[lindkaye]

Hi there;
Need your expert opinions! I can't go on with this severe muscle ache and pain everywhere! In the am I can't bend my hands for a cup, can't lift my arms up because of pain in the shoulders, etc - all over. I am now thinking it might be one of the meds. When I was diagnosed - this aching pain was not part of the problem - have the RSD in my right knee/foot. Only after starting the meds it came on. When I questioned my PM dr - he stated it just might be a referred pain from the RSD.??? If it was in a couple places maybe - but my whole body? In reading up on Lyrica - I have a feeling it might be the problem. I take Lyrica, Oxycode, Methadone, Cymbalta, and Levothyroxine (for thryoid). Has anyone had this problem and it turned out to be Lyrica? I have not had the weight gain with the Lyrica as others have. How has other's weaned off of Lyrica? Right now I have been taking it 3 times a day - 50 mg ea. Do you think a couple of days lowering it by each pill - or should I make it longer? I just cannot go on with this ache any longer. My RSD pain has been better - and I am hoping it wont get worse coming off. Other delimma I have is I was diagnosed with MS and now have to start shots for that. Get this - side effects are up to 6 months flu like symptoms. Oh joy! I have to get my aching under some type of control before I start that treatment or I will be jumping off a cliff! Sorry to complain - its just I had planned on taking the whole family to church for Easter - and I couldn't even get out of bed. I'm tired of everything revolving around me not feeling well -its not fair to everyone else. I apologize for the complaints - thank you for listening and if you have any ideas or suggestions - please let me know. Happy Easter.

[dennyfan]

Lindkaye, How did you start taking the Lyrica? DId you gradually go up or start on a high dose? If you gradually went up I would go back off the same way. But I would talk to my doctor about changing you to something else. There are others meds out there that people use in place of Lyrica. Lyrica didnt work at all for me so I take Topamax. Others take Neurontin (gabapentin). There are other choices. I am sorry you have been diagnosed with MS too. Its got to be so difficult. Dont feel bad about not having this under control yet. Its a day to day thing for alot of us. Good luck & if you do this without your doctor be careful.
Hugs, Denny

[tjbird]

lindkaye,
I used to be on the methadone until I started getting some strange happenings. But while I was on it between the edema that I had from the RSD and the extra fluid from the methadone, my pd put me on Lyrica but I was only on it for a month as it gave me even more swelling. How long have you been on it and has your pd recomended that you go off of it? If your pd is taking you off of it he should tell you how to do it. If you are going off of it by yourself you will have to ask someone else that have been on it for a long period of time, and with all these good people here you should get some recomenations, mine would be ask your pd and tell them why you want to go off of it. Maybe not the answer that you wanted but things get complicated when you are on multiple meds.
Be Safe!
tjbird

[CRPSbe]

Originally Posted by lindkaye

I can't go on with this severe muscle ache and pain everywhere! In the am I can't bend my hands for a cup, can't lift my arms up because of pain in the shoulders, etc - all over. I am now thinking it might be one of the meds. When I was diagnosed - this aching pain was not part of the problem - have the RSD in my right knee/foot. Only after starting the meds it came on. When I questioned my PM dr - he stated it just might be a referred pain from the RSD.??? If it was in a couple places maybe - but my whole body?

Sounds to me too like you might have the RSD in another place, the muscle ache, the stiffening of (parts of) the limb.

Go see your doctor about this, please!

RSD can spread.

Your pain is better, IMMHO because it's under control with the meds you are taking, so going off of them will make things even worse. Do not do this yourself. If you intend to stop medication, go see your doctor!

I find your post very alarming!

[michelles]

i am so sorry you are having a hard time. i do know how you feel somedays i just think this is so unfair mainly because my kids are so young and i cant do for them what i used to. like others have said talk to your dr tell them you want off the lyrica, i went on for a month and gaind 12 pounds and felt that it wasnt working and had a hard time dealing with the weight gain so i went back on topamax that is what works for me but it does come with its side effects. have you thought about your ms causing your joint pain and stiffness? i do know that rsd will make you stiff and ache but maybe having the ms along with it is a part of it being so bad. many prayers are with you take care, michelle

[Jennelle]

Lyrica can give you muscle aches...if ever a question call your pharmacist for a fast reply....I do it all the time. You can also check out Med MD and you look under drugs and supplements and you can see side effects and what to watch out for! Hope you are feeling better...remember if you have been on Lyrica for a while don't just jump right off unless you talk to your dr. sometimes you can have bad effects from that. It is a good idea to go up gradual and down gradual...I had to stop taking Lyrica because I was running into walls I was so dizzy...
Jennelle

