Good morning,

I haven't posted in NeuroTalk in 7 years. I have Thoracic Outlet Syndrome and spent years in pain. I'm better. This is not about me but my sister. She has had MS for approximately 25 years. She also has bulging and herniated discs in her lower spine.

She is in constant pain and cries all the time. She is so unhappy and our family feels helpless. She has been told due to the MS, they cannot operate on discs. I don't want to say I don't believe this but, really? Is this true? Has anyone else experienced something like this? We want to get her to the right hospital/surgeon because her quality of life is horrible. She cannot participate in any family functions (even though we make sure she can access easily)

Any help would be greatly appreciated. I love her dearly and it kills me to see her in so much pain and feeling no hope.

Thank you

Do you have a MRI report or know the details about her back/disks, what levels of the spine, how many are affected..
The report should have the specifics. The terminology in the report can be helpful..it may also indicate lesions & MS related information..
If lesions are in the same area of the disk issues, maybe that is the specific reasoning..

Our Spinal forum might be the place to post/read about about specific spine issues, sometimes surgery does not stop the pain unless nerves are being directly affected..is there severe stenosis or DDD also?
How severe is her MS if the spine/disks were not involved?

I also thought of SCS, for pain relief if meds are not working, or in addition to meds..
Has she had any PT sessions to see if that might help?

Members can share more, but I found this-
[There are two main types of pain in multiple sclerosis: nerve pain (neuropathic pain) which is caused by damage to the nerves in the brain and spinal cord. This includes altered sensations such as pins and needles, numbness, crawling or burning feelings.]

[About two thirds of people with MS report pain as symptom of their disease. The most common types of pain experience by people with MS are headache, back pain, extremity pain, and muscle spasms. Because the pain comes from the nerves, common pain medicines like aspirin have little or no effect; however, other medications may be effective.] 2 Early MS Symptoms (Pain), Warning Signs, Treatment & Diagnosis

Thank you! She is going to her neorologist next week and asking for new MRI's. I'm not sure how long it has been since she had them done. She has been difficult to help because she always says that she has been told it can't be done and there is no discussion.

Just a suggestion for the MRI. Make sure they do it "with contrast". That means they inject the vein with some dye that will highlight the areas of concern in her back and if there are any problems there.

I hope they can find the culprit of her pain and offer her some solutions that will help her to enjoy life again. Pain is exhausting and can make you feel so helpless.

Hello, very sorry to hear about your sister and unfortunately I know her pain all too well. I have MS and muscle spasms from that actually broke the a vertebra in my lower back and caused a both bulging and herniated disk, since then spasms have also caused additional bulging disks in my thoracic spine level and my neck. And like your sister surgery wasn’t/isn’t a corrective action any doctor will take with me. I “lived” with pain killers for almost 10 years the entire time I was often driven to thoughts of suicide from the pain alone at least twice a week and over the years even made a few attempts. I did physical therapy which I won’t say it didn’t help, because it sort of did at least until the muscles built up enough to begin tearing apart my body again at which point I was dismissed from PT.

Eventually through numerous medications, 8 different pills taken at all different times of the day, my pain was finally under control enough for me to function “some” and my suicidal thoughts became far less frequent though I still suffered from a huge amount of bad days. The end of last year beginning of this year I got a baclofen pump put in, suffered quite a bit and questioned my sanity in opting for it for the next couple of months but I have to say it’s been the best decision of my life so far. I can move, my bad days are far and few between and I’m no longer waiting for my husband to leave for work so I can break down and sob.

Whether or not that will be a possibility for your sister is difficult to say, but it truly isn’t that unusual from my experience for doctors to not want to mess with the disks too much when one has MS especially over pain. My case was a risk/reward that had doctors fleeing from the thought of surgery despite a broken back and smooshed disk. I could still walk with assistance and there was a risk as always that they could remove my ability to walk, and since it was caused by spasms there was an increased chance of causing greater harm to my back and mobility by compromising the area from surgery.

Now I’m not sure exactly what caused the bulging and herniated disks in your sister’s case or exactly where they are located (mine is L3 L4 T2 and C1) but first and foremost posture is a good starting point, don’t curl up from the pain it will make it worse, throughout the day and before bed make sure you lie flat on your back with your knees raised or get a zero gravity chair, it is no lie to say that my own zero gravity chair sometimes kept me from crossing the line and saying goodbye to the pain permanently.

