Guest guest Posted June 3, 2002 Report Share Posted June 3, 2002 hello everyone. I am very much enjoying this group and congratulate all of you for your courage and compassion. I've posted before. The short version of my story is that I was diagnosed with RA in April and on my last rheumatologist visit, he diagnosed me with fibromyalgia on top of that. Back in April I started a prednisone taper and plaquinil. As of 2 weeks ago, I am also taking 1000mg of sulfasalazine in morning and at night. The prednisone helped a bit with the RA pain and swelling but I'm off it now, thankfully, since I was starting to look like a chipmunk my cheeks were so swollen. I don't know if the plaquinil is working and the sulfasalazine has made me incredibly queasy ... yuk. But, the pain remains, mostly in my hands, feet and elbows ... at it's worst it is in my shoulders, chest, and hips too ... is that the fibromyalgia overlapping the RA? Anyway, my question is, what do people take for the pain and discomfort while waiting for the medicines to kick in (if they ever do). Aleve, Advil, Tylenol, none of them touch this pain in any reasonable dose. Is there anything I could ask my rheumatologist for? I'd prefer to avoid prednisone. The discomfort is really wearing me out and causing real fatigue. Seems like I'm good for about half the day and then I need to rest, preferably sleep. I haven't worked a full week in the past 3. Thanks very much. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2002 Report Share Posted June 3, 2002 Hi - I'm new to the group but noticed you live in MA also!! I live near the Worcester area. C. >From: " " <dat2352@...> >Reply- >< > >Subject: Re: [ ] pain and fatigue >Date: Mon, 3 Jun 2002 16:46:06 -0400 > >I've just got to answer this question. For me nothing touched the pain >even >taking 3 oxycodon at a time-didn't even make my brain feel better. I went >through a year of " experimentation " with various medications-methatrexate, >arava, A-sulfadine, several NSAI, remicade and enbrel. The remicade and >enbrel helped equally but not really for pain but for inflammation and >fatigue. Without them I slept 12 hours at night and 3 hours every >afternoon >and never felt well. I am on the enbrel because I have had many (5 in last >15 months) surgeries and it gets out of the system faster than the >remicade. >I'm not sure I believe the stuff about remicade and enbrel arresting the >joint damage because I have been on 1 or the other for almost 2 years and >have had my knee and hip both replaced in the last 7 months. Now joint >replacement does stop the pain at least in those joints. >Really it is not all gloom and doom-I have been mostly reading this list >for >quite awhile and decided that we are a tough bunch-we have to be and a >faithful bunch no matter how much we all suffer we believe in God and that >He's got a plan. Look at it this way- if God didn't know we were tough we >wouldn't have this so we are examples to others on endurance. >Now I also take lodine a NSAI which does help my shoulder which is my next >worst joint. Guess I'm lying when I say they don't help the pain because >with my hip replacement in April I couldn't use the enbrel for almost a >month and joints that never hurt hurt badly after 2 weeks and I was >sleeping >always. > > Temple >3 Fox Haven Way >Chelmsford, MA 01824 > >dat2352@... > >http://www.homestead.com/kuddlekrittersfarm/index.html FAMILY >http://www.homestead.com/kuddlekrittersdairygoats/index.html FARM >http://www.homestead.com/kuddlekraft/index.html CRAFTS > > > > _________________________________________________________________ Join the world’s largest e-mail service with MSN Hotmail. http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2002 Report Share Posted June 4, 2002 Glad you enjoy our group. Sorry about the dual diagnosis, but you have a lot of company here. I have both also and sometimes it¹s not easy distinguishing what is causing the pain, RA or FM. Sulfasalazine is a combination drug that works as both an anti-inflammatory and an antibiotic. It¹s been used for many years to treat RA, but like a lot of drugs it takes several weeks for it to start working. 6-12 weeks I the average. Here¹s some info about it: http://www.midwestarthritis.com/html/azulfidine.htm Hang in there and give the meds a chance to work. Hopefully your stomach queasiness will go away. That is a common side effect that most of the time goes away with time. I take Ultram for pain. It works the best for me. I also have taken vicodan. Hope you feel better. a On 6/3/02 3:36 PM, " charlin1958 " <stratton_c@...