Guest guest Posted March 22, 2007 Report Share Posted March 22, 2007 Hi , I've heard that said many times - that it's like chemo. Or " poisoned " as the new gal (sorry, no brain for names or energy to look for it) put it. Aylwin _____ From: CFAlliance [mailto:CFAlliance ] On Behalf Of sarah Sent: Thursday, March 22, 2007 6:55 AM To: CFAlliance Subject: Re: new member I always wonder if we feel similar to chemo patients without the hair loss. Having never gone through chemo, I don't know. English Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2007 Report Share Posted March 22, 2007 Welcome from a fellow Missourian! I'm a bit late on posting this, so I'm sure you've already experienced some great advice and support from this group. I'm in St. Louis, married 21 yrs, with 3 kids too. Diagnosed with CFS in 1999, and FM in 2007 (who knew? lol) Take care, STL Jane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2007 Report Share Posted March 22, 2007 > >> >> >Thankyou nne! I also live in MO. >> > >> > welcome rachel > iknow you will like this group > god bless > marianne > mo > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2007 Report Share Posted March 22, 2007 Brain fog meets email, oh joy.<grin> Aylwin ps sorry 'bout that! _____ From: CFAlliance [mailto:CFAlliance ] On Behalf Of Dorie S Sent: Thursday, March 22, 2007 10:46 AM To: CFAlliance Subject: Re: Re: new member There's a small mistake here. I didn't post that, I was being spoken " to " in this regard. I don't get this feeling, thankfully; I have enough other stuff. Doreen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2007 Report Share Posted March 23, 2007 >Thankyou Jane! Welcome from a fellow Missourian! I'm a bit late on posting this, > so I'm sure you've already experienced some great advice and support from > this group. I'm in St. Louis, married 21 yrs, with 3 kids too. Diagnosed > with CFS in 1999, and FM in 2007 (who knew? lol) > Take care, > STL Jane > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2007 Report Share Posted March 23, 2007 What a bunch of hogwash. Doctors really need to get on the band wagon here and educate themselves and quite treating patients like they are worthless and not worth treating because they don't believe in it or whatever. I really feel for both of you. Sandrea new member Hi, my name is becky. I have cfs,fm, ddd, djd, sarcoidosis.i might not post much due to the brain fog. but,I do read the posting.I did want to let you know that their was someone out there that is learning so much from your site. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2007 Report Share Posted March 23, 2007 Hi Becky, It's nice to meet you. Sorry for your all-too-typical medical experience. This is just exactly what I meant by my recent post on oral surgery. If we don't all fit neatly packaged into what is convenient and easy for THEM, and is 'supposed to' work for everyone, then we are written off as not worth the bother to treat, by 'most' of them. Sometimes there is a caring one here and there, but they are very difficult to find indeed. My former general dentist, who had to retire early because of getting carpal tunnel in both hands, would always do what I needed, and do it my way. He and his staff didn't even call it 'special needs'. It was wonderful. The dentist I see now is the only one in the whole community who was willing to take on his patients when he retired from disability. I've even learned that dentists and their assitants wear gloves to protect 'themselves' from 'us', and not vice versa. A friend told me they picked something up that had fallen on the floor and continued using it in her mouth. It is all such a discouragement. We are treated as worthless because of our unvalidated conditions. It is discrimination and intolerance on their part anyway; because illness is illness no matter what the cause or reason. Doreen new member Hi, my name is becky. I have cfs,fm, ddd, djd, sarcoidosis.i might not post much due to the brain fog. but,I do read the posting.I did want to let you know that their was someone out there that is learning so much from your site. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2007 Report Share Posted March 23, 2007 Hi Becky! It's so nice to know your out there ...feel free to write even with the brain fog as I think we can all relate, can read typoneeze and sometimes we forget what we read the next day so repeating yourself is acceptable too! Where could you go wrong?? Oh...long winded? I dont mean to hurt yer feelings but that ones been cornered already...just can't remember who it was! If a Doctor could turn a patient away saying " you can't afford me " I don't think I would return even if I had the money to do so. I would be looking for not just a doc that knows what he's doing but most of all ...one with compassion and sensitive enough to listen. I have one! When I had a good day and told him so...my doctor got all misty eyed even though he had the biggest smile on his face! Now, that's a Doctor that has alot invested in ME! Not myalgic Enceph...but me, I, ! Again, welcome to the group as I know there are many more just like you that do alot of reading but have not posted yet...WE KNOW WHO YOU ARE!! lol Well hun, Im exhausted. I have brochitis, sinis probs, temps, sore throat so I'm goin to rest a bit. God Bless! > Hi, my name is becky. I have cfs,fm, ddd, djd, sarcoidosis.i might not > post much due to the brain fog. but,I do read the posting.I did want to > let you know that their was someone out there that is learning so much > from your site. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2007 Report Share Posted March 26, 2007 Welcome , I am relatively new also and share your sentiments about this group. It really is very nice to have someone to talk to who understands and doesn't start in on what you should do to pull yourself together. I look forward to hearing more from you. English Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2007 Report Share Posted March 26, 2007 I have a Celebrity scooter which I love. It was quite expensive and I have a lift that puts it into my van. I live in ME so protecting it from the weather is an issue. I also can't lift even the lightest scooters, so couldn't do one of those even though it was cheaper. I chose the celebrity because it has different hand controls than the others and is easier on my hands. I got the four wheel one as it is more stable and my balance is not always the greatest. Also, I really want to be able to walk my dogs and mine are big dogs and could pull me over on the three wheeled scooters. I also need to be able to use mine in snow and mud in parking lots and the four wheel one is better for traction. However, in hindsight, since mostly I use it indoors in places, the three wheel one is easier to maneuver and get down aisles and such. I'll be glad to answer any questions you may have. Evidently, I am too mobile to qualify for a scooter under Medicare and I am fighting with my private insurance to get the scooter covered. Their latest argument is that I should use a manual wheelchair if fatigue and nausea/dizziness keeps me from standing. So I am now appealing as I am not able to use my arms and hands due to pain issues. How they think someone so fatigued could manage a manual wheelchair even without the hand stuff is kind of crazy. Sandrea New member Let me apologize in advance for the length of this posting....... I haven't been a member very long and have been reading the posting to get a feel for the group. Now, after realizing how much we all seem to have in common and how wonderfully compassionate all of you seem to be, I feel comfortable enough to post info about myself and start to join in the group discussions. (and yes, I have aquired some trust issues over the years dealing with these illnesses, as most of you can probably relate too.) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2007 Report Share Posted March 26, 2007 , I am glad you chatted, I am Debbie AKA Deb R as there are lots of Debs here, I live in Tacoma,Washington. I was you about a year ago until I finally started to post and these people are all soo amazing!!! It is nice to know that others believe in us. Can I ask about the neck stuff as I have some major problems with mine and your sugery is an option to me but I am scared, I am 30 and have had this for quite some time now but I understand if you do not want to share. Anyways, welcome welcome, glad you are here, Deb R --- wrote: > Let me apologize in advance for the length of this > posting....... > > I haven't been a member very long and have been > reading the posting > to get a feel for the group. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2007 Report Share Posted March 26, 2007 Welcome, Welcome Welcome and thanks for sharing your story too! This group is a Godsend for me, as well as I guess.........EVERYBODY here. There is a peace that comes with the knowledge we are NOT alone or CRAZY! I've had those doctors too. As you've mentioned this is such a compassionate group and they've never let me down! Take good care of yourself and see you soon, STL Jane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2007 Report Share Posted March 26, 2007 Hi , welcome! Yes, isn't it just amazing what we all have in common.it is truly lovely to come here where we are understood and appreciated just for being us, not because of the endless Doing. Take Care, Aylwin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2007 Report Share Posted March 26, 2007 Dear , I'm glad to meet you and that you have written to the group. It's so great to have a place to say anything we want and not be laughed or scoffed at. The best to you always, and I look forward to hearing from you again. Hugs, Doreen (60) Eugene, Oregon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2007 Report Share Posted March 26, 2007 , I'm new to this group. It's amazing to see that people out there are suffering from the same symptoms. I don't feel so bad now. I have limited my friends down to a few, because I'm just sick of hearing the lectures from all those know it alls. It's nice to come here and read the posts, of all that have common problems. Jodie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2007 Report Share Posted March 27, 2007 Welcome to the group. Looking forward to learning more about you. Great group. Blair Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2007 Report Share