The more stress you can allievate from your back the better you will feel at least while it’s being relieved. And get in touch with a pain management doctor! A reputable one, someone who will listen and try to arrange a medication schedule that will at least provide some assistance with the pain. A good pain management doctor will generally start off a bit slow on the meds, and you might find yourself changing them all around many times over till you find a combo you’re satisfied with, and they also might recommend going for a pain pump like mine, but first they’ll work with oral medications, possibly some injections, and can even recommend PT and things like TENS units (love mine still).

I’ll keep your sister in my thoughts and prayers and please let her know she’s not alone in her pain. But truly pain management is where she really needs to be right now to at least gain a little bit of comfort. It’ll still be a long journey, realistically, I wish there was a magic bullet but there simply isn’t. Though with the MS diagnosis already I would definitely make sure the pain management doctor skips the narcotics and goes for gabapentin it seems to work the best for us.

Yes, I agree. The only problem is she is in so much pain she can barely move. We have suggested taking her to ER because it gets so bad she can barely get up to go to the bathroom. She has fallen numerous times and cannot get up by herself. I live about 7 minutes away and my son who is 26 has gone over in the middle of the night for her. Sometimes it is so difficult the have to call EMS because he cannot get her off of the floor.

Thank you so much! We believe the disc issue was from a car accident. Unfortunately, she is extremely overweight which puts so much strain on her body. No talking to her about that. We've tried. We are starting to look for doctors in Philly, New York or Boston. I had the same neurologist she has and as much as he's very nice, I feel like NOTHING positive has been done for her. I'm glad you have gotten some relief.

Thanks again,

Linda

Sounds like you’re in the New England area, which is a great place for medical treatments. And since it was from a car accident, most likely, you might see about an inpatient pain management program. The way many of them work is they’ll take images and do an initial review of all your concerns and then begin a full treatment of medication regulation, physical therapy, counseling, assistive aids if needed and even a home check to suggest aids for around the house to make living as comfortable as possible. They also offer family counseling so everyone knows how to deal with what’s going on, like when to coddle and when to scold. It’s not a nursing home, though you do stay at the facility for the length of the program, so they can monitor how you react to the medications, get them scheduled properly, see how you manage with the PT and nutrition (which is another part of it). They see your sleep patterns, your appetite, activity levels all of which helps them to see what it is you personally require throughout the good and bad days.

Normally it is done for stroke patients or patients that have been in critical accidents before they are discharged from the hospital, but perhaps your nuerologist can see about getting her in, even if he might have to wait for her to fall again for EMS to pick her up and bring her to the hospital, which could be the case especially for insurance purposes. I don’t know how your sister will feel about it, it does sound like currently she is in a defeatist mindset unfortunately. And though counseling was recommended for me many times, I always rejected it on the premise that talking about my pain wasn’t going to stop my pain, so I don’t even know if something like that might help her or just make her more resistent to assistance.

Though it does sound like she is in desperate need of a reason to try to change her current situation. Does she have any current hobbies? Any kind of interest in handicrafts of some sort? Pets maybe? Even a simple goldfish bowl gives her a reason to fight through the pain some to give it a few shakes of flakes a day. Jigsaw puzzles, balsa wood villages to paint, crocheting hats for preemies at the local hospital, baking dog treats for the animal shelter, even volunteering at the shelter to sit in with the kittens and pet them, no lifting, no standing for long periods, just holding a kitty in your lap for a bit a of time each week.

Really anything to give a sense of accomplishment, something that might be a little bit tiring or difficult at times but not “impossible” can go along way in changing ones perspective from why bother just leave me to my misery to one of wow look what I did, I helped, I achieved, what else can I do! Maybe even something as simple as learning to read a foreign language if she’s an avid reader, you don’t have to know how to pronounce the words or carry on a conversation in French to read and enjoy Cinderella in the original language, rather like Latin that has become a dead language but is still read by many.

Thank you! We are in NJ so have many options. My mother and my other sister and I are trying to find out as much as we can. She is completely argumentative with my mother and my other sister so I'll probably be the one suggesting things. We want to gather as much information before we brooch the subject with her. There are times she's crying saying she wants to go to the hospital, an hour later she wants to wait. I know she used to like to crochet and my 15 year old daughter does as well. But, my sister smokes in her house and it smells horrible. My daughter is not thrilled with that. She doesn't smoke when she's there but it still is everywhere. Unfortunately she can barely leave her house and when she does its for a doctors appointment. We are at our witts end.

Thank you! I am going to discuss all of this information with my mother and other sister.