I DON'T REMEMBER IF WE HAVE DISCUSSED THIS TOPIC OR NOT . JUST OUT OF CURIOUSITY , HOW MANY HERE HAVE PAIN WITH YOUR MS OR THE ONES NOT DIAGNOSED?
MANY NEURO'S DISMISS PAIN WITH MS , EVEN THE ONES UNDIAGNOSED.
WE ALL KNOW THAT MS CAUSES NEUROPATHIC PAIN,PAIN IN THE LOW BACK,OPTICAL NEURITIS CAUSES PAIN WHEN MOVING THE EYES AND SO FORTH.
I'M FORTUNATE THAT MY NEURO BELEIVES IN PAIN WITH MS,BUT I ALSO HAVE AA (ADHESIVE ARACHNOIDITIS)
MY NEURO HAD ME ON OXYCODONE 10/325 I THINK AND HAS CHANGED IT TO METHADONE.WHICH I DON'T KNOW HOW I FEEL ABOUT IT.MY WHOLE SYSTEM IS WONKY RIGHT NOW.DON'T KNOW IF ITS THE PAIN MED OR THE SINUS INFECTION.
HOPING OTHERS WILL SHARE THEIR STORIES OF PAIN AND HOW YOUR DRS.TREAT IT.I THINK IT WILL HELP MANY HERE.
I'm undiagnosed, and I have pain. My pain, thankfully isn't horrific, but it's there.
I have neuropathic pain, in the form of electric shock sensations in all limbs, and through my right eye, and I have pin poke type pain. I also have some days, a deep deep aching pain in my legs (although this one's hard to describe), and I also have a pain on the top of my head, that's like someone bashed me on the head while I was sleeping. It comes for a few days, then goes for a couple months.
That's all I can think of, in terms of pain, for me.
WHAT I'M WONDERING IS WHETHER THERE'S ANYONE HERE 'without' PAIN. WITH EVERY FLARE I HAVE HAD SIGNIFICANT PAINFUL PARASTHESIAS, LONG TERM. AT THIS POINT I'M DEALING WITH SEVERE BURNING PAIN (A LITERAL PAIN IN THE BUTT). I HAVE ALSO HAD A LOT OF MUSCULAR PAIN THAT I CAN'T PIN DOWN AS TO SOURCE, BUT THAT MAY BE NEUROPATHIC.
I'VE HELD OFF ASKING FOR MEDS AND WILL CONTINUE TO DO SO FOR AS LONG AS POSSIBLE. OF COURSE I DON'T KNOW HOW LONG 'POSSIBLE' WILL TURN OUT TO BE. BUT I'M AFRAID OF SIDE EFFECTS, WHICH I ALWAYS SEEM TO GET TO THE MAX. AS TO STEROIDS, I ALREADY HAVE OSTEOPENIA (THE FORERUNNER TO OSTEOPOROSIS) AND DON'T NEED TO LOSE ANY CALCIUM. HIGH DOSES OF OVER -THE -COUNTER MEDS SUCH AS ADVIL DO TAKE THE EDGE OFF THE PAIN, BUT I DON'T TAKE THEM REGULARLY BECAUSE THEY CAN BE TOUGH ON THE ORGANS.
SOONER OR LATER I'LL HAVE TO DEAL WITH THESE THINGS BUT FOR NOW I'M AVOIDING THE WHOLE ISSUE.
PAIN IS UNTREATED, IT COMES AND GOES, AND VARIES FROM SPASMS, TO JERKY NERVES, AND ACHEY (achy) JOINTS OR JUST PAIN ASSOCIATED WITH PULLING THE LEGS ALONG WHEN THEY ARE FATIGUED, AND YOU CAN INCLUDE ARMS TO THAT TOO.
GOOD QUES, WE SHOULD COUNT THEM UP IN THEN END. . . DX'D AND UN DX'D
I am diagnosed and have pain but am told it's not due to MS. I have lightening bolts going through my feet daily, I have pain in my legs daily, I have pain in my head daily but that is due to the paratrigeminal neuralgia which I have been told is not related to MS period. I am currently on Oxycodone and I hate it and I am going to try to leave a message with the stupid receptionists at my stupid doctors office and she might call me back if she can figure out how to use a telephone...odds are against it...