> wrote: > hello everyone. > > I am very much enjoying this group and congratulate all of you for > your courage and compassion. > > I've posted before. The short version of my story is that I was > diagnosed with RA in April and on my last rheumatologist visit, > he diagnosed me with fibromyalgia on top of that. Back in April I > started a prednisone taper and plaquinil. As of 2 weeks ago, I > am also taking 1000mg of sulfasalazine in morning and at night. > The prednisone helped a bit with the RA pain and swelling but > I'm off it now, thankfully, since I was starting to look like a > chipmunk my cheeks were so swollen. I don't know if the > plaquinil is working and the sulfasalazine has made me > incredibly queasy ... yuk. But, the pain remains, mostly in my > hands, feet and elbows ... at it's worst it is in my shoulders, > chest, and hips too ... is that the fibromyalgia overlapping the > RA? > Anyway, my question is, what do people take for the pain and > discomfort while waiting for the medicines to kick in (if they ever > do). Aleve, Advil, Tylenol, none of them touch this pain in any > reasonable dose. Is there anything I could ask my > rheumatologist for? I'd prefer to avoid prednisone. > The discomfort is really wearing me out and causing real fatigue. > Seems like I'm good for about half the day and then I need to > rest, preferably sleep. I haven't worked a full week in the past 3. > Thanks very much. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2010 Report Share Posted January 7, 2010 callaway19662003 wrote: > > ...she has said that once the tests come back normal > I should feel better. > > Is this statement true? Or is the pain and fatigue something that I will > have to live with the rest of my life? It is true if the pain and fatigue are due to hypoT. Unfortunately, there are other potential causes of pail and fatigue. You may need to see a different specialty. Chuck Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2010 Report Share Posted January 7, 2010 Probably about 95% of hypothyroid patients take one simple pill per day and lead a normal life. Unfortunately a small percentage of patients aren't so lucky and continue to have symptoms that range from mild to pure hell. In many cases conventional allopathic treatment seems to become MOL a hit or miss proposition and many patients resort to alternative methods. There are no supplements or such that will replace T4 but some people get relief from such things as Armour, which has T3 as well as T4. There's lots of info on the internet and elsewhere. Be aware that some of it might harm or kill you, so be careful. Luck, .. .. > > Posted by: " callaway19662003 " callaway19662003@... > <mailto:callaway19662003@...?Subject=%20Re%3APain%20and%20fatigue> > callaway19662003 <callaway19662003> > > > Wed Jan 6, 2010 7:17 pm (PST) > > > > > Hello, > > I found out 2 years ago that I am hypothyroid. What prompted me to get > tested was I was tired and in allot of pain in fingers and wrists. My > blood tests have been normal for at least 18 to 20 months. And yet the > pain and fatigue continues to get worse. I have been under the care of > an endocrinologist and she has said that once the tests come back normal > I should feel better. > > Is this statement true? Or is the pain and fatigue something that I will > have to live with the rest of my life? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2010 Report Share Posted January 7, 2010 " Is this statement true? Or is the pain and fatigue something that I will have to live with the rest of my life? " NO to both questions. Your thyroid meds could probably still be adjusted some even after your test results are 'normal'. That adjustment could make a big difference in how you feel. You should also have your vit D checked, if low it can add to the pain and fatigue considerably. You are probably also deficient in iodine, which will add to your symptoms as well. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2010 Report Share Posted January 7, 2010 Okay...I will get my latest test results and post them. I do want to add something else. My pain and fatigue got MUCH WORSE when I started taking 125 mcg of levothyroxine. Brad > > " Is this statement true? Or is the pain and fatigue something that I will have to live with the rest of my life? " > > NO to both questions. Your thyroid meds could probably still be adjusted some even after your test results are 'normal'. That adjustment could make a big difference in how you feel. > You should also have your vit D checked, if low it can add to the pain and fatigue considerably. You are probably also deficient in iodine, which will add to your symptoms as well. