will help.

Getting my son help has been very hard. No one wants to put a teenager on narctotics, and no one wants to see him suffer like this. EDS can be a very painful disorder, but his pain is not normal with EDS. I took him to the National Institute of Health in land finally, after getting no help at home. They found many things wrong that no other Doctors had found. They sent us to the Cleveland Clinic in Ohio and to the Chiari Institute in New York. We live in a town outside of Detroit Mi. So as you can see, this has ment allot of traveling for us. So far his diagnosises are, Ehlers Danlos type 3 or 2,

Chairi 1 malformation, Autonomic Dysfuntion, Fibromyalshia, Rickets (spending three years in bed and no sun light, Bradycardia/tachacardia, Scheuermanns Disease, and Osteopenia. And to think, three years ago, he was healthy, happy, and had a future. I just don't know why this all happened so fast. He is the youngest of 5 boys, and they are all fine. Oh my I see this is getting long.

So to answer some of your questions :

Ginny- Yes he has tried Neurontin and topomax but they didn't help. He never fell (Before the pain) or dislocated the R knee, but that knee cap goes off track easily. He had been in track in High School, so perhaps the constant pounding of the joint could have contributed to the problem. His jaws, hips, shoulders and elbows dislocate and sublex, but so far not his knees. I may like to talk to you further about the nerve stimulater if that is OK.

- Yep, we tried Methadone. He got up to 60 mg but it made him very ill. Side affects were just too much to handle. The Fentenal Patches worked the best for pain, but again, the side affects for him where more than he could take.

Barbara- He has tried braces on his knee, physical therapy, massage therapy, energy work, warm water exersize, Accupressure, and of course the all famous head shrink. Nothing helped. Narcotics keep him at a level 8 out of 10. He has hit 10 many times.

So many of you have had very good anwsers for me. I understand that just like EDS no two people are going to be the same or find the same treatments that work. I have to find better relief, quality of life for him. We would be happy with that 5 or 6 level. I want to see him continue school, he had big dreams. I told the Dr today, I want to start looking at other methods of pain control, like blocks, stimulators, morphine pump, things like that. These levels are narcotics are getting way too high. I worry where we go from here.

Thank you all so much. Everyone of you that answered, helped me. :~)

Cindy

[Guest guest]

Yes Barbara that did help. Thanks. My son recently left his pain Doc. The primary has taken over and actually has been more aggressive with pain meds. Being that Dylan, my son, is almost 18, I can now take him to another pain Dr if necessary. He had been going through our local Children's Hospital pain team. His primary is a professor. He did say today he may be sending us to another pain Dr in the near future. These High doses can't last forever. I worry about damage to his organs, and it seems his memory is terrible. I just pummeled Ginny off board <G> so many questions. Hope I didn't over whelm her. There are folks on my EDS boards that have RSD but none have the stimulator, so I guess I'm in the right place to ask. Instead of repeating it all, I'll wait to see what she says. Part of the concern is the surgery with the EDS healing issues. We don't heal well and our incisions often don't hold stitches.

Are stimulators tried before morphine pumps? And I imagine both have metal in them? Dylan is suppose to have a head MRI once a year for his Chiari, any metal would make that impossible. But this pain just has to get under some kind of control.

On a side note, The new primary is very nice to look at ;~)

Cindy

Re: Re: I'm New Here

Cindy - Quite a few of us have spinal cord stimulators. Feel free to pummel us with questions. You also asked about docs. Typically, although not always, the docs that are the most on top of RSD are anesthesiologists who have gone on to get board certified in pain management. Their training in anestesiology gives the background necessary to perform the various nerve blocks that can relieve nerve-based pain. They are also trained in the surgery that is required in the implantation of spinal and peripheral nerve stimulators, Does this help? Generally these docs, while affiliated with one of the larger hospitals, also spend most of their time at a Pain Management Clinic where blocks and other interventions can be performed on an out-patient basis.Cindy wrote:

Thank you all for the warm welcome. I see this board is as busy as my EDS board. I wil have a hard time keeping up with all the emails. <G> Your answers can in just in time for me to talk to the primary this morning. He isn't convinced that Dyaln has RSD, but will look into it further. The Doc does have several reports from other specialists that have stated they feel he may have it. The primary wants us to see an edrocronologist and another ortho Dr before he goes futher looking into the RSD. He said he would send us to a nuerologist for that, is that the right type of Dr for RSD? Today the Dr raised his meds again. He'll now take 230 mg MsContin 3 times a day totaling 690 mg. and moved up the Actiq to 800 mcg. Absolutly nothing so far has gotten Dylan under an 8 in pain. Hopefully this will help.

Getting my son help has been very hard. No one wants to put a teenager on narctotics, and no one wants to see him suffer like this. EDS can be a very painful disorder, but his pain is not normal with EDS. I took him to the National Institute of Health in land finally, after getting no help at home. They found many things wrong that no other Doctors had found. They sent us to the Cleveland Clinic in Ohio and to the Chiari Institute in New York. We live in a town outside of Detroit Mi. So as you can see, this has ment allot of traveling for us. So far his diagnosises are, Ehlers Danlos type 3 or 2,

Chairi 1 malformation, Autonomic Dysfuntion, Fibromyalshia, Rickets (spending three years in bed and no sun light, Bradycardia/tachacardia, Scheuermanns Disease, and Osteopenia. And to think, three years ago, he was healthy, happy, and had a future. I just don't know why this all happened so fast. He is the youngest of 5 boys, and they are all fine. Oh my I see this is getting long.

So to answer some of your questions :

Ginny- Yes he has tried Neurontin and topomax but they didn't help. He never fell (Before the pain) or dislocated the R knee, but that knee cap goes off track easily. He had been in track in High School, so perhaps the constant pounding of the joint could have contributed to the problem. His jaws, hips, shoulders and elbows dislocate and sublex, but so far not his knees. I may like to talk to you further about the nerve stimulater if that is OK.

- Yep, we tried Methadone. He got up to 60 mg but it made him very ill. Side affects were just too much to handle. The Fentenal Patches worked the best for pain, but again, the side affects for him where more than he could take.

Barbara- He has tried braces on his knee, physical therapy, massage therapy, energy work, warm water exersize, Accupressure, and of course the all famous head shrink. Nothing helped. Narcotics keep him at a level 8 out of 10. He has hit 10 many times.

So many of you have had very good anwsers for me. I understand that just like EDS no two people are going to be the same or find the same treatments that work. I have to find better relief, quality of life for him. We would be happy with that 5 or 6 level. I want to see him continue school, he had big dreams. I told the Dr today, I want to start looking at other methods of pain control, like blocks, stimulators, morphine pump, things like that. These levels are narcotics are getting way too high. I worry where we go from here.

Thank you all so much. Everyone of you that answered, helped me. :~)

Cindy

[Guest guest]

Cindy..you stated that dylan has rickets also...has he ever been tested for celiac sprue which commonly goes with EDS. I have celiac sprue and also have the osteopenia and I have vitamin deficiencies. With celiac sprue your body doesn't absorb meds right or vitamins..you have to go on a gluten free diet to have your body absorb the nutrients. With the combination of fibro..EDS and his other dx ..like me..it gets tricky for drs to know which pain is coming from what disorder. I am glad your primary wants to get second opinions.