THANKS FOR YOUR COMMENTS, YES, ESS, I AM ALSO CURIOUS AS TO WHO DOESN'T HAVE PAIN.
I WAITED OUT THE PAIN, NARCOTIC PAIN MEDS WERE MY LAST RESORT, I DIDN'T TAKE ANY PAIN MEDS OTHER THAN OVER THE COUNTER MEDS UNTIL DECEMBER.I WAS THEN PUT ON OXYCODONE,IT WORK AT FIRST,BUT MY LAST ATTACK WHIPPED ME,SO I HAD TO SWALLOW MY PRIDE AND ASK MY NEURO FOR SOMETHING DIFFERENT, SO I COULD FUNCTION.
ELAINE,I HAVE BEEN ON ZANAFLEX ,BACLOFEN AND NEURONTIN,I STILL TAKE THEM FOR THE MUSCLE SPASMS AND THE NEUROPATHIC PAIN.
CHRISTINE, I'M REALLY GLAD THAT YOUR PAIN LEAVES AND GIVES YOU A BREAK,I HOPE YOU ARE KEEPING A JOURNAL.
SL, HOPEFULLY IF YOUR SPASMS CONTINUE,YOU'LL TALK WITH YOUR NEURO,THEY DO HAVE MILD MEDS THAT HELP.
DIDN'T MEAN TO LEAVE YOU OUT,YOU MUST HAVE BEEN POSTING WHILE I WAS TYPING MINE.
I AM SO SORRY TO HEAR OF ALL YOUR PAIN,I CAN UNDERSTAND YOUR FEELINGS TOWARD THE OXYCODONE,IT WORKED WELL FOR ME AT FIRST,I HATE THE METHADONE,I DON'T THINK I'M HAVING ANY SIDE EFFECTS FROM IT,BUT ITS REALLY NOT HELPING MY PAIN,BUT IT HAS TO BUILD UP INTO YOUR SYSTEM.
PLUS I HAVE A HEADACHE AND RUNNING A 103 TEMP. , SO THIS IS NOT HELPING.
I'M SAD THAT YOUR DRS ARE SO DISMISSIVE,WHAT AN IDIOT,MAYBE THE RECEPTIOIST NEEDS A VISUAL COLOR CHART OF A PHONE TO FIND IT.
I AM UNDX AND PAIN IS MY DAILY COMPANION. WHILE DOING ALL THIS PACKING AND MOVING IT HAS GOTTEN EXTREMELY BAD.
ELAINE, LIKE CRAIG, THE SOLES OF MY FEET FEEL LIKE I AM WALKING ON HOT COALS, THE PAIN IS SO BAD. LAST THURSDAY WHILE MOVING BOXES I ACTUALLY HURT SO BAD I JUST SAT DOWN AND HAD MYSELF A GOOD PITY CRY. DIDN'T HELP THE PAIN....JUST STOPPED UP MY NOSE....HA..HA...
OF COURSE MY PAIN IS ALWAYS WORSE IF I GET TOO HOT OR TOO TIRED. SOMETIMES IT IS FROM THE SPASMS, BUT MANY TIMES IT IS JUST THAT HORRIBLE UNRELENTING PAIN.
FEET, LEGS, BACK, ARMS, NECK..... I GUESS I SHOULD JUST SAY "EVERYWHERE"......
WISHING ALL OF YOU A LOWER PAIN LEVEL, AT LEAST FOR TODAY.
My pain has been mainly in both my forearms - paresthesia or dysthesia, I'm not really sure what it's called. It is a burning, hyper-sensitive sensation on the skin. It started 6 months ago with my first major flare. I started Neurontin recently and for a few days the pain in both arms really diminished, then it returned in my left arm and spread to my left hand, and then I developed overall left side numbness from my shoulder to my foot. I would describe my arm and hand as painful and the rest of my left side as numb. I am trying not to use my left hand as most things I touch feel like razor blades. Even the elastic band on my underwear feels sharp! I currently have a compression bandage wrapped around my arm which relieves the burning/hypersensitivity. I see my GP on Friday and will ask about increasing the Neurontin. HATE the idea of all these meds but not sure what else to do.