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2010 Report Share Posted January 8, 2010 Here are my test results. TSH 7.930 T4 1.1 T3 1.01 > > > > " Is this statement true? Or is the pain and fatigue something that I will have to live with the rest of my life? " > > > > NO to both questions. Your thyroid meds could probably still be adjusted some even after your test results are 'normal'. That adjustment could make a big difference in how you feel. > > You should also have your vit D checked, if low it can add to the pain and fatigue considerably. You are probably also deficient in iodine, which will add to your symptoms as well. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2010 Report Share Posted January 8, 2010 callaway19662003 wrote: > > > Here are my test results. > > TSH 7.930 T4 1.1 T3 1.01 > Technically, we need to have the reference ranges for the T4 and T3 to make sense, as these vary wildly around the world in different labs using different reagents. TSH is pretty standard, though, and 7.9 is unconscionably high under treatment. You need a dose that will get TSH around 2. Chuck Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2010 Report Share Posted January 8, 2010 My TSH stays around zero even since being back on T4 only. T3 and T4 are within range. CW -- Re: Re: Pain and fatigue callaway19662003 wrote: > > > Here are my test results. > > TSH 7.930 T4 1.1 T3 1.01 > Technically, we need to have the reference ranges for the T4 and T3 to make sense, as these vary wildly around the world in different labs using different reagents. TSH is pretty standard, though, and 7.9 is unconscionably high under treatment. You need a dose that will get TSH around 2. Chuck Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2010 Report Share Posted January 9, 2010 It's possible that your body is not turning the T4 into T3, but rather into RT3. This is what happened to me, so even though I was getting the T4 and T3 most of it was not getting into my cells.The only way to see if this is happening is to have an RT3 test. The doctors don't want to order the test because then they have to admit that their treatment is not helping the patient. Roni <>Just because something isn't seen doesn't mean it's not there<> > > > Here are my test results. > > TSH 7.930 T4 1.1 T3 1.01 > Technically, we need to have the reference ranges for the T4 and T3 to make sense, as these vary wildly around the world in different labs using different reagents. TSH is pretty standard, though, and 7.9 is unconscionably high under treatment. You need a dose that will get TSH around 2. Chuck Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2010 Report Share Posted January 9, 2010 Im sorry.Ive been hypo for at least 2 years and i still dont understand completely the test results. So here are the ranges as it shows on the results. TEST NAME TSH FREE T4 TOTAL T3 REFERANCE 0.300- 5.00 0.8-2.0 0.90-2.10 UNITS UTU/ML NG/DL NG/ML 7.930 1.1 1.01 > > > > > > Here are my test results. > > > > TSH 7.930 T4 1.1 T3 1.01 > > > > Technically, we need to have the reference ranges for the T4 and T3 to > make sense, as these vary wildly around the world in different labs > using different reagents. > > TSH is pretty standard, though, and 7.9 is unconscionably high under > treatment. You need a dose that will get TSH around 2. > > Chuck > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2010 Report Share Posted January 9, 2010 Roni, Is that something I could ask my doctor...to do the RT3 test? I am suffering so badly. I am not suicidal but there are somedays I wish I would not wake up to this absolute hell. My endocrinologist doesnt know what else to do. I have a feeling that doctors dont care how I feel but more care to get my thyroid levels in the acceptable range and thats it. They show no feelings and act more like robots. For the last 6 months are so I have given up on feeling getting better..Im losing my will. I dont know what to do. So this is why Im on here. Other than telling my doctors that I hurt all over I dont know what to say to them. I appreciate any help! Thanks, Brad > > > > > > Here are my test results. > > > > TSH 7.930 T4 1.1 T3 1.01 > > > > Technically, we need to have the reference ranges for the T4 and T3 to > make sense, as these vary wildly around the world in different labs > using different reagents. > > TSH is pretty standard, though, and 7.9 is unconscionably high under > treatment. You need a dose that will get TSH around 2. > > Chuck > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2010 Report Share Posted January 9, 2010 The link below answers a lot of questions. http://thyroid-rt3.com/ After reading all this, I would ask to be tested for