I. Am new here. I have lived with MS for 39 years and have taken many punches and got back up — so to speak — especially physically. I am wheelchair dependent — actually I rely on others to help me with just about everything as well, including being able to get myself in and out of bed, getting on and off the toilet, showering, dressing — all the basic essentials except for eating. I am thankfully left handed, and that hand and arm are the last of my fully abled limbs. My right arm has contracture for many years , which has caused the arm to stay bent at the elbow, and the fingers on my right hand to curl into a fist. Both hands are always in so much pain! For the past 6 months or so, I feel my good left hand in more pain and contorting into unnormal positions and wanting to also start curling if I don’t conscientiously keep it flat. I have had arthritis and strength testing by my neurologist. He says its the MS and there is nothing that can really be done. Does or has anyone else experienced this? It’s very scary! Any advice please? I am very healthy as far as my weight, diet, blood pressure. Seems every way except MS. How will I survive? I am VERY freightened!
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Lulu521
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Welcome to our family. I’m sorry about your pain, but you are an inspiration with your great attitude.
Has your doctor not recommended physical therapy to help maintain function, relieve the pain, and prevent further contractures? It may be worth asking for that.
Welcome to our loving group. I'm sure this must be so frightening for you. I agree with greaterexp about physical therapy or maybe a look from a different neurologist with a fresh perspective. Have you tried an MS Center?
Hi Lulu and welcome. Sorry to hear about your hand issues. Yes it may just be your MS, PT is a great idea, but perhaps you need some input from an Orthopedic hand specialist.
Thank you so much for responding. I did Occupational Therapy 4 weeks on 3 or 4 times throughout the year for years, but it got to be too expensive with having to pay $30.00 twice a week for co-pay. My nurse and I exercise every day during the week, and we do all the exercises I did in OT. I also used Diclofenac Sodium Topical Gel 1%...very expensive $48.00/tube and my insurance does not cover that and I wasn’t feeling any relief. I have been using my Nero since 1995 and he’s always been very good to me. I’m succumbing to the realization that having survived this mean monster for going on 40 years this coming spring, it just is what it is now. It is SO financially expensive, and we ALL know the high cost we pay in our struggles with MS physically, emotionally, and spiritually. My heart is for ALL who live not only with MS, but ALL chronic illnesss – Especially for those who are not as fortunate I am to have such abundance with loving family, crumbs and equipment needed in order to even just basically survive. I wish everyone a wonderful day as best as you can have. ❤️😊
Have you considered a baclofen pump? I have had MS 30 yrs and got the pump last year because of strong painful muscle spasm. It has helped quite a lot.
My first pump was inserted in 1998. #5 surgery will be in the summer of 2020. Yes, it has been a wonderful I help for my severe leg spasms for all these years. In fact my next refill appointment is this coming Thursday, the 8th. But since the liquid baclofen is heavy and travels downward, it does not do very much for the upper portion of the body. Mine is inserted about an inch to the right of my navel. I even wrote and published a book about my MS Journey, and that story is in the book. I called my pump my titanium and Angel. ❤️😊
I also just discovered CBD oil. It is derived from marijuana plant but has NO side effects. NO drowsiness, munchies, etc. It does help my pain more than muscle relaxers. I buy at health food store.
I used 3 drops twice a day for a while but now take an oral capsule instead because the drops were in a very sticky base. The capsules are according to my health food store owner "the strongest" ones they offer.
Lulu521 hello! I am so sorry for your situation. It frightens me, as I have PPMS and can see myself in your spot in the future. You inspire me with your attitude. I started suffering terrible pain in my hands about 18 months ago. I have always had excruciating all over body pain, but the hand pain was new. I then got the same pain in my feet. My hands started “clawing” as I call it, and I have to work with them each day to maintain use. I struggle to use eating utensils. I have found this season that the cold seems to be making it exponentially worst. I realize this doesn’t help you, other than to let you know that you are not alone in this battle 😘. I hope you come back often and let us know how you are doing! Much love, Kelly xx
Amore55 I certainly understand the pain also throughout the entire body and feet as well as our Hands. And, once the weather gets cooler and temperatures drop lower than 75°, my hands are like icicles and my feet Like Popsicles. I wear fingerless handwarmers on my hands from late November till spring – even when I am in bed sleeping. The extreme heat is also REALLY bad. I just stay indoors where I can stay be in the air-conditioner in the summer, and keep the temperature at 80 in the winter. I really do miss being outside. I love fresh air and nature. I have been kind of shy about saying anything on here, but then I knew I needed to get brave and share. I wrote a book on my journey with the ms. That really helped me release so much of what I had kept inside for many many years. Thank you for sharing about your pain throughout your body, feet and hands. I will keep you in my prayers of comfort. I hope you have a good day! ❤️😊
My right hand is being affected by MS. It wants to curl up too. I make it a conscious effort to flatten it out when I rest or sleep. I can’t say I’m either winning or loosing the battle just yet, but it’s something I can do. Massage helps it feel more normal for a while. I don’t have the pains you are suffering from, but the psychological affect of losing the use of it is severe. Do whatever you think works and let us know if you are making strides.
Hi...I have a very close friend who has had MS at least 25 years with 20 of them in a wheelchair. She has had the same hand problem as you described. I can tell you that you’ve got the right idea; she did exactly the same thing. Every day, finger by finger, she straightened them out until her hand would stay open. It won’t happen overnight but the more you work with it the better it’ll be...good luck!
I received your profile today, and found your story similar to my own. I was diagnosed with m.s in 1997, dealing with losing my walking for 13 years. I'm so thankful for my husband, who literally takes care of me completely, along with a full-time job and our pug, who keeps me company while he's at work. My fingers are wanting to curl, as well. I love getting my nails done, and so I had to find out more regarding my fingers. I have an appointment to get my hands fitted for a brace, which is supposed to gradually open up my fingers. I know we're all different, but I hope this could work for you, as well! I guess I need to write a more in-depth story on myself for my profile. But please know I hold my faith in God very dear to me. I can't conceive going through this journey without the strength, peace and joy of God. I truly pray God's love to surround you!
I can only imagine what you are going through. I am new today to the group, but am suffering from a lot fewer symptoms at this point. I am 8 years into by RRMS diagnosis that I received at 6 months pregnant. I struggle with balance and walk with a cane for short distances, bowel and bladder incontinence and weakness in my left leg. The problem that I face is acceptance. I am not there yet and I am sill so distraught by my inability to perform tasks. I hate having to ask for help and can only imagine what it is like for you! How do you accept it??
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