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ppms

diagnosed in 1994 at 50 yrs old. On MS meds for about 6-8 yrs. Dealt with recurring loss of balance until 2013. Had CCSVI procedure in 2013 which made a huge difference in my life until approx. 2019. Now this horrible stuff is really making itself known. I am 79 yrs old and the pain in my legs and back is making it so hard to do anything. Fatigue is also a factor but God has been good giving me my wonderful husband, caretaker.
Any ideas re what to do for relief of pain. The area in which I live has a neurologist that is 2 hrs away. That is out. Thanks for any an all responses.

  1. Hi, ! I am sorry you are dealing with chronic pain issues. I know you said seeing s neurologist is not easy for you, but do you have a genera practitioner who would feel comfortable prescribing pain medications or offering you a referral to a pain specialist? It can be hard to get certain pain relief medications, due to the opioid crisis. If you would prefer to avoid conventional medications, there are other treatments that might help, but it's a bit of trial-and-error to see if they might work for you. Some folks have had good luck with massage or hot (like hot tubs) or cold (like ice packs) treatments. That said, I am well aware that many people with MS have extreme sensitivity to hot or cold (or both), so please be careful trying any new treatments. Here's some basic info of natural treatment options -- https://multiplesclerosis.net/natural-remedies/chiropractic-massage-pilates. That said, if you are dealing with nerve pain, it's pretty hard to manage that with less invasive options (like surgery of pain meds). Is CCSVI an option you can try again?


    This article is more about living with chronic pain (without losing your mind) and I thought you might find it interesting -- https://multiplesclerosis.net/living-with-ms/psychology-living-chronic-pain.


    And here's a conversation from our forums on the topic of pain relief -- https://multiplesclerosis.net/forums/ms-and-pain-relief. If medical marijuana (or recreational marijuana) are legal in your state, it might be something to look into as well.



    Honestly, I doubt I can offer any suggestions you haven't heard before or tried, but I hope some of this information is useful for you.


    Best, Erin, MultipleSclerosis.net Team Member.

    1. CCSVI basically took care of my instability and dizziness so it would not help with what I am going thru now. Thanks for your interest and reply.

      1. , ok. I am glad that your instability and dizziness are still doing well. I really wish I had some fabulous answer for you, but, as you know, MS pain is really tricky to manage.


        I hope other community members chime in with some helpful suggestions. And I am glad that your husband is such a good caregiver and source of support for you 😀


        Best, Erin, MultipleSclerosis.net Team Member.


    2. I am just taking one day at a time. Today it is anxiety attack...chill pill time.
      I thank God every day for such a man he has given me and also pray for help when things get bad. He always answers my prayers. He has suggested I take some answers from the MS community. Thanks so much.

      1. Brownie@ I was diagnosed with PPMS at 60 in 2017 and although it has been slow progression I can see the progression especially when my Ocrevus infusion is wearing off. I am more unsteady and prone to falls but I try to brace myself. I get that “drunk walk” when it is wearing off. My rollator is my best friend. I have learned to exercise and use ever assistive device I can get my hands on. My 2 sons and their wives have been my rock.

        1. that's wonderful to hear that you have supportive sons and daughter-in-laws. Living with MS is not an easy road, so it's important to embrace support from family and friends as well as all the assistive devices that you talked about.


          Thanks for sharing your experience here. We're stronger together and it's always important to be reminded that we are not alone in living with MS.
          - Alene, moderator

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