In one of my neuro reports, my Lhermitte's Sign was described as 'neuropathic pain.' That suprised me a bit, because I didn't describe it to the doc as painful, because it wasn't. Just a zapping, shock-like sensation. I know some people here have it quite bad and would describe it as painful; fortunately that wasn't the case for me. Just kind of surprised me that the doc described it in this way. The pain I am having in my arm and hand at the moment is far worse.
I THINK ESS HAS THE RIGHT IDEA ASKING WHO "DOESN'T HAVE PAIN!"
I, TOO, HAVE THE TINGLING, BURNING PARASTHESIA PAIN. BUT I ALSO HAVE CRAMPY MUSCLE PAIN EVERY SINGLE STINKING DAY, MOSTLY IN THE BACKS OF MY LEGS. MY HAMSTRINGS AND CALVES. IF I'VE BEEN REALLY ACTIVE, MY MUSCLES SORT OF VIBRATE WITH PAIN WHILE I TRY TO FALL ASLEEP. TRY AND TRY...
AND, LIKE ESS, I HAVE THE PAIN UP INTO MY BUTT!! AREN'T WE CHEEKY!
I unfortunately have daily, chronic, sometimes unbearable pain that I have had non-stop for years. I FORTUNATELY have doctor's that listen to my cries for help and are doing everything in their power to try and help me. Despite medication, I have not known a day without pain for a very long time.
I pray for a cure and a reversal of the damage from MS.
No need to get your crying towels out for this lady though, I manage my life through my faith, my friends and good doctor's that really do care.
I AGREE NEURO'S DO NEED HUNG,BUT YOU DO HEAR OF NEURO'S STATING THAT MS DOESN'T CAUSE PLAIN.
HEATHER YOU ARE BLESSED TO HAVE A GREAT NEURO.MY NEURO IS AWESOME IN CONTROLLING MY PAIN.HE WENT FROM OXYCODONE TO METHADONE BECAUSE MY PAIN LEVEL WAS OUT OF CONTROL.
MY NEURO IS SENDING ME TO A PAIN CLINIC TO SEE IF THEY HAVE SOME BETTER OPTIONS.BUT I'M NOT ONLY DEALING WITH MS BUT ADHESIVE ARACHNOIDITIS- AN INCURABLE NERVE DISEASE IN THE LUMBAR.VERY PAINFUL.
JUST LIKE YOU I PRAY EVERY DAY FOR A CURE FOR BOTH,I FEEL MY FAITH HAS KEPT ME GOING THROUGH ALL THIS.MY FAMILY AND FRIENDS HAVE BEEN SO SUPPORTIVE.I HAVE BEEN BLESSED WITH A SUPPORTIVE NEUROLOGIST AND NEUROSURGEON.
HEY THERE T, AS ALWAYS OF LATE I'M LATE COMING IN HERE.HAHA YES I DO HAVE PAIN AS WELL FROM LEG AND BUTT SPASMS AS WELL AS THAT FUN HUG I JUST RECENTLY HAD. I ALSO PERIODICALLY GET THE PIN AND NEEDLE PAIN AND I GET SOME PAIN THAT I JUST CAN'T DESCRIBE BUT SEEMS TO BE THERE JUST FOR THE FUN OF IT.
I HAVE PERCOCET THAT MY FAMILY DOC HAD GIVEN ME BUT THE BONEHEAD NEUROS SAY THEY DON'T WANT TO GIVE ME ANYTHING UNTIL THEY KNOW WHAT IS WRONG WITH ME.
MY THOUGHTS (AND THE LITTLE GREEN MEN'S THOUGHTS LOL) ARE ALWAYS WITH YOU.
