I think I may have mps but no confirmation. Originally thought pmr but steroids didn't kick in as the should. Seen rheumy, had X-rays, blood tests and going for another MRI and dexa scan. Quick searing pain in thighs -excruciating and leg gives way. Also in shoulder. On 25mg pred. and naproxen plus tramadol for pain. Don't see rheumy for another4 or 5 weeks. Not sure if anyone else has had similar - perhaps Eileen. Don't know how to deal with this. Any suggestions.
Does this pain in thiighs/legs affect you equally both sides, equally standing or sitting? Does anything seem to provocke it? Does it radiate to toes? Which ones? Your shoulder pain may be a separate issue or they both start at the same time?
Hi Andres,
worse in right thigh but still bad in left. Difficulty standing when seated and have to slither feet along the ground to ensure the leg will take the weight. I am or was a very fit and active person until this. I am better being on my feet continually as the legs will move ok but when I sit and get up all goes to pot. However can't stay on feet all say-too tiring. Doesn't radiate to toes.
This does not sound at all like PMR and that's being confirmed by the fact that Prednisalone is ineffective.
Wonder if you have degenerative changes in you LS spine. But that should have been picked up by x-ray and/or MRI. Glad these are being repeated because I'd say that's where the problem lies. Take care and good luck.
If it is mps the ways to treat it are any approaches that will identify the trigger points involved and then mobilising them They can be mobilised manually by a (sports) massage therapist or a physiotherapist or you can have cortisone injections into the area or more generally for the spasmed muscles that tend to be the result of mps. I also had "needling" - this is repeated insertion of needles with or without cortisone, a bit like acupuncture in some ways, it is excruciatingly painful as each needle goes in but the effect is worth it. It is quite generally used in mainland Europe and there are clinics in the US that offer it but I'm not sure about the UK - I think I did find a few places that did it last time I looked for info about it. And the gentlest way I have found is Bowen therapy which is bascially a very gentle "osteopathy" for soft tissue - no cracking of joints, just very gentle positioning of muscle groups. It sounds bizarre, when you first have it you wonder what good it can do - but I and several friends have used it and achieved almost miraculous relief from this sort of pain. One lady was confined to bed, could barely walk even with a zimmer frame - after the first session she walked back to her friend's car and realised she'd forgotten her walking stick that had supported one side when she went in with a friend supporting the other! She had 3 sessions over a few weeks and since then has had maintenance sessions and it is improving continuously. I used to have a couple of sessions every 6 months or so - for some things it will work and you don't need to go back but I have an ongoing back problem so the muscle problems continue.
A study did show that Bowen is very good at relieving frozen shoulder - so this sort of pain should respond.
Hi Eileen.
does mps present itself worse when getting up after being seated. As said I'm not sure what this is but do need an answer - the pain is really bad down the thighs but improves a bit when walking. However can't keep On my feet all day. The leg gives way when the searing pain hits. Went for massage yesterday to a physio who knew what mps is and it was grit your teeth time! No better, however, today. You seem veryknowledgeable so would appreciate any help or advice you an give me
Thanks Andrew, MRI on spine showed minimal change-not enough to cause the pain I'm in. Getting MRI on both thighs so hope something/anything shows up. Can't bear this too much longer. Thanks for the support
Marjorie, pre PMR diagnosis, I was bedbound for several months. At one point when I tried to get off the bed to go to the loo, my leg completely gave way and seemed totally paralyse with no life in it - really scary. For years, I have had a slipped vertebra at the base of my spine so in the absence of a diagnosis I was convinced all my body pain was due to my spinal problem. Although within a year, I spontaneously recovered, it was short-lived and I was eventually diagnosed with GCA with a return of what the previous year had, in fact, been undiagnosed PMR
I hope the repeat MRI gives some answers as to whether you are experiencing a combination of perhaps both PMR and a spinal slippage or trapped nerve. Certainly if you could be referred to a pain management consultant, they may be able to get to the root of the problem and, if necessary, inject the trigger points.
Eileen has given you great advice re other possible treatments. Just be careful with physio - no usual manual techniques, just in case you do have PMR as such techniques are contraindicated in PMR. Just gentle massage and heat treatment can help.
Thank you so much for advice. I am getting desperate.
Marjorie, I have mps as well as pmr and issues with degenerative disease in my spine. I find that deep tissue massage really helps release the trigger points I have. I purchased my massager online through Brookstone. It also has a heat setting.
It does hurt like the devil when you first use it, but you can gradually build up your tolerance to the massage. I call it my "better than sex" massager!
Bedilia, sounds like good advice and glad the massager helps. Your last comment really made me chuckle!
It's true! When I'm really having a lot of pain, I reach for the massager instead of a narcotic!
I was told I had MPS and some of your symptoms sound similar but not all. For example I get pain and stiffness if I sit for too long and when I have to get up from a seated position. But the pain is more of a dull, nagging ache and fatigued feeling rather than "searing".
I've never had a leg give way, although I do get 'jelly legs' sometimes where I feel unsteady. Muscles also just feel generally tender to touch, almost bruised, especially the leg muscles. I was also quite fit and active prior to this.
MPS also has lots of cross over with Fibromyalgia symptoms. In my experience symptoms haven't got better but haven't got worse either, just fluxtuate day to day.
MPS is not thought to be inflammatory so anti-inflammatories like naproxen and prednislone don't work. I'm not convinced you have MPS or PMR based on your description of symptoms, but I'm not a medical professional.
Research has shown that the trigger spots noted in mps are concentrations of cytokines - the same substances that are shed in the early morning by many cells in the body and which cause the early morning stiffness seen in arthritis and PMR.
Your description of stiffness after sitting is also a typical finding in PMR - it is called myogelosis - as is the tender sensations in the muscles. It is also possible to have both PMR and mps - and the guy who did the research I referred to (he's an orthopaedic specialist) told me he frequently sees both together. At the higher doses of pred for PMR the mps is improved but then resurfaces as the pred dose is reduced. Using targetted cortisone shots for the mps can assist the reduction of oral pred for the PMR.
Hi Eileen,
Good to hear from you again. Have taken note of what you said re. Bowen and am attending someone. Have been twice. He's not sure whether it is mps or pmr or won't say. However, do find a little help here, as my pelvis was out of alignment. Am trying to wean myself off the steroids slowly as I'm not sure they are helping.. Pain still bad in thighs and shoulder but painkillers help. Walking still difficult. Rheumatologist has not given a diagnosis yet but had last MRI yesterday and he has promised to come back to me if anything shows up. Am between the devil and the deep so I think it's a case of trying to help myself. meantime.; Any other advice you can give would be gratefully received.