Posted March 27, 2007 Hi , I enjoyed reading your bio and you may not realise but you give us strength with your presence too! It is good to compare notes so to speak, keeps us knowing that we arn't so different from others or that it could always be worse.... About tremors, I have my fair share too! It started with my hands if you dont count involentary movements, jerks, twitches. There are times that it's so bad that I cannot use my mouse as all of the sudden involentarily my arm will jerk sending my mouse accross the screen. If I try to reacha forward (wish nothing supporting my arm) my hand bobs like parkinson's. LIsa, about your eye movements. I think I would get that checked out if nobody has information on what that eye movement is. I have forgotten but it's more serious than changes in site or I thought. It seems someone else in this group spoke about that kind of movement in their eyes. Perhaps they will post about it to you. You never have to apologise for how many words you use in your post. We are free to say what we want in as many words as we need. :-) God Bless and Welcome again! > Let me apologize in advance for the length of this posting....... > > I haven't been a member very long and have been reading the posting > to get a feel for the group. Now, after realizing how much we all > seem to have in common and how wonderfully compassionate all of you > seem to be, I feel comfortable enough to post info about myself and > start to join in the group discussions. (and yes, I have aquired > some trust issues over the years dealing with these illnesses, as > most of you can probably relate too.) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2007 Report Share Posted March 28, 2007 Deb, I don't mind sharing info about my neck, that's why we're here :-) I have degenerative disk desease and my first fusion was done when I was about 37, but I had been having problems for a few years before that. I was in constant pain in my arms/hands/etc, but almost immediately after the surgery it was gone. The doc (a neurosurgeon) did a fusion at C5/C6 (using bone from my hip and no metal plate) unfortunatly for me, my bones didn't mend well and I started having problems again. A few years later I had another fusion at C5/C6/C7 (using donated bone and a metal plate). The 2nd surgery was with a different doc (an orthopedic surgeon who specialized in the spine). Recovery after the 2nd surgery was much better, because of the plate that was installed. And, I know it's just psychological but I also feel more secure about my disks staying put. It is a tough decision to make regarding surgery. I have two suggestions 1) Find a GOOD doctor that specializes in spinal surgery and 2) The longer you wait the more nerve damage there is and nerves don't repair themselves. I have some residual nerve damage that will never go away. Hope this information helps and if you have any more quesitons, just holler. > > , > I am glad you chatted, I am Debbie AKA Deb R as there > are lots of Debs here, I live in Tacoma,Washington. I > was you about a year ago until I finally started to > post and these people are all soo amazing!!! It is > nice to know that others believe in us. Can I ask > about the neck stuff as I have some major problems > with mine and your sugery is an option to me but I am > scared, I am 30 and have had this for quite some time Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2007 Report Share Posted March 28, 2007 Deb, I don't mind sharing info about my neck, that's why we're here :-) I have degenerative disk desease and my first fusion was done when I was about 37, but I had been having problems for a few years before that. I was in constant pain in my arms/hands/etc, but almost immediately after the surgery it was gone. The doc (a neurosurgeon) did a fusion at C5/C6 (using bone from my hip and no metal plate) unfortunatly for me, my bones didn't mend well and I started having problems again. A few years later I had another fusion at C5/C6/C7 (using donated bone and a metal plate). The 2nd surgery was with a different doc (an orthopedic surgeon who specialized in the spine). Recovery after the 2nd surgery was much better, because of the plate that was installed. And, I know it's just psychological but I also feel more secure about my disks staying put. It is a tough decision to make regarding surgery. I have two suggestions 1) Find a GOOD doctor that specializes in spinal surgery and 2) The longer you wait the more nerve damage there is and nerves don't repair themselves. I have some residual nerve damage that will never go away. Hope this information helps and if you have any more quesitons, just holler. > > , > I am glad you chatted, I am Debbie AKA Deb R as there > are lots of Debs here, I live in Tacoma,Washington. I > was you about a year ago until I finally started to > post and these people are all soo amazing!!! It is > nice to know that others believe in us. Can I ask > about the neck stuff as I have some major problems > with mine and your sugery is an option to me but I am > scared, I am 30 and have had this for quite some time Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2007 Report Share Posted March 28, 2007 Deb, I don't mind sharing