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How do I deal with pain of Fibromyalgia? (and MS)
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An_248755 posted:
I also have had MS over 20 yrs and for years I had no pain but the last few years my pain has worsened, especially in my Neck which is a spasm and starts in neck then it runs down my arm; and then make a fist. I also have restless legs in that I lay on my couch almost every night and kick hard until my meds kick in. (pun-ha) I use a walker and am getting slower & slower. I don't use my power chair much. I also have neurological pain elsewhere when I walk such as burning inside and out of my vagina. (Dr's says it's MS) the Fibromyalgia just goes along with the MS because it's a neurological pain. It's an ache I feel all over. I've tried acupuncture for my neck pain some. (I'm not sure if that helped me really just like the meds Cymbalta, Lyrica never helped me but just made me feel weird. A hot shower on my neck feels does good but only temporarily.
Moving even when it hurts seems to help some. But I admit sometimes it's hard to get going! Ofcourse my MS I deal with lots of things: foot drop/wear afo brace/ bowel/bladder issues/ etc etc.
What helps me is my hope in the LORD and prayer. I'm so grateful for so many things I can do/ paint/write/enjoy
grandkids/husband/family/friends. I'm starting to see the pain show up in my face lately- sometimes I grimace...A radiologist who did my first MRI years ago told me that he believed we ALL have ms as we age so maybe thats why I feel I relate to much older folks sometimes.
I've always said I try to be thankful for what I CAN DO and not dwell on what I can't but when you're dealing with pain it's another story!
Thanks for listening!
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An_248303 responded:
Hi Hun... I too have had MS for about 20 yrs... FM for about 5 I think... RSD for 30 and now Parkinson's was just diagnosed... It all started 30 yrs ago when my son stepped over me on the bed and I was paralyzed from my waist down for 9 months for no unseen reason... Perhaps maybe the beating I took the night before... A delayed reaction... We will never know... I felt like the worlds biggest guinea pig.. For over 3 yrs they fought to find out what went down... Today I still feel like the worlds greatest guinea pig for there is over 30 things to deal with in this strange body of mine and a lot of which cause chronic pain...

I can remember the day they told me I had MS... I had so little hope in finding any answers anymore... Just hearing they found something was a relief... I fought in and out of wheelchairs and off and on walkers... Got a new wheelchair a couple of months ago... still no electric one... but I use my legs to move it more then my arms...I have a walker with a chair ordered for me... They wrote the prescription out wrong so had to go back to the dr lol... My walker tends to fly across the room lol... I tip over a lot...

The pain well... I spend most of my time evaluating it... I do different exercises for everything and on my "good" days... yeh right... I do them all... But I keep going... Sometimes it is hard...

Luckily I live with my son and 2 grandchildren and they keep me going... I heard my 5 yr old grandson say for the first time "let nany rest a little she is doing the parkinson's dance" just yesterday... Him and his 4 yr old sister are getting very in tune with me and that is good for I still find the energy to babysit them sometimes... It is rough when they have their bad days but they usually calm down if I tell them I am getting sick... Or have a headache or I am hurting...

They give soft hugs now.. and lots of them... I really appreciate them even tho they hurt so bad...

It is good to not dwell on what you can't do and be thankful for what you can... And yes when the pain is bad it is hard to do... I always try to remember that no matter what my illnesses have taken from me I am still me on the inside and they can't take that... I even started writing a song so when I have a bad parkinson's day I sing it... "I'm doing the Parkinson's dance... I'm in there some om om where... I'm doing the Parkinson's Dance the Parkinson's dance the Parkinson's dance..." lol... It helps others and me laugh... and I told my family when I can't sing it anymore they are to sing it to me... So I can still laugh on the inside..

Sometimes the grimace of the pain gets stuck on my face... It is like it locks up... My grandbabies ask me if I am being grouchy... lol... My face doesn't want to smile then but I do...

I fight all this by consciously working at accepting things as they are and accepting myself as I am today... It is a moment by moment chore but it is a doable one... and It keeps me in a more positive frame of life... You know the old saying "acceptance is the key to all my problems"... It works for me.. I am not perfect and do get mad and depressed and sometimes wish I weren't here... but I have plenty of reasons including the respect and love I feel for myself to go on...

Hang in there... Believe in yourself... Know you can deal with this... Come here when you can't and vent... it helps...

Take care... Love... Jan/Dakota
 
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xperky responded:
Sorry to hear of your combo of painful illnesses. It sounds like you have a good attitude and you have figured out that moving around some is better than sitting still all the time.

I hope you can find some better pain relief soon. I imagine you have told your doctors about it being worse already. If not, please ask them if there are special stretches, exercises, water therapy, and/or medicine you can do.

Thanks for your input.
With Compassion,
Margaret


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