5 wks on gilenya - neck/back pain anyone?

[bri]

I can't seem to shake the tightness and cramping in my neck and back. What is also chronic is dull cramping pain in my upper left arm. Sometimes it radiates to the forearm too. I'm 44 and I've never had this pain in my back or arm before (neck pain I have from time to time). Is anyone else having back pain symptoms or upper arm cramping? I mean, it's been 5 weeks with this pain. Wish it would go away.

[Moosette]

I have not had the arm cramping but I did get some lower back pain for about 2 months on and off after I started Gilenya. One day it just kinda stopped, have been on G for almost a year now and haven't noticed it in a looong time. I know they say back pain can be a side effect of being on Gilenya but not sure about the cramping...I would maybe call the Dr. just to be on the safe side if it is still bothering you, good luck!

[bri]

Thank you for your reply! It's still happening. I haven't been to the Dr. yet, but going on vacation this week. Plan to get a lot of rest and plenty of massages.

[TPB]

neck pain

Are you still experiencing the neck tightness and pain? My wife has experienced severe neck and upper arm pain for approximately 3 years. This started shortly after going on Copaxone and since stopped that and currently on Gilenya and still having the same pain. Dr's can't figure it out and concerned about not being on anything but would like to know if the pain is a side affect of the MS drugs. Any input would be helpful.

[Dantara]

Neck pain

Have you tried considered Acupuncture? I have had 5 treatments and the results are amazing... I am on GILENYA only a week now but I do feel more back pain since, I am just on my 7 th pill though. After just a few days I feel stronger with GILENYA but again it's so new I really can't say...
Look into acupuncture though it may help... I was a skeptic but my wife won a free session in a raffle so I figured I'd try, now I look forward to the drug free relief!

[catmama]

Encapsulated Shoulder

I too have had problems with my neck, shoulder and right arm. I can't really relate it to Gilenya, I started it in February of this year, and my upper body pain started in November of 2011.

I started physical therapy for a encapsulated (frozen) shoulder back in January, underwent steroid injections under fluoroscopy to my shoulder and eventually my neck. The shoulder injection really did help with the inflammation and pain, but then being the stubborn chick that I am, I decided to move some heavy objects and lift overhead, causing all of the problems to return.
So I have been undergoing PT since January and now my ortho thinks I have developed a rotator cuff tear on my my shoulder. YAY.

I realize I've gotten off track, but maybe the pain you're experiencing is unrelated to the Gilenya. Remember just because we have MS, we can still have other issues! I just hate it when someone says, "Could it be your MS?" I know they mean well, but come on, not everything is because of MS!

I think your troubles warrant a trip to your GP or an ortho for evaluation.

Good Luck!

[bri]

no more arm/back/neck pain

hello all,
appreciate all the feedback. i do a lot of spine relaxing pilates stretches and realized i had become quite lax in doing them around jan/feb. i started up again late march when the upper arm became a lot of tingling all the way to my fingertips. because i had not had any fall/injury that could have caused it, i really did believe it was ms.

i have had ms for 14 years and was on copaxone for the last 7 years which worked well (no major episodes) but i was tired of the daily ritual of pain and everlasting scars. i now do those stretches again every morning and it has helped tremendously. i don't know about all of you but since the ms, my muscles are very sensitive. it isn't easy to explain but, for example, i can only go for very gentle massages and can't take too much pressure on the muscles. but massages have helped my arm.

i tried accupuncture before on my back but i think it's true that you really have to believe in the practitioner. mine was a chiropractor and still, it was not a good experience. because i have ms, he wouldn't do much else for my back.
i also have not had any episodes since gilenya so that is good news.

now i fight another symptom which is excessive drowsiness a couple of hours after taking it and it lasts about 1-2 hours. i can live with it. if i didn't take my vitamins before bedtime i would take it then; however, i prefer not taking the gilenya with anything else.

i wish the best of health to all and hopefully, we can all be symptom free some day.


** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[MsMarla]

Pain?

I have moderate back pain but attribute it to years of um... Living. However, this week, I learned where my sciatic nerve is!!! OMG, talk about wrenching... Could it be another side effect?