info about my neck, that's why we're here :-) I have degenerative disk desease and my first fusion was done when I was about 37, but I had been having problems for a few years before that. I was in constant pain in my arms/hands/etc, but almost immediately after the surgery it was gone. The doc (a neurosurgeon) did a fusion at C5/C6 (using bone from my hip and no metal plate) unfortunatly for me, my bones didn't mend well and I started having problems again. A few years later I had another fusion at C5/C6/C7 (using donated bone and a metal plate). The 2nd surgery was with a different doc (an orthopedic surgeon who specialized in the spine). Recovery after the 2nd surgery was much better, because of the plate that was installed. And, I know it's just psychological but I also feel more secure about my disks staying put. It is a tough decision to make regarding surgery. I have two suggestions 1) Find a GOOD doctor that specializes in spinal surgery and 2) The longer you wait the more nerve damage there is and nerves don't repair themselves. I have some residual nerve damage that will never go away. Hope this information helps and if you have any more quesitons, just holler. > > , > I am glad you chatted, I am Debbie AKA Deb R as there > are lots of Debs here, I live in Tacoma,Washington. I > was you about a year ago until I finally started to > post and these people are all soo amazing!!! It is > nice to know that others believe in us. Can I ask > about the neck stuff as I have some major problems > with mine and your sugery is an option to me but I am > scared, I am 30 and have had this for quite some time Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2007 Report Share Posted March 28, 2007 Deb, I don't mind sharing info about my neck, that's why we're here :-) I have degenerative disk desease and my first fusion was done when I was about 37, but I had been having problems for a few years before that. I was in constant pain in my arms/hands/etc, but almost immediately after the surgery it was gone. The doc (a neurosurgeon) did a fusion at C5/C6 (using bone from my hip and no metal plate) unfortunatly for me, my bones didn't mend well and I started having problems again. A few years later I had another fusion at C5/C6/C7 (using donated bone and a metal plate). The 2nd surgery was with a different doc (an orthopedic surgeon who specialized in the spine). Recovery after the 2nd surgery was much better, because of the plate that was installed. And, I know it's just psychological but I also feel more secure about my disks staying put. It is a tough decision to make regarding surgery. I have two suggestions 1) Find a GOOD doctor that specializes in spinal surgery and 2) The longer you wait the more nerve damage there is and nerves don't repair themselves. I have some residual nerve damage that will never go away. Hope this information helps and if you have any more quesitons, just holler. > > , > I am glad you chatted, I am Debbie AKA Deb R as there > are lots of Debs here, I live in Tacoma,Washington. I > was you about a year ago until I finally started to > post and these people are all soo amazing!!! It is > nice to know that others believe in us. Can I ask > about the neck stuff as I have some major problems > with mine and your sugery is an option to me but I am > scared, I am 30 and have had this for quite some time Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2007 Report Share Posted March 28, 2007 Deb, I don't mind sharing info about my neck, that's why we're here :-) I have degenerative disk desease and my first fusion was done when I was about 37, but I had been having problems for a few years before that. I was in constant pain in my arms/hands/etc, but almost immediately after the surgery it was gone. The doc (a neurosurgeon) did a fusion at C5/C6 (using bone from my hip and no metal plate) unfortunatly for me, my bones didn't mend well and I started having problems again. A few years later I had another fusion at C5/C6/C7 (using donated bone and a metal plate). The 2nd surgery was with a different doc (an orthopedic surgeon who specialized in the spine). Recovery after the 2nd surgery was much better, because of the plate that was installed. And, I know it's just psychological but I also feel more secure about my disks staying put. It is a tough decision to make regarding surgery. I have two suggestions 1) Find a GOOD doctor that specializes in spinal surgery and 2) The longer you wait the more nerve damage there is and nerves don't repair themselves. I have some residual nerve damage that will never go away. Hope this information helps and if you have any more quesitons, just holler. > > , > I am glad you chatted, I am Debbie AKA Deb R as there > are lots of Debs here, I live in Tacoma,Washington. I > was you about a year ago until I finally started to > post and these people are all soo amazing!!! It is > nice to know that others believe in us. Can I ask > about the neck stuff as I have some major problems > with mine and your sugery is an option to me but I am > scared, I am 30 and have had this for quite some time Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2007 Report Share Posted March 28, 2007 Deb, I don't mind sharing