jdd0310 07/05/17
Last reply 9 months ago
Pain

Ive got PPMS and I don’t normally suffer with pain like so many others seem to. Every now and then I get a sharp pain in my right buttock about where the thigh bone joins with the pelvis. I’ve tried all sorts of pain killers including paracetamol, nurofen, gabapentin and amtripteline. None of them do any good. I’ve seen several doctors about it, had physio, acupuncture, steroid injections and even had an epidural. Nothing I’ve tried has done any good. Anybody out there had the same? Found out how to cure it? Doctors have given up trying to hep, I can’t get hold of my MS Nurse. I’m getting really fed up with it, I can’t sit anywhere comfortably.

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merfield
9 months ago

How strange, I’ve got the same. I’m also PPMS, though I’ve only had the feeling about 2 weeks but it’s hampering my exercise regime ( such as it is ). It’s worse in the mornings or when I stand ( wobble ) after sitting for a while though it does seem to ease off after being on my feet and moving ( as much as I can move ). It really hurts. I thought my hip might be ‘going’ but my MS nurse thinks it’s MS linked. I was hoping it might go but after reading your post it sounds like we may be stuck with it. Can you sleep? I am ok sitting down but the knife feeling when I first stand is awful. If you find anyone who’s got a cure, please let me know. Maybe @stumbler might know, he’s pretty clued up. Good luck.


stumbler
9 months ago

@merfield , thanks for the vote of confidence, but I’m afraid that I’ll be unable to match the combined wisdom of the medical profession and the complementary therapists.

If it’s not a job for a physio (muscular) then surely it’s a job for Orthopaedics (bones). Otherwise you need decent pain medication to hide the pain.

Or, possibly CBD oil or “medical” marijuana……………..


jdd0310
9 months ago

I knew it was worth asking. Somebody on Facebook suggested tramadol. I’ll mention cbd and tramadol to my ms nurse if I ever see her.


petlamb
9 months ago

@jdd0310, that sounds exactly like what I’m currently experiencing.

I’ve had MS since 2001 (RRMS) with the first CIS in 1997. Towards the end of last year was dx’d with SPMS. The pain I’m getting (in exactly the same place as you but on the left side) seemed to coincide more or less with the SPMS dx. I’m now wondering if it’s anything to do with progressive MS? I originally thought it was sciatica (and another problem to add to my ever expanding collection of health issues) but the neuro-physio I’m seeing at the moment says it’s not sciatica but that it’s “connected to my MS”. With me too, it eases off after being on my feet and moving – but therein lies the rub, my mobility is slowly getting worse ……….

It’s driving me mad, as, like you, I’ve tried many pain medications, but nothing touches it. Until someone comes up with a drug to combat it, it seems that sitting comfortably is a thing of the past. As well as the pain that it’s causing, it’s affecting my posture whilst I’m sitting – which isn’t a good thing.

To add insult to injury, I’ve got two other problems in the same area on the left side. The first is a hip problem, which have had two jabs for because the doc thought it was bursitis so he gave me two cortisone injections because the first didn’t have any effect. The second didn’t work either and I am now seeing a hip specialist who seems to be flummoxed and in desperation is giving me an injection into the bone on Friday. I am worried that if this doesn’t work it might mean a hip replacement as I already have arthritis in my hips and knees – but I’m only 49 and am told that it is WAY too early for such an op. The second is extreme hypertonicity and spasticity in my left leg for which I am undergoing a home stretching regime.

Grrr – it never rains, but it pours! My medical situation is becoming so complicated with conditions, drugs, contraindications, etc. Sometimes I don’t know which way to turn. Doing exercises for one thing is hampered because of pain from another thing, etc, etc. Now I’m hoping that I’ll wake up one morning and there it is – gone. Yes, I know – highly desperate and equally, highly unikely. 😪

Will keep you posted on how the injection pans out @jdd0310, but if no luck maybe we need to go down the route of CBD oil and see what relief that brings ………………. 🤔


petlamb
9 months ago

@jdd0310, BTW, your MS Nurse is there for exactly this reason. You need her input. If you haven’t got her contact number, write to her. If you don’t have her address contact your Neurologist and request an appointment and tell him.


jdd0310
9 months ago

My MS Nurse called me and seemed to understand my problem and is now making me an appointment with a neuro physio in the hope that we might find a solution. She’s also put me on her list of people to see, fingers crossed, lets see what happens.


petlamb
9 months ago

@jdd0310, Great news! Glad to hear you’ve got people on the case now. Good luck and please let me know how it goes. Suze x

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