I can tell you what I know about the SCS...but I will let you know my dr told me I could not have the nerve blocks because my RSD is in the upper region of my body and I would need them to be injected into/near my voicebox and as you know with EDS we scar easy and procedures never seem to work correctly with us. I also was told that I can not have the SCS..all of my previous surgeries have left me with tons of scar tissue..to the poin that my knee froze and had to be bent under anesthesia 6 months after my surgery because it would not bend even with 6 months of pt. With EDS dr want to do the least invasive procedures first...my next step is going to be accupunture..I have heard it helps some and doesn't help others..but it is the least invasive procedure at this time. I am glad you have an EDS support group..I have never joined a support room til the RSD dx..any questions you have feel free to email me on the post or privately...hope you and your son get the

answers and relief you both need...Hugs..GinnyCindy wrote:

Thank you all for the warm welcome. I see this board is as busy as my EDS board. I wil have a hard time keeping up with all the emails. <G> Your answers can in just in time for me to talk to the primary this morning. He isn't convinced that Dyaln has RSD, but will look into it further. The Doc does have several reports from other specialists that have stated they feel he may have it. The primary wants us to see an edrocronologist and another ortho Dr before he goes futher looking into the RSD. He said he would send us to a nuerologist for that, is that the right type of Dr for RSD? Today the Dr raised his meds again. He'll now take 230 mg MsContin 3 times a day totaling 690 mg. and moved up the Actiq to 800 mcg. Absolutly nothing so far has gotten Dylan under an 8 in pain. Hopefully this will help.

Getting my son help has been very hard. No one wants to put a teenager on narctotics, and no one wants to see him suffer like this. EDS can be a very painful disorder, but his pain is not normal with EDS. I took him to the National Institute of Health in land finally, after getting no help at home. They found many things wrong that no other Doctors had found. They sent us to the Cleveland Clinic in Ohio and to the Chiari Institute in New York. We live in a town outside of Detroit Mi. So as you can see, this has ment allot of traveling for us. So far his diagnosises are, Ehlers Danlos type 3 or 2,

Chairi 1 malformation, Autonomic Dysfuntion, Fibromyalshia, Rickets (spending three years in bed and no sun light, Bradycardia/tachacardia, Scheuermanns Disease, and Osteopenia. And to think, three years ago, he was healthy, happy, and had a future. I just don't know why this all happened so fast. He is the youngest of 5 boys, and they are all fine. Oh my I see this is getting long.

So to answer some of your questions :

Ginny- Yes he has tried Neurontin and topomax but they didn't help. He never fell (Before the pain) or dislocated the R knee, but that knee cap goes off track easily. He had been in track in High School, so perhaps the constant pounding of the joint could have contributed to the problem. His jaws, hips, shoulders and elbows dislocate and sublex, but so far not his knees. I may like to talk to you further about the nerve stimulater if that is OK.

- Yep, we tried Methadone. He got up to 60 mg but it made him very ill. Side affects were just too much to handle. The Fentenal Patches worked the best for pain, but again, the side affects for him where more than he could take.

Barbara- He has tried braces on his knee, physical therapy, massage therapy, energy work, warm water exersize, Accupressure, and of course the all famous head shrink. Nothing helped. Narcotics keep him at a level 8 out of 10. He has hit 10 many times.

So many of you have had very good anwsers for me. I understand that just like EDS no two people are going to be the same or find the same treatments that work. I have to find better relief, quality of life for him. We would be happy with that 5 or 6 level. I want to see him continue school, he had big dreams. I told the Dr today, I want to start looking at other methods of pain control, like blocks, stimulators, morphine pump, things like that. These levels are narcotics are getting way too high. I worry where we go from here.

Thank you all so much. Everyone of you that answered, helped me. :~)

Cindy

[Guest guest]

Are stimulators tried before morphine pumps? And I imagine both have metal in them? Dylan is suppose to have a head MRI once a year for his Chiari, any metal would make that impossible

Cindy,

Dylan would not be able to have an MRI if he has an implant. It's a big no-no because it melts the implant and can cause coma in the patient. They are doing studies to find a way to be able to do MRI's when people have one. Don't think they have it figured out yet, but at least they are working on it.

N.__________________________________________________

[Guest guest]

Ginny, First off, sorry for the off board questions about the SCS, I see now by looking back that it was that first mentioned it. So in a separate email, I'll ask questions about the group about it.

Now for the celiac sprue, I have never heard of it. I did look it up just now, and it is something I will look into further. Dylan sees an Endocrinologist in January, perhaps he can run the blood work with the rest of what they will test for. and I will ask the primary next month. This past month, I had put him on an all natural, organic diet but it didn't seem to help. I did not remove Glutens. Just today I gave up on it, and he is having his first glass of cool-aid in a month, and he says it tastes funny. <G> I gave him an egg sandwich on white bread and he through it away. I guess he got used to the healthy stuff. Last month I asked the primary to test his copper, magnesium and zinc, (often low with EDS) and they were all low. It's like I have this great big puzzle infront of me, all these pieces thrown around and I can't put anything together. I can't figure out what pieces are missing.

I'm guessing with your scar issues, you are Classical type EDS? We don't know for sure if Dylan is type 3 or 2. Depends on the Doc you ask. The Ehlers Danlos National Foundation just came out this week with the new all types CD for us to give our Doctors to learn from. I'd be glad to make a copy and send you one. I gave one to the Dr today. He teaches 3rd year residents, so he was happy to get it.

You mention trying acupuncture, accupressure is less invasive and usually much cheaper and basically the same thing. It helps Dylan's pain in all areas except his knee. It is not hard at all to learn to work on your self. Well, any way thank you for your help.

Cindy

Re: Re: I'm New Here

Cindy..you stated that dylan has rickets also...has he ever been tested for celiac sprue which commonly goes with EDS. I have celiac sprue and also have the osteopenia and I have vitamin deficiencies. With celiac sprue your body doesn't absorb meds right or vitamins..you have to go on a gluten free diet to have your body absorb the nutrients. With the combination of fibro..EDS and his other dx ..like me..it gets tricky for drs to know which pain is coming from what disorder. I am glad your primary wants to get second opinions.

