MS People Dealing with MS Pain Community Group

So many people have pain from their Multiple Sclerosis in so many ways. Some from spasms, some through neuropathy, optis neuritis eye pain, etc. This group lets you "talk" about your pain and offers assistance to others who experience all kinds of MS pain related issues. Through your participation, you are helping folks find a centralized place for all their questions and...

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jdmassey 07/08/2011

HI
MY NAME IS JUANITA AND I HAVE MS WITH SEVERE PAIN... I HAVE HAD MS SINCE 1982 AND WAS DX IN DEC 2009... I HAVE BEEN ON DAILY STRENGTH FOR A NUMBER OF MONTHS NOW JUST VIEWING EVERYONE AS THEY ALL SUPPORT EACH OTHER... I HAVE BEEN ON OTHER SITES AND I HAVE TO SAY THAT THIS IS THE BEST SITE I HAVE SEEN... I STARTED OUT WITH THE MS SITE MOSTLY... I VIEW IT DAILY... THE REASON I DO NOT SPEAK UP IS I AM REALLY BOHTERED WITH COGNITIVE ISSUES.

I AM NOW ON SEVERAL DRUGS AS PROBABLY A LOT OF YOU ARE.... I HAVE A QUESTION ON WHAT YOU USE. RIGHT NOW... MY DOCTORS,WHICH ARE MANY, THIS IS WHAT THEY HAVE ME ON NOW FENTANYL PATCH 25, NEURONTIN, VICODIN, BACLOFEN, EFFEXOR, XANAX , COPAXONE INJECTION DAILY..... I GET A LITTLE WORRIED ABOUT ALL THESE DRUGS I AM TAKING.... WITHOUT THEM I AM TOTALLY MISERABLE. THEY DO NOT STOP THE PAIN TOTALLY SO AT LEAST I FEEL ALIVE..... SORRY FOR ALL THE CAPS AND SPELLING... I PROMISE I AM NOT YELLING AT YOU...IT IS JUST EASIER FOR ME TO TYPE.

I HAVE A LOT OF BACK PAIN AND HAD SURGERY OF THE C6-C7 VERTBRAE AND THIS IS WHAT THEY TREATED ME FOR FOR ABOUT 10 YEARS UNTIL I STARTED HAVING OTHER SYSTOMS....I HAD OPTIC NEU BACK IN 1982 AND THEY LOOKED FOR MS BUT IT WAS INCONCLUSIVE. SINCE THAT TIME I HAVE HAD SEVERAL SYMTOMS BUT JUST WENT ON AS BEST I COULD.... I WAS ALWAYS TOLD IF THEY COULD NOT FING ANYTHING THAT I HAD THE FLU, ETC.

TX FOR LISTENING TO ME RATTLE ON... HOPE YOU ARE HAVING A GREAT EVENING AND FEELING GOOD.

JUANITA

lchoppel 07/09/2011

I too take a battery of meds for the pain, nothing working completely. I see a pain management specialist and it was the best thing I ever did to control the "symptoms" of MS. I can't worry about what all these drugs are doing to my body, as I could not function without them. Like you said, at least you feel alive...

jdmassey 07/09/2011

THANK YOU FOR YOUR REPLY.. IT REALLY HELPS ME TO KNOW THAT I AM NOT THE ONLY ONE THAT TAKES SO MANY MEDS TO KEEP THE PAIN UNDER CONTROL. I GO TO A PAIN MANAGEMENT SPECIALIST ALSO...

deleted_user 07/10/2011

I stopped all my pain meds--though my pain is BAD. Am now managing it with strict diet, a HUGE round of supplements a day (33 pills a day and counting), and of course all the tiny lifestyle changes... OH and Cannabis. Seriously. You're sick of side effects and stuff? cannabis. It works for nerve pain best when smoked (i know I know it sucks but its better than needles right??)
Try it! Its all I take now for MS...seems to be working! pain is down, flares are down, walking is easier (combination of supps, diet, and weed)
If you have any questions about CAMs (complementary alternative medicine) let me know! I have been researching for years--trying to help myself. Am now fully natural and loving it! :)

(was on avonex, vicodins, neurontin, baclofen, solumedrol, etc etc etc)

deleted_user 07/11/2011

Hi There
I too am in the same positon as you. I have sever pain, and was also placed on the durogesic patch. First is was 25mcg and then was increased to 50 as the 25 did not hold me for the 3 days like it was supposed too. However, the 50 was too much, and I felt a little stoned on it. So I took it off. I have my neurologist several times to refer me to the pain clinic becasue I really need it, I cant live like this! I am in AGONY!!! They wont refer me... I dont know why!!! I am on Gilenya, and I think that it has something to do with that and that they are feeding back our side effects to the drug company ( Im not sure but I think that is the problem) Either way, I am in pain, and nothing is being done about it. It is my local doc who prescribed me the oxycontin and then the patch. I preferred the patch over the oxycontin as the oxy makes me SO nauseated.
Im really interested in the marijuana, however it is not legal in Australia! That , if it was available, would defiantely be a avenue I would explore...