info about my neck, that's why we're here :-) I have degenerative disk desease and my first fusion was done when I was about 37, but I had been having problems for a few years before that. I was in constant pain in my arms/hands/etc, but almost immediately after the surgery it was gone. The doc (a neurosurgeon) did a fusion at C5/C6 (using bone from my hip and no metal plate) unfortunatly for me, my bones didn't mend well and I started having problems again. A few years later I had another fusion at C5/C6/C7 (using donated bone and a metal plate). The 2nd surgery was with a different doc (an orthopedic surgeon who specialized in the spine). Recovery after the 2nd surgery was much better, because of the plate that was installed. And, I know it's just psychological but I also feel more secure about my disks staying put. It is a tough decision to make regarding surgery. I have two suggestions 1) Find a GOOD doctor that specializes in spinal surgery and 2) The longer you wait the more nerve damage there is and nerves don't repair themselves. I have some residual nerve damage that will never go away. Hope this information helps and if you have any more quesitons, just holler. > > , > I am glad you chatted, I am Debbie AKA Deb R as there > are lots of Debs here, I live in Tacoma,Washington. I > was you about a year ago until I finally started to > post and these people are all soo amazing!!! It is > nice to know that others believe in us. Can I ask > about the neck stuff as I have some major problems > with mine and your sugery is an option to me but I am > scared, I am 30 and have had this for quite some time Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2007 Report Share Posted March 28, 2007 Deb, I don't mind sharing info about my neck, that's why we're here :-) I have degenerative disk desease and my first fusion was done when I was about 37, but I had been having problems for a few years before that. I was in constant pain in my arms/hands/etc, but almost immediately after the surgery it was gone. The doc (a neurosurgeon) did a fusion at C5/C6 (using bone from my hip and no metal plate) unfortunatly for me, my bones didn't mend well and I started having problems again. A few years later I had another fusion at C5/C6/C7 (using donated bone and a metal plate). The 2nd surgery was with a different doc (an orthopedic surgeon who specialized in the spine). Recovery after the 2nd surgery was much better, because of the plate that was installed. And, I know it's just psychological but I also feel more secure about my disks staying put. It is a tough decision to make regarding surgery. I have two suggestions 1) Find a GOOD doctor that specializes in spinal surgery and 2) The longer you wait the more nerve damage there is and nerves don't repair themselves. I have some residual nerve damage that will never go away. Hope this information helps and if you have any more quesitons, just holler. > > , > I am glad you chatted, I am Debbie AKA Deb R as there > are lots of Debs here, I live in Tacoma,Washington. I > was you about a year ago until I finally started to > post and these people are all soo amazing!!! It is > nice to know that others believe in us. Can I ask > about the neck stuff as I have some major problems > with mine and your sugery is an option to me but I am > scared, I am 30 and have had this for quite some time Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2007 Report Share Posted March 28, 2007 Deb, I don't mind sharing info about my neck, that's why we're here :-) I have degenerative disk desease and my first fusion was done when I was about 37, but I had been having problems for a few years before that. I was in constant pain in my arms/hands/etc, but almost immediately after the surgery it was gone. The doc (a neurosurgeon) did a fusion at C5/C6 (using bone from my hip and no metal plate) unfortunatly for me, my bones didn't mend well and I started having problems again. A few years later I had another fusion at C5/C6/C7 (using donated bone and a metal plate). The 2nd surgery was with a different doc (an orthopedic surgeon who specialized in the spine). Recovery after the 2nd surgery was much better, because of the plate that was installed. And, I know it's just psychological but I also feel more secure about my disks staying put. It is a tough decision to make regarding surgery. I have two suggestions 1) Find a GOOD doctor that specializes in spinal surgery and 2) The longer you wait the more nerve damage there is and nerves don't repair themselves. I have some residual nerve damage that will never go away. Hope this information helps and if you have any more quesitons, just holler. > > , > I am glad you chatted, I am Debbie AKA Deb R as there > are lots of Debs here, I live in Tacoma,Washington. I > was you about a year ago until I finally started to > post and these people are all soo amazing!!! It is > nice to know that others believe in us. Can I ask > about the neck stuff as I have some major problems > with mine and your sugery is an option to me but I am > scared, I am 30 and have had this for quite some time Quote Link to comment Share on other sites More sharing options...
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