Free T3, Free T4, Rt3 and TSH all together. If your doctor objects, try reasoning with him/her. It won't do any harm to check and see if you have this problem, and as of right now you feel like you're dying. Please help me. The doctor that I went through all of this with was my rheumatologist. I went in and gave him all the symptoms I was having and he had lots of blood tests done and a special test for an illness with three names to it (can't remember the names). Everything pretty much came back normal. Then he said maybe we should check your thyroid. At that point I asked if we could check for the tests above and he said all right. Good luck. Roni <>Just because something isn't seen doesn't mean it's not there<> From: callaway19662003 <callaway19662003@...> Subject: Re: Pain and fatigue hypothyroidism Date: Friday, January 8, 2010, 10:51 PM Roni, Is that something I could ask my doctor...to do the RT3 test? I am suffering so badly. I am not suicidal but there are somedays I wish I would not wake up to this absolute hell. My endocrinologist doesnt know what else to do. I have a feeling that doctors dont care how I feel but more care to get my thyroid levels in the acceptable range and thats it. They show no feelings and act more like robots. For the last 6 months are so I have given up on feeling getting better..Im losing my will. I dont know what to do. So this is why Im on here. Other than telling my doctors that I hurt all over I dont know what to say to them. I appreciate any help! Thanks, Brad > > > > > > Here are my test results. > > > > TSH 7.930 T4 1.1 T3 1.01 > > > > Technically, we need to have the reference ranges for the T4 and T3 to > make sense, as these vary wildly around the world in different labs > using different reagents. > > TSH is pretty standard, though, and 7.9 is unconscionably high under > treatment. You need a dose that will get TSH around 2. > > Chuck > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2010 Report Share Posted January 9, 2010 callaway19662003 wrote: > > > Im sorry.Ive been hypo for at least 2 years and i still dont understand > completely the test results. So here are the ranges as it shows on the > results. > > TEST NAME TSH FREE T4 TOTAL T3 > REFERANCE 0.300- 5.00 0.8-2.0 0.90-2.10 > UNITS UTU/ML NG/DL NG/ML > 7.930 1.1 1.01 Thanks for sharing the ranges. The fact that FT4 and TT3 are both at the low end of the reference range is consistent with the very high TSH. I would expect when you get a higher dose, so that TSH is around 2, that your FT4 and TT3 will both be closer to the high end of the reference range. If your doctor will not prescribe a high enough dose to accomplish this, you should definitely look for a new doctor. The fact that after two years, your TSH is still this high seems negligent to this amateur. Chuck Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2010 Report Share Posted January 25, 2010 Hello, Since my last post I started taking and recording my temperature. For the last few weeks it has been averaging 2 degrees below nowmal. I have even had temps as low as 95.5. Is this abnormal and does it seem like it could be wilsons temp.syndrome. Brad > > > > > > > > > Here are my test results. > > > > > > TSH 7.930 T4 1.1 T3 1.01 > > > > > > > Technically, we need to have the reference ranges for the T4 and T3 to > > make sense, as these vary wildly around the world in different labs > > using different reagents. > > > > TSH is pretty standard, though, and 7.9 is unconscionably high under > > treatment. You need a dose that will get TSH around 2. > > > > Chuck > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2010 Report Share Posted September 8, 2010 not that i really want to talk about this,but my son keeps telling me all the time that medical marijuana is my answer... maybe he is right, i have so much pain, and i don't sleep til i basically can't stay awake any longer, and i too get tired during the day,but my husband doesn't " understand " this... i also tend to my 2 almost 3 yrs old g'baby, who is Very Active... sometimes more often than not i really OVERDO it... what can i do? the family just doesn't understand it. and i have run out of the explanations for them... please help if you can... also i suffer from chronic pain, i just recently had cervical neck surgery where the surgeon removed 3 discs and replaced it with a titanium plate and 4 screws.. he hasn't given me any pain meds, plus he took it upon himself to take me off of what i was on prior to going into surgery without my approval or knowlege...it was a strong medicine...i could have had a possible fatal outcome.. and he has no remorse at all for it, i told him that i was already trying to wein myself off as it was before having the surgery...why would any dr take you off of a pain med and then NOT give you anything at all for pain after such a major surgery?? so many have told me that this is a possible lawsuit? along with some of the other things he did or didn't do?? any suggestions?? take care all..GOD BLESS tracey From: <erj66@...