Last reply 2 weeks ago
New to MS

Hi I’m looking for advice really or other peoples experiences, so I found out I have demyelination in my spinal cord upper and it caused by MS at first I was really scared cried a lot but I’m getting used to it I guess. I have a lot of pain upper spine and back shoulder neck and back of head, I get a lot of spasms in legs and feet cramps I suffer with facial twitches and get very very fatigued. I’ve always had anxiety and depression and this has become worse lately the medication my consultant put me on doesn’t help it makes me feel so sick I take oramorph to help me rest but I was wondering what can I do to help with my pain ?? And what helps I try to stay active but as each day goes by I feel worse I prob have one good day a week I feel so low especially as I have young children and I’m just too tired to do anything with them 😢😢 x

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stumbler
2 weeks ago

@isabel-39 , contact your MS Nurse to discuss these issues.

You could maybe benefit from Baclofen, a muscle relaxant :-

https://www.mstrust.org.uk/a-z/baclofen-lioresal-lyflex


lori123
2 weeks ago

@isabel-39
I am so sorry you are having a hard time.
Yes for me I get every other day! I am so tired all the time and I tried all the medicine for fatigue. I understand!! I have an 11 year old and yes he misses his mommy without MS! You just have to plan things out now! I just do things in pain. My MS effects my legs I get an hour of walking a day!! I walk and sit all day. You just have to find the things you can do and focus on that!! I wish you all the best!


itsmewithms
2 weeks ago

@isabel-39 MS is so many things and so different for everyone. My issues are more towards gait and balance and my spinal lesions are lower than yours it sounds like. I also feel that I get one good active hour a day and try to organize me day to prioritize on what is important to do with of for my daughter and family. Thankfully I am not working right now or all my “good time” would go to them going to and from meetings or even getting lunch. My daughter’s name is actually Isabelle 😉

I didn’t really understand how much “nerve pain” was impacting my life until I spent a week at Mayo really going over all my issues from both MS and a hip replacement two years ago. When scheduling the appointments the nurse asked a lot about my symptoms to make sure she had the right people lined up for me. She doesn’t have MS but had a condition that impacted her nerves and said I should ask my Dr about Gabapentin and see if that helped. A Dr friend that has Lupus (attacking her nervous system) said that Gabapentin was good but she she recommended a related slow release version called Gralise. I have moved onto that and feel it helps a lot. A friend had recommended Ambien for sleep and I tried that a bit but found regular over the counter Tylenol PM works well for me. Add that to the evening dose of Gralise and I am finally getting the 7-8 hours of sleep I need. Sleep and stress are the #1 and 2 factors that will really bring on MS symptoms.

My daughter is 17 so is able to be so independent, especially since getting her license and her own car. That is a wonderful help! But I still take her (and a group of friends) to things like the Renaissance Festival. I give them my schedule of what stages I will be going to, carefully plotting my path in a organized circular pattern, and they flitter about and check in with me occasionally. We both have a great day as she isn’t pulling me around like an anchor and I prioritize what shows/stages I go to. I don’t waste my “golden hour every day doing things I don’t enjoy or don’t benefit my family or me. My husband has a habit of starting a conversation with me when I am standing or walking by him. Ironically it is usually while he is sitting ;-> I ask him to stand while I sit or I go to a place where I can sit down and then we restart the conversation. I simply can’t stand around. I also find that I can walk full out for a good time but can’t walk on uneven ground (or pavement) and can’t take small mincing steps like waiting in a grocery line.

I use a walking stick if the surface is challenging and had an AFO to help with foot drop since spring. I started having more issues through June and found that is no longer enough or helpful as it was before. I have been trying FES devices and found that the L300 Go from Bioness was better for me than the Walkaide. I have the paperwork in the pipeline to see if I can get insurance coverage for it. Crazy that they will cover over $80k in cost for Ocrevus and then have issues with $5k so I can walk! that is insurance logic I guess! At one point I had fingers that would have an occasional burning/pinched nerve sensation and the massage person I see said my first rib wasn’t staying in position and was pinching a nerve. She told me to see a Chiro and between his adjustments and picking up belly dancing (there is a lot of core training, shoulder and neck work in that!) my neck and shoulder issues were resolved. That was like 10 years ago 😉 now my gait issues wouldn’t really allow for belly dance. Maybe I can play with that if I have further improvements with Ocrevus.

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