Not dx but have severe pain in legs, mostly quads and a lot of lower back pain. I also have severe reactive arthrtitis. My new neuro says my symptoms are a huge puzzle which he is determined to put together and is running every test there is for MS, he was very annoyed that the last neuro didn't order a new MRI ( last one was 06) or any other tests. If anyone remembers me she is the one that told me to breath in and out and all my symptoms would go away! He told me it's a good thing I don't have numbness in my skull because......... that would make me a "numbskull"! His attempt at humor and to put me at ease, it worked! Anyway I have pain now that I never had with the arthritis so down the road I go with the rest of you.
Well, add me to the mix. For me pain was never a big part of my MS until the Trigeminal Neuralgia. It felt like the lower half of my face was rotting away. But, I do have pain in my right lower back when the spasticity gets out of control. It is so clearly muscle spasm. I still have to sleep with my hips bent at 90 degrees and do stretches every day to keep that under control.
Now, I have a question for the rest of you about "muscle pain" that doesn't seem to be spasm related. Last fall when I was doing all the knitting I got pain in my right forearm that felt like tendonitis. I even know and can trace the offending tendon. But, after a few months of rest, it is no better and now is not only along the top of my forearm, but also includes pain in the muscles along the underside of the forearm and in the biceps of the same arm. When I try to lift something with that arm, the entire girth of the forearm hurts horribly along with the biceps. It hurts to massage it and to contract any of the muscles.
Does anyone think this could still be overuse from 3 months ago, so diffusely throughout the arm? Or does anyone have just one area of very tender muscles? I can't use an antiinflammatory of any kind (tylenol, alleve) because I am truly allergic to the whole class.
Finally, the comment by any neurologist that pain is not a part of MS seems so bizarre as to be psychotic. It is going in the Health Page that will be called "Lies My Neurologist Told Me." (not MY neuro, you all understand)
pain & pain & pain!!! Well I belive this intence neck, back of head, shoulder, stiffness,
PAIN!!!! chronic. and ear pain!!! I have had sence 1991. Also off and on trigeminal neuraigia pain, is when this all started...... so many DR.s. And I no now, wrong answers!!! findly some how after taking mortion 800 mg.
Just about around the clock and hardly no relif..... a few years ago a DR. gave me nortripline!!!! OOOOO MYYYY GOODNESS the pain went away!!! only taking 25mg. one a day. but not the TN pain... that pain was happening every spring for about 3 years,
I was runing to the denist thinking i had a bad TOOTH!!! the throbbing, shooting, unbearable pain! the DR. gave me the percett the strong pain meds FOR the pain . and then a few months ago this PAIN started very unbearable pain from a hot shower!!!
The P AIN was a blistering, stinging , pain felt like my skin was peeling right off my skin!! like a very bad sun burn, I now take neurontin and it makes my PAIN bearable, I hope all you can find some help with your pain .
You asked, and I've just GOT to take a poke at it. Can your arm probs be from overuse from 3 months ago? I say yes. You rested it, but surely you overcompensated for it during that time. The initial tendon in the forearm didn't get any better, and you got the add on muscles/tendons around it screaming too. You knitter you. . .
Maybe by using it differently because it was hurt, the others got involved and joined in on the party. Not able to say anything you don't already know. Just having fun trying to help, and hoping some chime in with some medical advice you've taught us through the years. Anyone else want to take a crack at it - any thoughts? Who is going to pull off the "A" today, what I've given may only pull off a low "C."
Also, I would ice it, and try to isolate it. Include that elbow, you know how long they take to heal, and how the pain radiates from them up and down the arm. Yikes!
Have a good one,
hope it starts to subside soon,
Just in case you are surveying how many have pain, fibro, ms, or undiagnosed: I am diagnosed as fibromyalgia, but everyone, except the doctors, think there is something not diagnosed causing this. I have talked to people with ms, lupus, fibro, rhematoid arthritis and most are concerned that I am not completely diagnosed. I have had pain in most of the body at some point. It all started 10/07.
Well, maybe I'll be the odd one out. My off-the-cuff answer would be that I don't have pain. Or not very much. I do have a lot of numbness, abnormal sensations, and what I think of as "unpleasant sensations," but not what I would call pain. For which I am very grateful.