> Subject: Re: Sleep Problems Date: Tuesday, September 7, 2010, 12:45 PM Well, I hate to mention it, as Gretchen often gets upset, but if you are in a medical marijuana state, medical marijuana is now -proven- efficacious with 4 FDA " Gold Standard, " patient trials to combat both neuropathic pain and sleeplessness, with the researchers quoted as saying... " Inhaled cannabis reduces pain and improves sleep compared to placebo, and is well tolerated by patients with chronic neuropathy, according to clinical trial data published this week in the Journal of the Canadian Medical Association (CMAJ). Investigators at McGill University in Montreal assessed the efficacy of inhaled cannabis on pain intensity in 23 subjects with chronic post-traumatic or post-surgical neuropathic pain in a randomized, double-blind, placebo-controlled crossover trial. Participants in the study received a single inhalation of 25 mg of 9.4 percent herbal cannabis or placebo three times daily. All of the volunteers in the study suffered from refractory pain for which conventional therapies had proven ineffective. Researchers reported: “[H]erbal cannabis … significantly reduced average pain scores compared with … cannabis placebo in adult participants. … We found significant improvement in measures of sleep quality and anxiety. … Our results support the claim that smoked cannabis reduces pain, improves mood, and helps sleep.†Emphases added by me. But further, I think this is a problem with fatigue during the day, and not sleep problems per se. I need more than 8 hours myself, usually 9. But this does not keep me from needing actual rest between 3 and 6 P.M, and it keeps me from doing much after 11 P.M. So here is the hard part... this may be a permanent feature of your life, as it is of mine and many other CMTers, just downright fatigue because it is simply harder to get through a day with CMT. It is a great deal of work for your working muscles and your brain to get you around without what is currently bothering you with CMT. By permanent feature, I mean you may have to start living at a lower level of activity. This means you have to carefully pick what you do, and plan rest periods accordingly. Another thing is that the activities you currently do may have to be curtailed in some way. I know that bicycling through the foothills in of the German Alps in extreme Southern Germany where I lived and worked for a period in the 90s... it was fun and nice, but it was too much output, and it seriously reduced my ability to work through the day. So you may have to examine more than just sleep problems when trying to find an equilibrium with which you can live. This is just my experience, and I hope it helps. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2010 Report Share Posted September 8, 2010 Tracey, If your doc discontinued your medications before surgery, there was a reason. Some of them, even something like Naprosyn, must be discontinued before surgery because they can cause excessive blood loss. You just had major surgery on your body. This is stress. Give your body a break for 6 months to recover well. Ask your doctor if you can have something like Ultram for pain, perhaps also one of the newer medications during this time. You may also want to start taking Vitamin E which research has aproved effective. It's sweet to play with your grandson, but yes, overdoing it, especially now since surgery may be too much. As for your sleep, best to keep regular meal schedules and regular sleep schedules. Wind down about 7 in the evening, have some quiet time to yourself. Sit in a special place, shut your eyes, breathe deeply and mentally focus on something pleasant or enjoyable. Afterwards, take a hot shower/bath, then do some reading from a good novel. Your body will get used to this after awhile. You will need to take care of yourself, FIRST. Gretchen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2010 Report Share Posted September 8, 2010 thanks for the advice,but this dr did NOT take me off of it before surgery, nor did he say that he wanted me off of it prior to surgery, he gave it to me during my stay in ICU and Recovery but as soon as he sent me to the floor he decided to take me off of it, without talking to me about it... i think he should