I can tell you what I know about the SCS...but I will let you know my dr told me I could not have the nerve blocks because my RSD is in the upper region of my body and I would need them to be injected into/near my voicebox and as you know with EDS we scar easy and procedures never seem to work correctly with us. I also was told that I can not have the SCS..all of my previous surgeries have left me with tons of scar tissue..to the poin that my knee froze and had to be bent under anesthesia 6 months after my surgery because it would not bend even with 6 months of pt. With EDS dr want to do the least invasive procedures first...my next step is going to be accupunture..I have heard it helps some and doesn't help others..but it is the least invasive procedure at this time. I am glad you have an EDS support group..I have never joined a support room til the RSD dx..any questions you have feel free to email me on the post or privately...hope you and your son get the answers and relief you both need...Hugs..GinnyCindy wrote:

Thank you all for the warm welcome. I see this board is as busy as my EDS board. I wil have a hard time keeping up with all the emails. <G> Your answers can in just in time for me to talk to the primary this morning. He isn't convinced that Dyaln has RSD, but will look into it further. The Doc does have several reports from other specialists that have stated they feel he may have it. The primary wants us to see an edrocronologist and another ortho Dr before he goes futher looking into the RSD. He said he would send us to a nuerologist for that, is that the right type of Dr for RSD? Today the Dr raised his meds again. He'll now take 230 mg MsContin 3 times a day totaling 690 mg. and moved up the Actiq to 800 mcg. Absolutly nothing so far has gotten Dylan under an 8 in pain. Hopefully this will help.

Getting my son help has been very hard. No one wants to put a teenager on narctotics, and no one wants to see him suffer like this. EDS can be a very painful disorder, but his pain is not normal with EDS. I took him to the National Institute of Health in land finally, after getting no help at home. They found many things wrong that no other Doctors had found. They sent us to the Cleveland Clinic in Ohio and to the Chiari Institute in New York. We live in a town outside of Detroit Mi. So as you can see, this has ment allot of traveling for us. So far his diagnosises are, Ehlers Danlos type 3 or 2,

Chairi 1 malformation, Autonomic Dysfuntion, Fibromyalshia, Rickets (spending three years in bed and no sun light, Bradycardia/tachacardia, Scheuermanns Disease, and Osteopenia. And to think, three years ago, he was healthy, happy, and had a future. I just don't know why this all happened so fast. He is the youngest of 5 boys, and they are all fine. Oh my I see this is getting long.

So to answer some of your questions :

Ginny- Yes he has tried Neurontin and topomax but they didn't help. He never fell (Before the pain) or dislocated the R knee, but that knee cap goes off track easily. He had been in track in High School, so perhaps the constant pounding of the joint could have contributed to the problem. His jaws, hips, shoulders and elbows dislocate and sublex, but so far not his knees. I may like to talk to you further about the nerve stimulater if that is OK.

- Yep, we tried Methadone. He got up to 60 mg but it made him very ill. Side affects were just too much to handle. The Fentenal Patches worked the best for pain, but again, the side affects for him where more than he could take.

Barbara- He has tried braces on his knee, physical therapy, massage therapy, energy work, warm water exersize, Accupressure, and of course the all famous head shrink. Nothing helped. Narcotics keep him at a level 8 out of 10. He has hit 10 many times.

So many of you have had very good anwsers for me. I understand that just like EDS no two people are going to be the same or find the same treatments that work. I have to find better relief, quality of life for him. We would be happy with that 5 or 6 level. I want to see him continue school, he had big dreams. I told the Dr today, I want to start looking at other methods of pain control, like blocks, stimulators, morphine pump, things like that. These levels are narcotics are getting way too high. I worry where we go from here.

Thank you all so much. Everyone of you that answered, helped me. :~)

Cindy

[Guest guest]

Cindy..don't apologize feel free to write me on or off the boards any help or advice I can give I will or will tell you who has the information you need. I find alot of drs don't know about EDS...they have heard of it but really don't know about the types. I would love a copy of the cd..my mom also has EDS and would probably love to learn more about it. I haven'[t tried either accupunture or accupressure.. would like to know more now about accupressure...since i know this is where my treatment will be heading in the near future. make sure Dylan has lots of gluten before doing the blood test or it will come back false negative even if he does have celiac sprue...after the blood test comes back positve you can either opt to just remove gluten from his diet or get and endoscopy for a definetive dx of celiac. I opted to get the endoscopy since I was 33 when I finally got dx with it. I wasn't dx with EDS until I was in my late 20's...I had been dx with

Juvenile Rheumatoid arthritis at 16 yr old though. The drs I went to were mosly orthopedic and the rheumatologist always said I may have a connective tissue disorder but never had me tested for anything. It wasn't until I was in such excruciating pain and no one could tell me why that I finally was tested and dx with EDS. Even though there is nothing you can do to treat EDS..it was a relief to know I had something physically wrong with me and that the few drs who told me it was all in my head was wrong. I am glad dyan is getting the dx young and can be aware of it. Hugs..GinnyCindy wrote:

Ginny, First off, sorry for the off board questions about the SCS, I see now by looking back that it was that first mentioned it. So in a separate email, I'll ask questions about the group about it.

Now for the celiac sprue, I have never heard of it. I did look it up just now, and it is something I will look into further. Dylan sees an Endocrinologist in January, perhaps he can run the blood work with the rest of what they will test for. and I will ask the primary next month. This past month, I had put him on an all natural, organic diet but it didn't seem to help. I did not remove Glutens. Just today I gave up on it, and he is having his first glass of cool-aid in a month, and he says it tastes funny. <G> I gave him an egg sandwich on white bread and he through it away. I guess he got used to the healthy stuff. Last month I asked the primary to test his copper, magnesium and zinc, (often low with EDS) and they were all low. It's like I have this great big puzzle infront of me, all these pieces thrown around and I can't put anything together. I can't figure out what pieces are missing.

I'm guessing with your scar issues, you are Classical type EDS? We don't know for sure if Dylan is type 3 or 2. Depends on the Doc you ask. The Ehlers Danlos National Foundation just came out this week with the new all types CD for us to give our Doctors to learn from. I'd be glad to make a copy and send you one. I gave one to the Dr today. He teaches 3rd year residents, so he was happy to get it.

You mention trying acupuncture, accupressure is less invasive and usually much cheaper and basically the same thing. It helps Dylan's pain in all areas except his knee. It is not hard at all to learn to work on your self. Well, any way thank you for your help.

Cindy

Re: Re: I'm New Here

Cindy..you stated that dylan has rickets also...has he ever been tested for celiac sprue which commonly goes with EDS. I have celiac sprue and also have the osteopenia and I have vitamin deficiencies. With celiac sprue your body doesn't absorb meds right or vitamins..you have to go on a gluten free diet to have your body absorb the nutrients. With the combination of fibro..EDS and his other dx ..like me..it gets tricky for drs to know which pain is coming from what disorder. I am glad your primary wants to get second opinions.