But I do want to say that I have so much respect for all the people on this forum who manage to go on through all sorts of terrible pain and suffering. There was one evening last week where I was tired and out of sorts and then I just dropped the salad dressing container for no reason and it splattered all over the kitchen floor (not a pretty sight) and I felt like crying. And I thought of all the people on here who feel like that or worse all the time and I don't know how you do it. Not without going crazy or taking it out on everyone around you.
I read recently an article about some kind of machine that can look at people's brainwaves and somehow tell what picture the person is looking at.
If these machines get better, maybe they'll reach a point where they can read patients' brainwaves and then replicate that pattern in the neuros' brains so they will finally be able to understand the subjective experience of MS.
Oh boy, don't get me started on these neuro's who don't believe that pain is related to MS. I would love to have them live in my body for about 5 min. and I'm pretty sure they would change their minds.
I live with chronic pain every single day of my life. There are days that it's tolerable and then there are days that I'm not getting out of bed no matter what you say. (well, maybe a house fire could get me up) haha
My feet feel like they are in a bucket of ice cubes all the time. You know that cold feeling when it's no longer cold but aches horribly? My lower back constantly hurts. At it's worst, it feels like a knife twisting around. Oh yea, the knife has been heated to at least 1000* degrees, because it burns like h#%L. My shoulder and neck areas also have this same burning feeling and my neck always feels like it has a crick in it. The electric shocks that shoot through my whole body, the jerks I have just when I picked up my morning coffee, the stomach pain from lack of bowel movements, (I had this before medication), and all the other stuff that I'm not feeling right this minute but will eventually.
So, all you neuro's out there who might be peaking in on us, please don't tell me that there is no pain with MS.
By the way, because I'm computer illiterate, I don't know how to copy and paste and all that junk, but I read an article where specialist in MS are doing studies that associate MS and CRPS. (complex regional pain syndrome) I'll give you the address, it's incredibly long, and hope that you can see it for yourself. It's really interesting and I also think that the link between the two is for real. Most of us are probably proof of it. Anyway, here it is:
Now that you mention it I think we did. I've slept since then, briefly, but I have slept. My brain doesn't seem to remeber things any more but at least it's the one part of me that doesn't hurt. hahaheehee
If you get a chance to read the article I would love for you to let me know your opinion on it. So far they have only done small studies but if I remeber correctly (haha) it's something like 1 out of every 205 MS sufferers will have CRPS. That's a lot of people!
I'll be praying,
p.s. The reason I need your opinion is because right now your the only doctor that I trust.
I'm not DX. I have anything from weird burning sensations deep in the muscle, to painful muscle spasms. I have more trouble with the spasms than anything else. I'll get muscle spasms so bad that it will contort my ankle inward. Sometimes I'll get a nice sharp stab in the side of my face too.
I'm on Balcofen for the spasms which works sometimes and sometimes not. I have a prescription for Lyrica but I only use it if nothing else is working. It knocks me out.
Quix- I'll take a stab at it, but don't laugh. I'd say yes, you could be having pain from knitting 3 months ago. Did you over do it? Maybe. Your tendon is probably irritated along with the muscles and nerves. Try cold compress like SL suggested. Have you ever tried Lidoderm patches? I use them if I'm having trouble sometimes. You could cut them in half and apply one to your bicep and one half to the forearm. Just a thought.
I'm going to my neuro tomorrow to get results of LP. The pain question Oh my god everyday I have pain. Neck shoulder hands feet all over. I have c-spine disk problems. I take muscle relaxer, vicadin, anti inflammatory almost daily at bed time or if really bad during the day. I went to pain mamagement today and going to get facet injections tomorrow also. I'm glad this question was asked I wasn't sure either. Good luck to all
HAVE YOU TRIED ZANAFLEX,MY RIGHT LEG SOUNDS LIKE YOUR ARM,MY DR .PUT ME ON THE COMBINATION OF BACLOFEN AND ZANAFLEX,AND THAT HAS HELPED A GREAT DEAL. ---- JUST A THOUGHT.
YOUR ON METHADONE, MAY I ASK WHAT DOSAGE AND WHEN YOU FIRST STARTED IT DID YOU HAVE ANY ADVERSE EFFECTS FROM IT.