have at least mentioned this prior to him doing this rather than to just have the nurses tell me what he wanted done... i mean he was the one getting paid.. he has not explained anything throughout the surgery, i don't mean to sound ugly, please don't take me that way.. i just know that i have had other surgerys (sp) and have NEVER been as scared as i was this time, i tried to express this to my husband and to the medical staff, it was almost as if GOD was saying WAIT for a lil longer... and i now feel like i didn't listen to GOD... when i expressed these feelings the anesthesiologist said oh we are gonna give you something to calm you down, that was the last thing i remember til waking up the next day.....as for my granddaughter, well yes i do know that i do overdo it with her, and you are most right i do need to take care of me, but i have yet to figure out just how to do that. i am so used to doing for others....i am curious as to what you would think about this dr giving me Lyrica.. told me to Stop taking my neurotin that i have been taking for years as well, so i just called my neurologist office to double check.. they said for me to wein off of it, NOT to just STOP taking it as i was told...so i just don't know about this surgeon i really don't think he is aware of the medications and the side effects?? i know i could be wrong on this.. but this time i honestly feel that i am right..thanks again...GOD BLESS YOU....tracey --- On Wed, 9/8/10, -owner <-owner > wrote: From: -owner <-owner > Subject: Re: pain and fatigue Date: Wednesday, September 8, 2010, 12:08 PM  Tracey, If your doc discontinued your medications before surgery, there was a reason. Some of them, even something like Naprosyn, must be discontinued before surgery because they can cause excessive blood loss. You just had major surgery on your body. This is stress. Give your body a break for 6 months to recover well. Ask your doctor if you can have something like Ultram for pain, perhaps also one of the newer medications during this time. You may also want to start taking Vitamin E which research has aproved effective. It's sweet to play with your grandson, but yes, overdoing it, especially now since surgery may be too much. As for your sleep, best to keep regular meal schedules and regular sleep schedules. Wind down about 7 in the evening, have some quiet time to yourself. Sit in a special place, shut your eyes, breathe deeply and mentally focus on something pleasant or enjoyable. Afterwards, take a hot shower/bath, then do some reading from a good novel. Your body will get used to this after awhile. You will need to take care of yourself, FIRST. Gretchen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2010 Report Share Posted September 9, 2010 Tracey, I know it's hard, but you do need to ask your doctor the questions. Be still for awhile and write down everything that comes to mind. Before back surgery I had a TON of questions about everything, then after I had a TON more. I questioned each nurse in the hospital exactly what the medication given to me was. Speak up to the docs and other professionals! They are in no way Gods, and you have every RIGHT to get understandable answers to all your questions. My personal experience with Neurontin was to start, increase gradually by 100 mg per day for 3 days to dose level. Did the reverse a year later, decreased by 100 mg for 3 days. It worked. I don't have any experience with Lyrica, although I understand it works well for neuropathic pain. Whether or not it works on post-op pain, I don't know. Gretchen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2010 Report Share Posted September 16, 2010 Tracey, Your son is correct. if you live in a state that condones and legalizes medical marijuana it is a enormous help. I have had open heart surgery, artritist (sp), and CMT that has robbed me of my legs. I use blue rocker AFOs to walk with the help of trekking sticks. I stopped using all of the prescription meds over two years ago, and have not regretted it once. I use a vaporizer to get the THC effects and do not smoke it. It has really helped. Hope this helps. Lester Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2010 Report Share Posted September 16, 2010 I, too, have been able to reduce or end taking three prescription meds, as the cannabis does such a good job. It is most effective in the peripheral nervous system and most helpful with neuropathic pain, which is the type,of pain from CMT's nerve damage. > > [Non-text portions of this message have been re Quote Link to comment Share on other sites More sharing options...
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