I can tell you what I know about the SCS...but I will let you know my dr told me I could not have the nerve blocks because my RSD is in the upper region of my body and I would need them to be injected into/near my voicebox and as you know with EDS we scar easy and procedures never seem to work correctly with us. I also was told that I can not have the SCS..all of my previous surgeries have left me with tons of scar tissue..to the poin that my knee froze and had to be bent under anesthesia 6 months after my surgery because it would not bend even with 6 months of pt. With EDS dr want to do the least invasive procedures first...my next step is going to be accupunture..I have heard it helps some and doesn't help others..but it is the least invasive procedure at this time. I am glad you have an EDS support group..I have never joined a support room til the RSD dx..any questions you have feel free to email me on the post or privately...hope you and your son get the

answers and relief you both need...Hugs..GinnyCindy wrote:

Thank you all for the warm welcome. I see this board is as busy as my EDS board. I wil have a hard time keeping up with all the emails. <G> Your answers can in just in time for me to talk to the primary this morning. He isn't convinced that Dyaln has RSD, but will look into it further. The Doc does have several reports from other specialists that have stated they feel he may have it. The primary wants us to see an edrocronologist and another ortho Dr before he goes futher looking into the RSD. He said he would send us to a nuerologist for that, is that the right type of Dr for RSD? Today the Dr raised his meds again. He'll now take 230 mg MsContin 3 times a day totaling 690 mg. and moved up the Actiq to 800 mcg. Absolutly nothing so far has gotten Dylan under an 8 in pain. Hopefully this will help.

Getting my son help has been very hard. No one wants to put a teenager on narctotics, and no one wants to see him suffer like this. EDS can be a very painful disorder, but his pain is not normal with EDS. I took him to the National Institute of Health in land finally, after getting no help at home. They found many things wrong that no other Doctors had found. They sent us to the Cleveland Clinic in Ohio and to the Chiari Institute in New York. We live in a town outside of Detroit Mi. So as you can see, this has ment allot of traveling for us. So far his diagnosises are, Ehlers Danlos type 3 or 2,

Chairi 1 malformation, Autonomic Dysfuntion, Fibromyalshia, Rickets (spending three years in bed and no sun light, Bradycardia/tachacardia, Scheuermanns Disease, and Osteopenia. And to think, three years ago, he was healthy, happy, and had a future. I just don't know why this all happened so fast. He is the youngest of 5 boys, and they are all fine. Oh my I see this is getting long.

So to answer some of your questions :

Ginny- Yes he has tried Neurontin and topomax but they didn't help. He never fell (Before the pain) or dislocated the R knee, but that knee cap goes off track easily. He had been in track in High School, so perhaps the constant pounding of the joint could have contributed to the problem. His jaws, hips, shoulders and elbows dislocate and sublex, but so far not his knees. I may like to talk to you further about the nerve stimulater if that is OK.

- Yep, we tried Methadone. He got up to 60 mg but it made him very ill. Side affects were just too much to handle. The Fentenal Patches worked the best for pain, but again, the side affects for him where more than he could take.

Barbara- He has tried braces on his knee, physical therapy, massage therapy, energy work, warm water exersize, Accupressure, and of course the all famous head shrink. Nothing helped. Narcotics keep him at a level 8 out of 10. He has hit 10 many times.

So many of you have had very good anwsers for me. I understand that just like EDS no two people are going to be the same or find the same treatments that work. I have to find better relief, quality of life for him. We would be happy with that 5 or 6 level. I want to see him continue school, he had big dreams. I told the Dr today, I want to start looking at other methods of pain control, like blocks, stimulators, morphine pump, things like that. These levels are narcotics are getting way too high. I worry where we go from here.

Thank you all so much. Everyone of you that answered, helped me. :~)

Cindy

[Guest guest]

Cindy,

Hi, My name is Beth and I am a long-time lurker, although I don't

post very often. I have RSD and thoracic outlet syndrome as a

result of a autoimmune reaction to a tetanus booster injection -

lucky me, happens to abt 1 in a million! Anyway, I've also

developed MPS and fibro, and during all my testing and therapy

learned I have osteoporosis (premenopausal), adult-onset scoliosis,

and am extremely hypermobile in both large and small joints. Ring

any bells? My mom's side of the family has a history of aneurysms

(her brother died of an AAA at age 40, her sister has a cerebral

one, inoperable, that luckily sealed itself or she wd not be here),

and all of us have arms and legs abnormally long for our trunks.

A member of an RSD board with 2 children with EDS suggested I look

into it, and I did eventually get to a geneticist at the Univ. of

Illinois at Chicago.

Besides hypermobility, skeletal problems and arm-to-trunk ratio

abnormality, he noted the very soft skin, easy bruising and visible

vascular pattern on my chest and feet. I've also had lots of dental

work, with many fillings and 4 permanent teeth removed due to a

crowded jaw. Based on these and a few other findings he dx'd me as

having a heritable connective tissue disorder, but said it was not

consistent with Marfan's or EDS. However, he talked abt not having

a test to identify exactly what my specific disorder was. I think

based on his requiring a test for identification, it is very likely

a form of EDS that they don't have a test for yet, very possibly the

hypermobility type given how lax I am in both small and large joints.

I wd score a 9/9 on the Beighton scale except the pinky on the RSD

affected hand is too stiff to bend backwards very much these days,

but it wd have prior to RSD/TOS.

I also learned that nerve entrapment problems are common in people

with EDS, and the geneticist told me that while the connective

tissue disorder wouldn't have caused the autoimmune reaction, which

originally was an inflammation of the nerve plexus in my chest,

people who have connective tissue laxity have a harder time

recovering from trauma than people without a CTD. That's true in my

case, as the inflammation, which most recover from, led in my case

to TOS and RSD. So far I have had my first rib removed and pec

minor detached in order to decompress the nerves to my right arm and

stop the horrid pain and atrophy. The left side is progressing now,

but I am seeing Dr Schwartzman for the RSD and he advises against

further surgery. I have mottling, touch sensitivity and fleeting

burning attacks all over, as well as gut pain at times, but the

worst and constant deep pain is in the right arm, which is the arm

the injection was in. The rt hand changes color and goes cold

frequently, have tremors in the fingers, sweaty palm and can't stand

AC or drafts anywhere from shoulder to fingertips.

Anyway, sorry for the novel. Just wanted to know what you think abt

my theory of having EDS but one of the types there is no test for?

IF I contact this group you spoke of, are there Drs in the US who

can diagnose type 2 or 3? I know they do in the UK, they seem more

interested in investigating it over there. And wd the CD you

mention be useful to me? Wd appreciate any help, as the advice I

was given was to " call back in 3-4 years, they might have a test for

my disorder then " !

Ginny, think I will also look up celiac sprue, as my Vit D and

calcium levels were fine, just for some reason my body has not been

absorbing them to make new bone! I have also heard that with EDS the

contents of injections can go where they are not supposed to, and

wonder if this could have had anything to do with my reaction to the

tetanus booster, but I can't find any med literature on this, just

people who say their Drs informed them of it.

Thanks, and I am so sorry your son has had to deal with so much at

his age! The person who told me to look into EDS has two teens with

EDS, the daughter also has Chiari and has severe pain, but has had

some relief as she had surgery for the Chiari in New York last

year. If you like I cd contact her and see if she wd get in touch

with you, maybe compare Drs, treatments and/or see if she has any

useful advice to offer - she herself has Chiari and RSD, has a full

plate but a very caring and helpful person.

beth

> Thank you all for the warm welcome. I see this board is as

busy as my EDS board. I wil have a hard time keeping up with all the

emails. Your answers can in just in time for me to talk to the

primary this morning. He isn't convinced that Dyaln has RSD, but

will look into it further. The Doc does have several reports from

other specialists that have stated they feel he may have it. The

primary wants us to see an edrocronologist and another ortho Dr

before he goes futher looking into the RSD. He said he would send us

to a nuerologist for that, is that the right type of Dr for RSD?

