I posted 9 months ago 're very bad neck pain and my GP stating she did not think I had pmr. I was referred to a geriatrician but this was obviously cancelled. My pain has been ever present in my neck but I do regular exercises and Pilates ( sometimes without any neck work ). Things started to get a bit worse about 2 months ago, the neck pain was irritated further by anything I seemed to do. Saw a lovely physio who tried various things to help but nothing has helped. Finally contacted gp ( different one this time) he was sympathetic and managed to get me an appointment with geriatrician in December. He also ordered blood tests. Anyway things have gone downhill and I feel like my whole body is hurting. My hips, glutes,,pelvis, shoulders and upper back. Even the skin around my hips is sensitive to the touch? I am also feeling it during the night for the first time. Very down and don't know what to do. I am on 5mg per day. I cant go on like this until the appointment. I guess I will go for a telephone call and try to get the way I am feeling over in the hope they give me some good direction!
Feels like a flare: I posted 9 months ago 're very... - PMRGCAuk
Feels like a flare
Feeling pretty much the same.....just hope we get some answers.......thinking of you....
I can't add any more to the reply I gave on your last post months ago - you have all the signs of inadequately managed PMR or, alternatively, something else with a polymyalgic presentation. If it improves on pred it is inflammatory, whatever your blood markers do - and up to 20% of patients with PMR or GCA have blood markers that remain stubbornly within normal range and don't change even on pred.
Does the skin sensitivity and the night discomfort point to PMR? Would you suggest I ask for extra pred to trial a test higher dose?
I think I have only come across one rheumy who recognised the skin feeling - it is like the feeling you get with flu, that it hurts to touch. I had it and I've heard other patients mention it.
It depends what you mean by night discomfort - what sort of time and what sort of discomfort do you mean?
Without knowing rather more about the history of your pred dose it is difficult to say - you have objected to increased doses to manage a flare before - but if it is PMR then there is no point being on too low a dose of pred to manage the symptoms.
I am not a great sleeper and have noticed when I wake in the night, I can feel the aches and pains, this is new. I certainly will not object to a raised dose but after the last gp appointment telling me I don't have pmr ( also informing her of research 're blood tests ) it has left me full of doubts.
Mmm - but at what sort of time? The new batch of inflammatory substances is shed in the body about 4-4.30am and starts creating inflammation then.
I usually wake twice , around 3, then 6 approx. Last night each toss and turn I could feel the achey feeling around my hips and shoulders.
Does the 5mg provide relief at the time you take it, or at least, a couple of hours later? How long does that then last?
No its not providing relief, ( I dont know how I would feel without it) that's why I am so down and unsure of what to do.
I'm just a bit confused about how the nightime pain fits in - if you aren't having any relief anyway,
I have been having gradually increasing pains in hips, pelvis and glute areas. The last two nights I have been aware of the pain when I wake during the night. It has not been too apparent when I go to bed. Most days, I do a long walk with my dog and do gentle exercises and the pains, although still there are definitely lesser as the day progresses.
Right - I may be wrong but it suggests to me that it is possible that the 5mg is not quite enough and that means not all the inflammation being created each day is being dealt with, leaving a bit left over that has mounted up to a level where it is causing symptoms again. One approach could be to take a higher dose for a week and drop back to a lower dose and see if that works.
The question is whether you got relief at a higher dose and when it became less. Plus, how quickly were you reducing the dose.
When I tried 15mg at one doctors direction (over a year ago), it did nothing for my neck. I did try 10mg earlier this year, again it did nothing for my neck but it did ease the hips and pelvis. I then went back to 5mg after 5 days. The pain back then was not as apparent as it is now. I will give 10mg a try, after talking to the doc as I won't have enough pills!
If the neck pain is due to spasmed muscles then oral pred won't achieve much - that requires more targeted treatment, often physical therapy approaches. I think you need to start from the beginning - because you don't really have a diagnosis, not even a putative one. But you shouldn't just stab about with various, mainly inadequate, pred doses.
I have not got spasms in my neck, general pain, stiffness and aches around the shoulders and upper back. When it is bad I get some numbness. I have seen my physio and do excersises very day. I am more confused now than ever? I was diagnosed 5 1/2 years ago , by putting me on a High dose which worked within hours. Throughout the years although my blood tests have never shown it, my treatment has worked. The first gp got me down to 10 mg per day then I went from there always very slow. At the end of 2018, I was down to 1mg every other day and all was well ( apart from the other health issues). Then out of the blue, last summer my neck pains started, quite severely and nothing touched it. One GP put me up to 15mg but this did nothing.( I do not actually believe this is to do with Pmr.). Fast forward to the doc who has referred me to the geriatrician, it is she who does not believe I have ever had PMR. The pains in my hips pelvis and glutes are similar to the first ever pains which is why I am presuming it is PMR. You are saying I don't have a diagnosis and should not just stab about with pred doses? Please tell me how to get a diagnosis? I cannot go on like this until I see the geriatrician so I must try something.
