Last reply 1 month ago
Newbie

Hi I’m Christine This is my first post . Now I have PPMS . This has been a whirlwind of so many ups and downs .
I was DX in 2003 with RRMS. Mine really started going down hill 5 years ago. I have been having so much pain in my shoulders and legs. My left foot and ankle swell really bad if I walk too much. My question is what do you all do for pain. MS is bad enough without being misery on top of it. Oh. and my husband is divorcing me. Tired of my being a burden. My MS had been flaring bad – I need help to get ME under control to slow the pain down. Any suggestions I would greatly appreciate – thank you ☺️

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jamoranto
1 month ago

SPMS u mean.
I too was diagnosed with RRMS in late 08. I had RR for about 11 years and now have SPMS.
The only thing I can say is eat well try to stay fit. “Keep ur head up” Count all the blessing you do have Enjoy the life that was given to us. Stay positive buds.
Best Jorge


simone2
1 month ago

I take cannabis at night with a vaporizer for pain it’s the only thing that works for me have you tryed cbd oil? if you do buy some make sure you buy 10% or over in strength, hope you meet someone else who really loves you and appreciate you, you deserve better hope you get your pain sorted out soon


loris17
1 month ago

Cannabis at night is what I usually use as well. My Dr does not give pain medication (and I’m fine with that) but has offered muscle relaxer which make me feel worse. Marijuana or CBD Oil.
Sorry to hear your husband is divorcing you. What a shame! Not all men are like that I hope you find someone special to share your life with.
I had only been married 6 months when we found out I had RRMS and my husband is a blessing. He is my anchor!
I hope you feel better soon. Try the Marijuana, I have tried edibles, vape, joints, etc. (only at night for me) but it does help with the pain.
Good luck LoriS17


carroyl
1 month ago

I have lived alone since 1989 it is my choice as I did not want to burden or be rejected by a husband or boyfriend
Mostly u enjoy bring independent making choices I know are good for me tgst includes resting when ever I need or want to
I have friends and extended family to spend time with
The very best pain control is the heat wraps then cold packs 15 minutes for each it was recommended by the ZmS society in Canada
Recently tried CBC oil and it does relieve pain
Find a hobby a creative outlet or any healthy distraction it Is so important for a content and happy day .
There are wonderful people out there reach out I found doing for others what I want in my life always makes my self focus Much happier .


itsmewithms
1 month ago

It would make more sense if you were initially diagnosed RRMS (and initially had attacks and remission) and now have progression without attacks to be classed SPMS as that is what it means. To be PPMS would mean you had an attack and then steady progression since diagnosis. But no matter what we call it we just need to figure out how to deal with it. It may impact what treatment you receive or DMTs are approved.

I don’t see anything in your profile to know much about you like where you are from, your interests or history but the advice above is good. Depending on your country/state and the laws there the allowed treatments vary. For example only in some areas in the US are Cannabis and CBC allowed and only some Drs can prescribe.

I was having a nerve issue last year causing a strange numbing sensation in my thigh and was prescribed Gabapentin for “nerve pain” and some people have said that really helps them. I stayed on my DMT (on Ocrevus currently) to try to hold back MS but this helped with symptoms. I changed from Gaba to Gralise as it is the extended release version and I thought it delivered more evenly. Gaba kind of hits and subsides over a 4 hour period. I am currently an Amantadine as I was having spasms in the afternoon and especially annoying right at bed time. This has stopped those.

So- depending on what your pain is there may be some pharmaceutical help you can get to add to your DMT. I think I also benefit from a good diet, staying hydrated and enough exercise and stretching in a day. Of course avoiding stress is paramount and also so difficult! Especially with relationship issues. So much “for better or worse”, huh? In my case my husband was diagnosed with UC and I stuck with him through that and then many years later I also picked up an auto-immune disease and he has done the same albeit being very critical of my self-care and treatment as he was basically able to “cure himself” but radically changing his diet and strictly holding to it and getting super uber physical condition. He thinks that I should be able to eat away and exercise away MS like he could fix his colon…oh if a brain and a spine were so easy.

So- sometime dealing with his criticism and unfounded optimism is the most stressful thing to deal with ;-0 Setting your course and finding inspiration is my best advice. That could help you find purpose and may help you meet a whole new crowd as well. It seems like every time I volunteer to help with something I believe in I get more out of it than I put in either in something I learn or someone I meet.


stumbler
1 month ago

@christine_reeths , the following weblink is all about pain in MS :-

https://www.mstrust.org.uk/a-z/pain

Understanding the different types of pain, and available resolutions, should point you in the right direction for assistance.

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