[AintSoBad]

Originally Posted by lindkaye

Hi there;
Need your expert opinions! I can't go on with this severe muscle ache and pain everywhere! In the am I can't bend my hands for a cup, can't lift my arms up because of pain in the shoulders, etc - all over. I am now thinking it might be one of the meds. When I was diagnosed - this aching pain was not part of the problem - have the RSD in my right knee/foot. Only after starting the meds it came on. When I questioned my PM dr - he stated it just might be a referred pain from the RSD.??? If it was in a couple places maybe - but my whole body? In reading up on Lyrica - I have a feeling it might be the problem. I take Lyrica, Oxycode, Methadone, Cymbalta, and Levothyroxine (for thryoid). Has anyone had this problem and it turned out to be Lyrica? I have not had the weight gain with the Lyrica as others have. How has other's weaned off of Lyrica? Right now I have been taking it 3 times a day - 50 mg ea. Do you think a couple of days lowering it by each pill - or should I make it longer? I just cannot go on with this ache any longer. My RSD pain has been better - and I am hoping it wont get worse coming off. Other delimma I have is I was diagnosed with MS and now have to start shots for that. Get this - side effects are up to 6 months flu like symptoms. Oh joy! I have to get my aching under some type of control before I start that treatment or I will be jumping off a cliff! Sorry to complain - its just I had planned on taking the whole family to church for Easter - and I couldn't even get out of bed. I'm tired of everything revolving around me not feeling well -its not fair to everyone else. I apologize for the complaints - thank you for listening and if you have any ideas or suggestions - please let me know. Happy Easter.

Lindkaye;

I cannot answer your questions, as you ask for an "expert", and I am only a fellow sufferer.
I've had RSD/TOS for 26 years, (Half my life), then a TBI and crushed discs for the past decade.

I can only advise you from my experience.

First, with your level of frustration, it doesn't seem that you have, or have communicated with your neuro. Your doctor.

I'll repeat the triangle of treatment for RSD.

Your Meds. / You and your doctor.

Your Attitude. / Your and your pain management psychiatrist. (who may only be needed for a year or two, then, to check in with occasionally).

Your Body / Your excercise routine. Walk. Get in a warm pool, and simply walk through the water. The resistance the water gives, will reward you! It will take time, and it will hurt at first, depending on how far you've let yourself fall.


But, back to #1.
Your doctor Your Neurologist.
Do you have a GREAT relationship with /him/her?
If not, make it so.
If you can't, find another, who REALLY KNOWS RSD!
(I"m repeating myself, but, lots of neuro's are docs who became docs, so as not to get "dirty".)
They can, be lazy.

So, be sure yours, is on YOUR side!! Test him/her if you must!
Do It!

Then, have your most intimate pain conversation with that doctor!
You'll know, when s/he gives you the time!

Stop, at NOTHING LESS!

I hope this helps.
I know it's not what you asked, but, it seems to me, that you have "jumped over" these steps.

Prayers for you,

Pete
ASB

[lindkaye]

Hi everyone. Thanks for your responses - its nice to know that people understand what I'm going thru. Well, I called my pain managment doc and explained what was going on and that I wanted to try going off the Lyrica to see if that was what is causing my extreme joint/muscle pain. He more or less said I could if I wanted to - just go off a little at a time - not all at once (which I already knew). I don't get a lot of response back from him which worries me. I don't have a neurologist for the RSD. Just my Pain Management dr, my Primary dr and my Neuorologist for MS. - she is excellent and I have had her as my dr for only 3 months. But - she does not know that much of RSD - her expertise is MS. She does not feel that the severe aching is the MS - although MS can give you some pain. My primary dr did find out that my thyroid was not working and that is the resulting of my sweating to no end - so new meds for that. But my pain management dr did not even try to figure that out - just said RSD could cause the sweating. I realize it could but wish he would of offered to run tests - if he did he would of found out about my thyroid instead of me having to go to my Primary.

So - what do I do?? I have liked my PM dr but he is so laid back - and not real informative back. I do have a chance for 2nd opionion over at the U of W - my primary dr stated she would give me a referral. They also have a pain management team that deals with MS as well as RSD. So - I hate thinking about trying another dr but think this might be my only route. My primary dr is a little confused as to the pain also. I am supposed to start my MS shots in about 3 months ( I was given a repreive - was supposed to start this month) - but they can give you flu like symptoms (aching, fever, etc) for up to 6 months! I cant imagine that on top of how I feel now - there is no way I could cope. Sorry to ramble - but I feel like you guys do understand the pain and frustration with this disease. Thanks again for your advice -