By spasm I am referring to extremely tight muscles, in spasm as opposed to cramps. If you press the muscle it is hard - it shouldn't be, it should be soft.
Given the state of the NHS at present there isn't much choice I fear except private. I had 5 years like that with undiagnosed PMR - I only survived because of a superb Bowen therapist and membership of a gym with a warm pool with aquafit and top class Pilates and Iyengha yoga classes. Here in northern Italy I have access to a pain clinic that looks for the source of the pain and physios who understand PMR. I have to pay for some of it - but it is worth every cent.
Since "slipping a disc" back 1977, and which was first diagnosed and treated as muscular and only 14 years later after an MRI scan for it to be recognised and accepted for what it truly was, I've suffered with all different types of pains from toe to head and including sporadic bouts of "unexplained" neck pain. Then in the late 90's my GP decided to treat it as a stand alone issue and prescribed Mobec and it's worked ever since.
Finally, I've always found that pain and discomfort do seem to woresen during the night, but have come to realisation that there is less going on to distract one and laying there undisturbed is a great opportunity for feeling sorry for onesself and which I believe we are all guilty of!
I have always been a poor and light sleeper and most nights I will read two of three times . This is why I have said this is a new thing. The aches and pains I feel during the day, I am feeling during the night. Yes it is easy to feel sorry for oneself!
Yes but what I'm suggesting (from my experience) is that you try and isolate the neck pain and if you can then successfully treat that, then the air of positivity will improve things further. By the way, in addition to all the back pain& replacement hip, I had GCA back in 2012 and I now have PMR and there's no confusion as to regards any neck pain I might now get!
I have been trying to treat the neck pain, but nothing seems to work. I am a positive person, I just voice my deeper thoughts on here or with a doctor or close friend. I still work, as a professional photographer and I love my work, it certainly keeps my spirits up!
What have you tried?
Various pain killers. Physio which is ongoing, she is excellent and understands the pains. Tried a tens machine. Tried chiro. Tried acupuncture. I do yoga and Pilates on a regular basis. Had an MRI of head and neck.
I fully empathise. My “ story” is pretty identical, except I am at the beginning of trying to get help for severe neck pain. I can walk the dog pretty well during the day, but when I sit or lie don’t know what to do with myself. I was given Diazepam back in the Spring for Intercostal muscle spasm which was so severe I went to A and E as I could hardly breathe. Although this helped the cause wasn’t looked for until other symptoms crept in and I was eventually diagnosed with oeisinophilic oesopgagitis.Anyway, I take half a Diazepam to get some relief at night though pretty sure the GP won’t prescribe any more for this pain. The thing is with pain, when some 30 something GP tells you “ oh but addiction” at my age you feel like telling them you’d take Methodone if it would help!
Thank you.
Things are going from bad to worse. The pain in my glutes have worsened and last night it was constant shooting pains down the back of my legs. Could not find a position to ease things. Sounds like I may have tweaked my back to cause this type of sciatic pain. Surely not related to PMR?
If you have myofascial pain syndrome alongside PMR (there is a link) then the back muscles could be causing the sciatic problem, in particular the piriformis. The sciatic nerve passes through the middle of that muscle in many people and if it is tight it irritates the nerve.
Doc sent me for an MRI when The pains in my legs were getting worse, just got the results.
It seems I have two disc issues.
One on the left side 3 up is bulging, this can be left and should settle with time and exercise.
The other is the bad one, bottom on the right. The bulging is quite extreme, putting pressure on the surrounding nerves, which explains the pains in my leg, butt and lower back. The good thing is my spine does not appear to be compromised by either bulge.
He is referring me to the Spinal specialist unit and suggests it will require an operation to shave off the bulging part. I did query if it could heal, improve on its own and he said not.
I am ok to continue with the sciatic exercises and walking but nothing strenuous. He has prescribed different painkillers as sleeping is difficult.
I did explain to him that I am at a loss as to what pains are what. Some of the pains are very similar to my original PMR symptoms.
Has anyone got experience of this, I am not relishing a back op.
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