Today the Dr raised his meds again. He'll now take 230 mg MsContin 3

times a day totaling 690 mg. and moved up the Actiq to 800 mcg.

Absolutly nothing so far has gotten Dylan under an 8 in pain.

Hopefully this will help.

> Getting my son help has been very hard. No one wants to put a

teenager on narctotics, and no one wants to see him suffer like

this. EDS can be a very painful disorder, but his pain is not normal

with EDS. I took him to the National Institute of Health in land

finally, after getting no help at home. They found many things wrong

that no other Doctors had found. They sent us to the Cleveland

Clinic in Ohio and to the Chiari Institute in New York. We live in a

town outside of Detroit Mi. So as you can see, this has ment allot

of traveling for us. So far his diagnosises are, Ehlers Danlos type

3 or 2,

> Chairi 1 malformation, Autonomic Dysfuntion, Fibromyalshia,

Rickets (spending three years in bed and no sun light,

Bradycardia/tachacardia, Scheuermanns Disease, and Osteopenia. And

to think, three years ago, he was healthy, happy, and had a future.

I just don't know why this all happened so fast. He is the youngest

of 5 boys, and they are all fine. Oh my I see this is getting long.

> So to answer some of your questions :

> Ginny- Yes he has tried Neurontin and topomax but they didn't

help. He never fell (Before the pain) or dislocated the R knee, but

that knee cap goes off track easily. He had been in track in High

School, so perhaps the constant pounding of the joint could have

contributed to the problem. His jaws, hips, shoulders and elbows

dislocate and sublex, but so far not his knees. I may like to talk

to you further about the nerve stimulater if that is OK.

> - Yep, we tried Methadone. He got up to 60 mg but it made

him very ill. Side affects were just too much to handle. The

Fentenal Patches worked the best for pain, but again, the side

affects for him where more than he could take.

> Barbara- He has tried braces on his knee, physical therapy,

massage therapy, energy work, warm water exersize, Accupressure, and

of course the all famous head shrink. Nothing helped. Narcotics keep

him at a level 8 out of 10. He has hit 10 many times.

>

> So many of you have had very good anwsers for me. I understand

that just like EDS no two people are going to be the same or find

the same treatments that work. I have to find better relief, quality

of life for him. We would be happy with that 5 or 6 level. I want to

see him continue school, he had big dreams. I told the Dr today, I

want to start looking at other methods of pain control, like blocks,

stimulators, morphine pump, things like that. These levels are

narcotics are getting way too high. I worry where we go from here.

> Thank you all so much. Everyone of you that answered, helped

me. :~)

> Cindy

>

>

>

[Guest guest]

Hello Beth.

Yes it is pretty obvious you have a connective tissue disorder. There are many EDSers with marfans cross overs, ( the body type) Most people with EDS do not fall into a neat little package of a type. Like me, I'm type 3 but have type 4 tendencies, my son is type 3 with type 2 tendencies. The most important thing about typing us is to be sure we don't have type 4. You have family history that leads you to type 4, so I would say you need to continue getting diagnosed. My son was in a research study at the National Institute of Health this Aug. They are studying EDS, Marfans, OI and related connective tissue disorders. If you are willing to travel to land I can get you the info you need to enter the study. They do not use your insurance, it is paid for by the government. They where a great help to us and continue to be. If there is any such thing as experts in Connective tissue disorders in the US, they are it. During this study, they think they have found the marker for type 3. The CD really can't help you till you get a Diagnosis, but I can send one to you too if you'd like. You can send me your address off list. I don't know why your Dr thinks you aren't consistent with EDS. When you know what to look for, it's easy to tell. The problem is their training or lack of it in medical school. By the way, all types can be as laxed as you. An easy way to tell if you have type 3 .... does the dentists shots work on you? Most type 3's don't respond to local anesthetic.

Thanks for the offer to connect me with the lady with Chiari, but I have many connections already. I took Dylan to the New York Clinic also. They wanted to do the skull surgery, but we turned it down for now.

Well, Nice to "met" you. I strongly suggest you get the test for type 4.

