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Issues with MS and Muscles

Hi All,

New to this so please bare with me. Iv had MS for over 10 years now and a few nasty relapses (usually on holiday) this year iv had a real nightmare. Im kind of in a battle between various departments in the NHS to find out what exactly can be done to help with my issues.

Exactly a year ago i had a issue which ended up where i was in hospital for over 7 weeks with what started as pain where as a chap you dont want pain!!! Like a constant kick in the you know whats (as polite as i can put it).

After every test in the lower region i was told it wasnt anything to do with my groin or related male body parts.

Whilst being kept in for so long i relapsed but very quickly as usual got back on my feet off the crutches back to feelin alot better but have ended up with what i can only describe as a pulled muscles in the hip. If i sit its bad , if i half sit / lay it moves around the back of my hip, if i stand it goes away.

After a referal to the MSK muscles people they say oh its probably MS and the MS neuro says well its not like anything iv seen before. I personally am convinced its a muscle/ back issue but as alot of people may find on here the NHS love to tar you with a brush, in my case the MS brush.

To cut along story short im still after a year left with horrendous back pain all over upper , middle , lumber and what feels like a cricket ball in my groin high up near the hip. Does anyone else have any expierience of such symptons as im convinced this isnt MS.

This all sounds horrendous Mark. At the risk of kicking a hornets nest, I never thought MS caused pain, but this is based on my own experience so dont pay much attention to this. The reason for me posting is that my brother who also has MS suffered bad back pain and was eventually diagnosed with fibromyalgia. He has since been given tablets which have helped the pain in his back. Just a thought.

All the best

Peter

Thanks Peter,

Tried most of the pills they have offered i totally agree about the pain issue, this indeed is my arguement with the hospital!

MS pain for me is nerve ending pain, pins and needles and burning sensations, to me its a mechanical problem but i will look at fibromyalgia.

The hunt goes on for someone to fix me lol

Cheers

If it changes with movement, surely it must be MSK or some sort of trapped nerve? I’ve never heard of MS pain changing location like that anyway. A really good sports physio or oesteopath might be able to work it out if the normal routes are being unsuccessful? Karen x

Mark I’ve never had pain in the you know whats but I used to get a lot of pain in the hips back down the inside of my legs from the groin to the knees in that muscle and my right shoulder I was told by my physio it was the way I learn to walk again I was in a wheelchair then using a crutch for a while which was giving me shoulder pain but then when I could walk without it I was walking all out of shape and had a really bad posture she showed me stretches and how to correct my posture I also started yoga classes for people with MS that really help it got rid of my pain I know its the yoga in my case that helps with the Easter holidays and things going on its been just over 2 weeks since I’ve been to yoga or physio and I can feel the pain creeping back I can’t wait to Tuesday to get back I know how to do the stretches at home but it doesn’t seem to be the same as when your in a group being talked through them.

You could be different I’ve never had any pain in the balls but all those other muscles I’ve had pain no tablets seemed to work for me just MS physio and yoga

Mark

Things tried

  1. Chiropractor - 20 appointments nope, 2. Physio - got a really good private one , former spinal rehab nurse helped but came back (20 appointments +) , 3. MSK - Think its MS (5 Appointments) , 4. MS Neuro - Thinks it might be MSK as does everyone i speak to , 5. 1 epidural steriod injection didnt make a dent. 6. New bed (did help a little), 7. Gabapentine, Morphine (tablets and patches), ibuprophen, paracetamol, codiene, co codamol, tramadol, diclefenac (no joy), 8. One open air MRI Scan (tunnel freaks me, picture aint as good but ill tell you this for all you MRI phobics its amazing), 9 Xrays of every part of my body (10+) , 10. CT Scan , 11. Various ultrasounds (not nice), 12. Bloods

I must admit though although were not all the same iv never looked at Fibromyalgia till today and so tick every single box.

Problem through all this is i cannot take any pain killers other than paracetamol which doesnt make a dent, all other relief just aggrivates my crohns!

I am very interested in the concept of having both fibro and ms as it would help to explain things. Right now sat at my desk feels like a basket ball in my hip if i stand up it disapears. Gonna go back on the Pregabolin and Gabapentine freaked me out.

The annoying thing is i cope very well with my MS relapses due to the fact that i am positive and work hard where i can, its impossible to fix or try to work on something that cant be found. Also found oxygen therapy very good for relapse recovery.

Very glad though i joined this yesterday not nice to know others suffer but kind of is if you all get me as it means im not alone.

M

M…you will never be alone on here. We’re all in something or other together, through good and bad. Xx