I STARTED METHADONE ON FRIDAY AND COME SUNDAY , I HAD A FEVER OF A 101, COME MONDAY NIGHT IT WAS A 104.7, SO MY EX-HUSBAND TOOK ME TO THE LOCAL EMERGENCY ROOM , THEY GAVE ME 2 BAGS OF FLUID THEY THOUGHT I WAS DEHYDRATED,
MY PULSE RATE WAS 158, JUST A LITTLE HIGH,THAT DIDN'T BRING THE FEVER DOWN, THEY GAVE ME 2000 MGS OF TYLENOL,THAT LOWERED MY FEVER TO 100, BUT MY PULSE WAS STILL 158, THEY ASK IF I WAS IN PAIN,I TOLD THEM I HAD EXTREME PAIN AND EXPLAINED MY DR. HAD SWITCHED ME FROM OXYCODENE TO METHADONE ( AN EXTREME CHANGE ) .
TO MY UNDERSTANDING IT TAKES ABOUT 5 DAYS FOR METHADONE TO BUILD UP IN YOUR SYSTEM.ONCE THEY GAVE ME A SHOT OF MORPHINE,NOT ONLY DID IT KNOCK ME OUT, IN ABOUT A HALF HOUR IT LOWERED MY PULSE RATE TO 122,IN AN HOUR IT WAS 98.
THE EMERGENCY ROOM DR.( WHOM WAS VERY SWEET) TREATED ME WITH RESPECT AND DECENCY,HE DIDN'T TREAT ME AS A DRUG SEEKER,WHICH MOST ER DRS DO TREAT PATEINTS THAT WAY.I THINK IT WAS GOOD THAT MY EX-HUSBAND DONE THE TALKING FOR ME.HE DID ASK IF I HAD HYPERTENTION,I TOLD HIM NEVER.HE THINKS MY FEVER AND PAIN LEVEL IS WHAT RAISED MY PULSE RATE.
ON THE DISCHARGE PAPERS HE PUT DOWN VIRAL INFECTION, I DON'T THINK THINK SO , I REALLY THINK MANY OF MY SYMPTOMS EXCEPT THE HEADACHE MATCH THE SIDE EFFECTS OF THE METHADONE.I WENT OFF OF IT AND WILL FIND OUT IF ITS A SIDE EFFECT OR A VIRAL INFECTION,I'M STILL RUNNING A FEVER,ITS BEEN 5 DAYS NOW WITH IT.
ITS BEEN 24 HOURS SINCE I LAST TOOK THE METHADONE AND WILL CONTACT MY NEURO WHEN HIS OFFICE OPENS.I SLEEP ALMOST 20 HOURS A DAY.
SWEETIE , I CAN RELATE TO YOUR PAIN,IT WOULD BE NICE TO HAVE MAYBE 8 HOURS WITH NO PAIN.
I'M PRAYING THAT NEURO'S ARE LOOKING AT THIS FORUM,THIS WOULD GIVE THEM INSIGHT ON WHAT WE GO THROUGH EACH DAY.THE MSers,THE FIBRO DXers,AND THE UNDXed.I KNOW THESE NEURO'S WOULDN'T LAST 5 MINUTES IN THIS BODY.
I'M IN SO MUCH PAIN RIGHT NOW,EVEN MY SKIN HURTS.
I'M SCHEDULED TO SEE A DR. AT THE LOCAL PAIN CLINIC ON APRIL 22ND.I HAVE MY RESERVATIONS,I FEEL MY NEURO IS DOING A GOOD JOB,BUT MY NEURO SURGEON THINKS A SPINAL CORD STIMULATOR WOULD BE THE BEST ROUTE TO GO.I THINK THAT THE PM DR. SHOULD TRY A TENS UNIT BEFORE SURGICALLY IMPLANTING SOMETHING.
OKAY I'VE RAMBLED ON ENOUGH,
PRAYING THEY FIND A CURE SOON, OR AT LEAST A MED THAT HELPS ALL OF US.PRAYING THAT ALL YOUR DRS. LISTEN AND PROVIDE ALL OF US WITH THE PROPER PAIN MED TREATMENT.
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