Cindy

Re: I'm New Here

Cindy,Hi, My name is Beth and I am a long-time lurker, although I don't post very often. I have RSD and thoracic outlet syndrome as a result of a autoimmune reaction to a tetanus booster injection - lucky me, happens to abt 1 in a million! Anyway, I've also developed MPS and fibro, and during all my testing and therapy learned I have osteoporosis (premenopausal), adult-onset scoliosis, and am extremely hypermobile in both large and small joints. Ring any bells? My mom's side of the family has a history of aneurysms(her brother died of an AAA at age 40, her sister has a cerebral one, inoperable, that luckily sealed itself or she wd not be here), and all of us have arms and legs abnormally long for our trunks.A member of an RSD board with 2 children with EDS suggested I look into it, and I did eventually get to a geneticist at the Univ. of Illinois at Chicago.Besides hypermobility, skeletal problems and arm-to-trunk ratio abnormality, he noted the very soft skin, easy bruising and visible vascular pattern on my chest and feet. I've also had lots of dental work, with many fillings and 4 permanent teeth removed due to a crowded jaw. Based on these and a few other findings he dx'd me as having a heritable connective tissue disorder, but said it was not consistent with Marfan's or EDS. However, he talked abt not having a test to identify exactly what my specific disorder was. I think based on his requiring a test for identification, it is very likely a form of EDS that they don't have a test for yet, very possibly the hypermobility type given how lax I am in both small and large joints.I wd score a 9/9 on the Beighton scale except the pinky on the RSD affected hand is too stiff to bend backwards very much these days, but it wd have prior to RSD/TOS.I also learned that nerve entrapment problems are common in people with EDS, and the geneticist told me that while the connective tissue disorder wouldn't have caused the autoimmune reaction, which originally was an inflammation of the nerve plexus in my chest, people who have connective tissue laxity have a harder time recovering from trauma than people without a CTD. That's true in my case, as the inflammation, which most recover from, led in my case to TOS and RSD. So far I have had my first rib removed and pec minor detached in order to decompress the nerves to my right arm and stop the horrid pain and atrophy. The left side is progressing now, but I am seeing Dr Schwartzman for the RSD and he advises against further surgery. I have mottling, touch sensitivity and fleeting burning attacks all over, as well as gut pain at times, but the worst and constant deep pain is in the right arm, which is the arm the injection was in. The rt hand changes color and goes cold frequently, have tremors in the fingers, sweaty palm and can't stand AC or drafts anywhere from shoulder to fingertips.Anyway, sorry for the novel. Just wanted to know what you think abt my theory of having EDS but one of the types there is no test for? IF I contact this group you spoke of, are there Drs in the US who can diagnose type 2 or 3? I know they do in the UK, they seem more interested in investigating it over there. And wd the CD you mention be useful to me? Wd appreciate any help, as the advice I was given was to "call back in 3-4 years, they might have a test for my disorder then"!Ginny, think I will also look up celiac sprue, as my Vit D and calcium levels were fine, just for some reason my body has not been absorbing them to make new bone! I have also heard that with EDS the contents of injections can go where they are not supposed to, and wonder if this could have had anything to do with my reaction to the tetanus booster, but I can't find any med literature on this, just people who say their Drs informed them of it.Thanks, and I am so sorry your son has had to deal with so much at his age! The person who told me to look into EDS has two teens with EDS, the daughter also has Chiari and has severe pain, but has had some relief as she had surgery for the Chiari in New York last year. If you like I cd contact her and see if she wd get in touch with you, maybe compare Drs, treatments and/or see if she has any useful advice to offer - she herself has Chiari and RSD, has a full plate but a very caring and helpful person.beth> Thank you all for the warm welcome. I see this board is as busy as my EDS board. I wil have a hard time keeping up with all the emails. <G> Your answers can in just in time for me to talk to the primary this morning. He isn't convinced that Dyaln has RSD, but will look into it further. The Doc does have several reports from other specialists that have stated they feel he may have it. The primary wants us to see an edrocronologist and another ortho Dr before he goes futher looking into the RSD. He said he would send us to a nuerologist for that, is that the right type of Dr for RSD? Today the Dr raised his meds again. He'll now take 230 mg MsContin 3 times a day totaling 690 mg. and moved up the Actiq to 800 mcg. Absolutly nothing so far has gotten Dylan under an 8 in pain. Hopefully this will help. > Getting my son help has been very hard. No one wants to put a teenager on narctotics, and no one wants to see him suffer like this. EDS can be a very painful disorder, but his pain is not normal with EDS. I took him to the National Institute of Health in land finally, after getting no help at home. They found many things wrong that no other Doctors had found. They sent us to the Cleveland Clinic in Ohio and to the Chiari Institute in New York. We live in a town outside of Detroit Mi. So as you can see, this has ment allot of traveling for us. So far his diagnosises are, Ehlers Danlos type 3 or 2, > Chairi 1 malformation, Autonomic Dysfuntion, Fibromyalshia, Rickets (spending three years in bed and no sun light, Bradycardia/tachacardia, Scheuermanns Disease, and Osteopenia. And to think, three years ago, he was healthy, happy, and had a future. I just don't know why this all happened so fast. He is the youngest of 5 boys, and they are all fine. Oh my I see this is getting long. > So to answer some of your questions :> Ginny- Yes he has tried Neurontin and topomax but they didn't help. He never fell (Before the pain) or dislocated the R knee, but that knee cap goes off track easily. He had been in track in High School, so perhaps the constant pounding of the joint could have contributed to the problem. His jaws, hips, shoulders and elbows dislocate and sublex, but so far not his knees. I may like to talk to you further about the nerve stimulater if that is OK. > - Yep, we tried Methadone. He got up to 60 mg but it made him very ill. Side affects were just too much to handle. The Fentenal Patches worked the best for pain, but again, the side affects for him where more than he could take. > Barbara- He has tried braces on his knee, physical therapy, massage therapy, energy work, warm water exersize, Accupressure, and of course the all famous head shrink. Nothing helped. Narcotics keep him at a level 8 out of 10. He has hit 10 many times. > > So many of you have had very good anwsers for me. I understand that just like EDS no two people are going to be the same or find the same treatments that work. I have to find better relief, quality of life for him. We would be happy with that 5 or 6 level. I want to see him continue school, he had big dreams. I told the Dr today, I want to start looking at other methods of pain control, like blocks, stimulators, morphine pump, things like that. These levels are narcotics are getting way too high. I worry where we go from here. > Thank you all so much. Everyone of you that answered, helped me. :~)> Cindy> > >

[Guest guest]

Cindy,

The dentist shots work eventually but I always need extra shots to

get numb. Same for a recent procedure to open up the pec minor

incision which was infected, clean it and close it with traditional

sutures so it would heal, the Dr did it with Novacaine and was

surprised he had to give an extra injection as I still had feeling

in the area. As a kid I learned to " tough out " those horrid dental

appts and I think that is why I have a fairly high pain tolerance.

One thing that bugs me no end with my nerve problems, all the Drs

and therapists say " well you have great ROM " , well, you would too if

you were as hypermobile as me, duh! Thing is, it hurts like heck!!

The geneticist did send me for an echocardiogram which came back OK,

and he faxed my findings to the lab in Seattle?, Washington, anyway,

that does the testing, and they said they didn't think the testing

wd be helpful for me, don't know why or why not.

I tried to ask Dr Schwartzman abt this, as he is such a top Dr in

his field I thought he might have contacts with top Drs in

Rheumatology dealing with EDS - he brushed it off and said I don't

have it, without looking at my records. Guess it's the same as

anywhere, if it's not the Dr's specialty, they aren't interested!

He is tops for RSD so no complaints abt that, but do want to get the

connective tissue stuff sorted out sooner than 3-4 years!

Do you have info on the study, or is there info on-line I can look

at?

I will send my addy off the board, thanks!

beth

> > Thank you all for the warm welcome. I see this board is as

> busy as my EDS board. I wil have a hard time keeping up with all

the

> emails. Your answers can in just in time for me to talk to

the

> primary this morning. He isn't convinced that Dyaln has RSD, but

> will look into it further. The Doc does have several reports

from

> other specialists that have stated they feel he may have it. The

> primary wants us to see an edrocronologist and another ortho Dr

> before he goes futher looking into the RSD. He said he would

send us

> to a nuerologist for that, is that the right type of Dr for RSD?

> Today the Dr raised his meds again. He'll now take 230 mg

MsContin 3

> times a day totaling 690 mg. and moved up the Actiq to 800 mcg.

> Absolutly nothing so far has gotten Dylan under an 8 in pain.

> Hopefully this will help.

> > Getting my son help has been very hard. No one wants to

put a

> teenager on narctotics, and no one wants to see him suffer like

> this. EDS can be a very painful disorder, but his pain is not

normal

> with EDS. I took him to the National Institute of Health in

land

> finally, after getting no help at home. They found many things

wrong

> that no other Doctors had found. They sent us to the Cleveland

> Clinic in Ohio and to the Chiari Institute in New York. We live

in a

> town outside of Detroit Mi. So as you can see, this has ment

allot

> of traveling for us. So far his diagnosises are, Ehlers Danlos

type

> 3 or 2,

> > Chairi 1 malformation, Autonomic Dysfuntion,

Fibromyalshia,

> Rickets (spending three years in bed and no sun light,

> Bradycardia/tachacardia, Scheuermanns Disease, and Osteopenia.

And

> to think, three years ago, he was healthy, happy, and had a

future.

> I just don't know why this all happened so fast. He is the

youngest

> of 5 boys, and they are all fine. Oh my I see this is getting

long.