Hope this finds you well
Nite

jdmassey 07/11/2011

Humunculus - THANKS FOR YOUR REPLY- HERE IN GEORGIA THEY HAVE NOT APPROVED CANNABIS YET. WISH THEY WOULD. MAYBE I COULD GET OFF ALL OF MINE AND TRY WHAT YOU ARE DOING.MAYBE ONE DAY.

OH SOLUMEDROL SENT ME OFF TO NEVER NEVER LAND. I HAD A RELAPSE AND THEY GAVE ME THREE INJECTIONS OF A TOTAL OF 1000 AND I HAD A DRUG REACTION. IT LEAD TO SEVEN DAYS IN THE HOSPITAL.

THANKS AGAIN AND STAY WELL.

jdmassey 07/11/2011

MESHELL77 THANKS FOR REPLYING TO MY POST. I AM WITH
YOU. I HURT SO BAD AND THERE IS NOTHING REALLY THAT CAN STOP THE PAIN. I WISH THEY WOULD ALLOW MEDICAL MARIJUANA EVERYWHERE FOR CHRONIC PAIN. THE PATCH IS HELPING ME SOMEWHAT. I AM ON 25MCG . AT LEAST I DO NOT WAKE UP SCREAMING IN PAIN. I HAVE BEEN ON COPAXONE FOR OVER A YEAR NOW.. THE LAST MRI THERE WERE NO CHANGES IN LESIONS. HOW DOES THE GILENYA WORK FOR YOU? I AM GOING TO A PAIN CLINIC NOW AND THEY ARE BEING REALLY GOOD AT LISTENING TO ME. YOU NEED TO FIND A NEUR THAT WILL REFER YOU IF YOU CAN. UNTIL I WENT TO THE PAIN CLINIC I HAD NO RELIEF AT ALL.

I HOPE THIS FINDS YOU BETTER TODAY. YOU STAY WELL TOO

deleted_user 07/11/2011

I spoke to the MS Nurse this morning and demanded a referrel tot he pain team. I cannot live like this... It feels like my bones are frozen (it is winter here in Austrlalia) I am experiencing a real bone pain in both my legs (was only right before) I have been on Gilenya for 5 weeks now, and the pain seem to worsen since I started it. Whether it is the Gilenya or the MS causing the pain we dont know.
I found the patch the same, I woke up feeling ok which was the benefit of it. As I said the oxycontin makes me really nauseated, and although I havent had any today I am still nauseated. YUK!
Does your pain feel like bone pain, or is this what nerve pain feels like??? I have tht typical skin sensitivity and "stinging" in places... But this pain just feels so deep that I can only put it down to bones???

Might go and curl up in bed for a little while...
Take Care All

Michelle

jdmassey 07/14/2011

SORRY FOR NOT REPLYING BEFORE NOW. IHAVE BEEN IN BED ALL DAY. THE FATIGUE WAS AWUFUL. MY PAIN IS ALL OVER MY BODY. MY HANDS ACHE MY NECK ACHES MY LEGS HAVE STABBING AND SHOOTING PAINS MOST OF THE TIME THAT THEY ARE NOT NUMB AND TINGLING. MY FEET SOMETIMES GET NUMB. SOMETIMES MY FACE FEELS LIKE I HAVE PAIN THAT ORGINATES FROM MY NECK ON THE LEFT SIDE OF THE HEAD TO MY FACE MY TEETH AND GUMS EVEN HURT. THE FACE PAIN IS LIKE A SHARP BURNING PAIN MY RIGHT THIGH FEELS AS THOUGH IT HAS BEEN BURNED AND SENSITIVE TO TOUCH. I HAVE ALWAYS HAD THE BACK PAIN FROM THE BEGINNING.. NOW THE SPACICITY IS HARD TO DEAL WITH. I COULD GO ON BUT I AM SURE YOU KNOW HOW ALL THIS FEELS. THE ONE THAT IS TAKING A TOLL ON ME RIGHT NOW IS THE COGNITVE ISSUES.

I HOPE YOU ARE FEELING BETTER AND YOU HAVE HAD A GOOD DAY. PLEASE FORGIVE ALL THE SPELLING ERRORS. NOT SO GOOD AT THAT ANYMORE

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