> > So to answer some of your questions :

> > Ginny- Yes he has tried Neurontin and topomax but they

didn't

> help. He never fell (Before the pain) or dislocated the R knee,

but

> that knee cap goes off track easily. He had been in track in

High

> School, so perhaps the constant pounding of the joint could have

> contributed to the problem. His jaws, hips, shoulders and elbows

> dislocate and sublex, but so far not his knees. I may like to

talk

> to you further about the nerve stimulater if that is OK.

> > - Yep, we tried Methadone. He got up to 60 mg but it

made

> him very ill. Side affects were just too much to handle. The

> Fentenal Patches worked the best for pain, but again, the side

> affects for him where more than he could take.

> > Barbara- He has tried braces on his knee, physical

therapy,

> massage therapy, energy work, warm water exersize, Accupressure,

and

> of course the all famous head shrink. Nothing helped. Narcotics

keep

> him at a level 8 out of 10. He has hit 10 many times.

> >

> > So many of you have had very good anwsers for me. I

understand

> that just like EDS no two people are going to be the same or

find

> the same treatments that work. I have to find better relief,

quality

> of life for him. We would be happy with that 5 or 6 level. I

want to

> see him continue school, he had big dreams. I told the Dr today,

I

> want to start looking at other methods of pain control, like

blocks,

> stimulators, morphine pump, things like that. These levels are

> narcotics are getting way too high. I worry where we go from

here.

> > Thank you all so much. Everyone of you that answered,

helped

> me. :~)

> > Cindy

> >

> >

> >

[Guest guest]

Hi Sue - Welcome to the group. Sleep issues definitely go along with FM. I

don't know that they can cause it. Some believe there is a genetic component,

and some believe it's just a build-up of lots of stress or a traumatic event

that causes it. I hope you find lots of caring and support here. I have.

Jeanne in WI

Hi to everyone!

I just went to the doctor for a check up on Tuesday. I gave her my list of

" complaints " , expecting to hear that I have a thyroid out of whack or needed

vitamins or that I'd be told I'm just making up all my complaints. Instead, I

was told that she (the doctor) wanted to run a bunch of tests, that what she is

thinking is diagnosed by ruling out everything else and that she suspects I have

fibromyalgia.

After going home and reading about what this is, I see where she is thinking

this. I decided on Thursday that heck NO, I'm not going to allow this to happen

to me. I had a good day on Friday. But today, I went out to work in my yard. It

was beautiful outside. I love nothing more than working in my yard. I last 3

hours. I used to work for 10-12 hours. I was in so much pain in my hips and legs

that I had to come in to lay down. After sleeping for about 2 hours, I got up,

very, very depressed.

A little more about me....I'm a single mom, 53. I have a daughter who is 18

and getting ready to leave for college this summer. I also have an 11 year old

daughter who has Down syndrome and autism. She didn't sleep through the night

until she was around 9 years old. Since it was only me here with her, I was up,

too. Then I would get up and go to work everyday.

So, first question of what I am sure will be many...could this sleep

deprivation have caused this? I do know that I don't sleep very deeply at all,

that I wake up 4 and 5 times every night.

Thanks for allowing me to join your group. I know I will learn a lot.

Sue in Illinois

--

Sue

[Guest guest]

[image: Welcome Comment Graphic #1534]

Nice to have you with us. We have alot in common aside from fibro that is. I

have a daughter turning 18 this summer and graduating hs next year. Love to

work in the yard and used to do long hours out there. Now it is short

spurts. When able. Suffer pain and fatigue, but dang it I might have fibro

and ddd, but it don't have me. I am gonna do anyhow. I am married, but might

as well be single. Hubby is never around. always working. Hope you enjoy it

here. Lots of nice people who care and understand.

> Hi to everyone!

> I just went to the doctor for a check up on Tuesday. I gave her my list of

> " complaints " , expecting to hear that I have a thyroid out of whack or needed

> vitamins or that I'd be told I'm just making up all my complaints. Instead,

> I was told that she (the doctor) wanted to run a bunch of tests, that what

> she is thinking is diagnosed by ruling out everything else and that she

> suspects I have fibromyalgia.

> After going home and reading about what this is, I see where she is

> thinking this. I decided on Thursday that heck NO, I'm not going to allow

> this to happen to me. I had a good day on Friday. But today, I went out to

> work in my yard. It was beautiful outside. I love nothing more than working

> in my yard. I last 3 hours. I used to work for 10-12 hours. I was in so much

> pain in my hips and legs that I had to come in to lay down. After sleeping

> for about 2 hours, I got up, very, very depressed.

> A little more about me....I'm a single mom, 53. I have a daughter who is

> 18 and getting ready to leave for college this summer. I also have an 11

> year old daughter who has Down syndrome and autism. She didn't sleep through

> the night until she was around 9 years old. Since it was only me here with

> her, I was up, too. Then I would get up and go to work everyday.

> So, first question of what I am sure will be many...could this sleep

> deprivation have caused this? I do know that I don't sleep very deeply at

> all, that I wake up 4 and 5 times every night.

> Thanks for allowing me to join your group. I know I will learn a lot.

> Sue in Illinois

> --

> Sue

>

>

> ------------------------------------

>

> 1. While it is wonderful to share our experiences with everyone on the

> list as to what treatments do and don't work for us, pls always check with

> your dr. Some treatments are dangerous when given along with other meds as

> well as to certain health conditions or just dangerous in general.

>

> 2. If you are in a difficult situation (doesn't matter what it is) pls

> don't be afraid to ask for help. It is the first step to trying to make

> that situation better.

>

> 3. To unsubscribe the e-mail is:

> Fibromyalgia_Support_Group-unsubscribe

>

> 4. Also, it is not uncommon for more than one member to be feeling bad at

> the same time when it comes to flares and b/c of that potentially take

> something another member says the wrong way. And that includes the things

> that one member may find funny (even if it's laughing at fibro itself) even

> though we who deal with illness whether one such as fibro or multiple

> illnesses try to keep a sense of humor.

>

> 5. Pls let's be gentle with each other, and if you are having a bad day

> pls let us know so that we can do our best to offer our support.

>

> Have a nice day everyone.

>

[Guest guest]

Thanks for the welcome. I'm still learning here...what is ddd?

--

Sue

---- vh herbaladysfriends@...> wrote:

Suffer pain and fatigue, but dang it I might have fibro

> and ddd, but it don't have me.

[Guest guest]

Welcome Sue, I'm hoping we are able to answer your questions and give you

encouragement. I would certainly imagine that the stress you have been through

with your daughter could have triggered it. It is such a wierd disease, you just

never know. It sounds like you have a good thorough doctor though, and that is a

good thing. Good luck and don't hesitate to ask anything or just come and

vent...that's what we are here for.

Hugs,

/Mi

I'm new here

Hi to everyone!

I just went to the doctor for a check up on Tuesday. I gave her my list of

" complaints " , expecting to hear that I have a thyroid out of whack or needed

vitamins or that I'd be told I'm just making up all my complaints. Instead, I

was told that she (the doctor) wanted to run a bunch of tests, that what she is

thinking is diagnosed by ruling out everything else and that she suspects I have

fibromyalgia.

After going home and reading about what this is, I see where she is thinking

this. I decided on Thursday that heck NO, I'm not going to allow this to happen

to me. I had a good day on Friday. But today, I went out to work in my yard. It

was beautiful outside. I love nothing more than working in my yard. I last 3

hours. I used to work for 10-12 hours. I was in so much pain in my hips and legs

that I had to come in to lay down. After sleeping for about 2 hours, I got up,

very, very depressed.

A little more about me....I'm a single mom, 53. I have a daughter who is 18

and getting ready to leave for college this summer. I also have an 11 year old

daughter who has Down syndrome and autism. She didn't sleep through the night

until she was around 9 years old. Since it was only me here with her, I was up,

too. Then I would get up and go to work everyday.

So, first question of what I am sure will be many...could this sleep

deprivation have caused this? I do know that I don't sleep very deeply at all,

that I wake up 4 and 5 times every night.

Thanks for allowing me to join your group. I know I will learn a lot.

Sue in Illinois

--

Sue

[Guest guest]

Welcome Sue. I am new here also. What a wonderful welcome you were given.

It seems everybody here actually gets it. That is amazing. I wish I could

do 2 hours outside.

I can't even stand for more than 15 minutes in one place and I feel like I

am going to die in my back.

I have patches but they don't work because the pain is inside not outside.

I take Lyrica which helps.

I take meds for sleep which helps. I take homeopathic products which seem

to help the most

I am also on anti depressants which help with the fog most of the time. I

am not flaring on occasion

I seem to stay in a flare. So you are still one of the lucky ones. I will

pray for you that your illness

does not get worse and help if I can.

Jackie

On Sun, Apr 6, 2008 at 12:50 PM, Andersen Lander2004@...>

wrote:

> Welcome Sue, I'm hoping we are able to answer your questions and give

> you encouragement. I would certainly imagine that the stress you have been

> through with your daughter could have triggered it. It is such a wierd

> disease, you just never know. It sounds like you have a good thorough doctor

> though, and that is a good thing. Good luck and don't hesitate to ask

> anything or just come and vent...that's what we are here for.

> Hugs,

> /Mi

>

> I'm new here

>

> Hi to everyone!

> I just went to the doctor for a check up on Tuesday. I gave her my list of

> " complaints " , expecting to hear that I have a thyroid out of whack or needed

> vitamins or that I'd be told I'm just making up all my complaints. Instead,

> I was told that she (the doctor) wanted to run a bunch of tests, that what

> she is thinking is diagnosed by ruling out everything else and that she

> suspects I have fibromyalgia.

> After going home and reading about what this is, I see where she is

> thinking this. I decided on Thursday that heck NO, I'm not going to allow

> this to happen to me. I had a good day on Friday. But today, I went out to

> work in my yard. It was beautiful outside. I love nothing more than working

> in my yard. I last 3 hours. I used to work for 10-12 hours. I was in so much

> pain in my hips and legs that I had to come in to lay down. After sleeping

> for about 2 hours, I got up, very, very depressed.

> A little more about me....I'm a single mom, 53. I have a daughter who is

> 18 and getting ready to leave for college this summer. I also have an 11

> year old daughter who has Down syndrome and autism. She didn't sleep through

> the night until she was around 9 years old. Since it was only me here with

> her, I was up, too. Then I would get up and go to work everyday.

> So, first question of what I am sure will be many...could this sleep

> deprivation have caused this? I do know that I don't sleep very deeply at

> all, that I wake up 4 and 5 times every night.

> Thanks for allowing me to join your group. I know I will learn a lot.

> Sue in Illinois

> --

> Sue

>

>

[Guest guest]

Nice to meet you Sue. And everyone. I'm Mickey from Illinois also. I wasn't

diagnosed til this past November. It's been quite a ride..literally.

Mickey

Andersen Lander2004@...> wrote:

Welcome Sue, I'm hoping we are able to answer your questions and give

you encouragement. I would certainly imagine that the stress you have been

through with your daughter could have triggered it. It is such a wierd disease,

you just never know. It sounds like you have a good thorough doctor though, and

that is a good thing. Good luck and don't hesitate to ask anything or just come

and vent...that's what we are here for.

Hugs,

/Mi

I'm new here

Hi to everyone!

I just went to the doctor for a check up on Tuesday. I gave her my list of

" complaints " , expecting to hear that I have a thyroid out of whack or needed

vitamins or that I'd be told I'm just making up all my complaints. Instead, I

was told that she (the doctor) wanted to run a bunch of tests, that what she is

thinking is diagnosed by ruling out everything else and that she suspects I have

fibromyalgia.

After going home and reading about what this is, I see where she is thinking

this. I decided on Thursday that heck NO, I'm not going to allow this to happen

to me. I had a good day on Friday. But today, I went out to work in my yard. It

was beautiful outside. I love nothing more than working in my yard. I last 3

hours. I used to work for 10-12 hours. I was in so much pain in my hips and legs

that I had to come in to lay down. After sleeping for about 2 hours, I got up,

very, very depressed.

A little more about me....I'm a single mom, 53. I have a daughter who is 18 and

getting ready to leave for college this summer. I also have an 11 year old

daughter who has Down syndrome and autism. She didn't sleep through the night

until she was around 9 years old. Since it was only me here with her, I was up,

too. Then I would get up and go to work everyday.

So, first question of what I am sure will be many...could this sleep deprivation

have caused this? I do know that I don't sleep very deeply at all, that I wake

up 4 and 5 times every night.

Thanks for allowing me to join your group. I know I will learn a lot.

Sue in Illinois

--

Sue

[Guest guest]

Hi Sue and welcome to a great group. DDD is degenerative disk disease.

Annie

karriemom@... wrote:

Thanks for the welcome. I'm still learning here...what is ddd?

--

Sue

---- vh herbaladysfriends@...> wrote:

Suffer pain and fatigue, but dang it I might have fibro

> and ddd, but it don't have me.

---------------------------------

You rock. That's why Blockbuster's offering you one month of Blockbuster Total

Access, No Cost.

[Guest guest]

Sue,

DDD = degenerative disk disease, which complicates our lovely disorder;

many here suffer from it, or spondylosis (another disk disorder) or

stenosis. In short, we're a mess....lolol....

I wonder if the correlation between car accidents and the onset of

fibro could be made? Many of us have had prior accidents that gave

us " whip lash " and we allegedly recovered, but what if we didn't? Food

for thought.....

And Sue, welcome aboard if I didn't welcome you personally. I think I

do and then figure I didn't - gotta love the fibro fog....

Darlene

> Suffer pain and fatigue, but dang it I might have fibro

> > and ddd, but it don't have me.

>

[Guest guest]

> > Suffer pain and fatigue, but dang it I might have fibro

> > > and ddd, but it don't have me.

> >

>