Are these typical PMR symptoms ?
Posted , 10 users are following.
Diagnosed with PMR in April, 2016. Started at 15 mg with good relief of muskuloskeletal pain and have tapered down to 10 mg.
Currently, the inflammatory pain in my shoulders, neck and arms is manageable the majority of time with some days worse than others.
However, I find that the muscles in my lower back, legs, butt and groin "seize up" and limit what I can do and how much I can walk. I also feel very fatigued and have to sit down to give those muscles a rest if I am out and about.
For example, today I went to the store to return some gifts and after only 10 minutes of walking I had to sit down because the muscles in my lower back were in such a tight spasm and my legs felt powerless.
Ironically, I can go to the gym and ride the stationary bike for 40 minutes without issue since I am sitting.
I ask if anyone else experiences this because I am wondering if it's PMR or some sort of spinal issue that is contributing to these symptoms.
Thanks and Happy New Year !
0 likes, 18 replies
amkoffee rocketman42
Posted
It could be either or it could be both. When I was diagnosed with PMR in June I had already been suffering from a bad back for 10 years. I cannot walk more than a few minutes before my back starts to spasm. One of my problems is arthritis in the SI joint that's what's causing the spasms. My guess is that's what's causing your spasms as well. A visit to the physical therapist could solve this problem. Exercises will do wonders to help alleviate the spasms. To be honest I used to get the spasms and then I met with a physical therapist and learn exercises to do that stop them. Eventually I stopped doing my exercises and now a couple of years down the road I am back to where I can't hardly walk at all without spasms. I know what I have to do is get back into exercising and I've started back little bit by little bit. But for me it's a long haul. So I think you could do well by seeing physical therapist a few times. And what could it hurt.
dboza rocketman42
Posted
I was officially diagnosed with PMR in 11/15. Started on 40mgs. prednisone and was finally finished in 9/16. Slowly tapering with monthly sed rate analyzed by my MD. I used to suffer from back problems and then began to suffer from weakness in my right knee. My right foot started acting up and I had numbness in my toes. Went to a ankle & foot specialist, referred to by a good friend who is a neurologist. Diagnosis : flat feet ! They had finally caught up with me after 57 years. Physical therapy took care of all aches and pains and the purchase of orthotics. What a difference the therapy made. When my PMR flared up, I went to a Ortho Urgent Care and was told a tiny touch of arthritis in knees. Gave me Celebrex and it didn't do a thing. I asked my MD friend and he said go see my regular internist and there I was diagnosed w/ PMR. My job running a restaurant for 34 years meant I was on my feet a lot and my body finally told me so. So, your pains and spasms could be related other factors. Good luck.
dan38655 rocketman42
Posted
Getting back into walking and running was difficult however.
I had cramping in my shins and some kind of abdominal muscular stress that required I stop and sit for a while. I am finally back to running almost normally at three years in, but am not running with much intensity as my leg muscles fatigue quickly while running.
As far as spasms, I have had very infrequent though explosively intense spasms at the back of my skull and neck, occurring over these last three years, with pmr.
EileenH rocketman42
Posted
I have had it - it isn't directly PMR nor is it a spinal problem, it is most often musclular. In my case it was myofascial pain syndrome which is inflammation due to the prescence of cytokines (the same inflammatory substances that cause PMR) which cause knots of hardened spasmed muscle fibres in the body of large muscles. They lead to the muscles spasming to protect themselves from further pain.
In my case it caused such tightness across the lower back that I developed sacroiliacitis which if left can become excruciating and I was admitted to hospital for treatment using i.v. steroids for the inflammation and i.v. diazepam for the muscle spasm. Unfortunately I had an adverse reaction to the i.v. diazepam so was handed over to the pain clinic to finish the job - I was already in a lot less pain! They used manual mobilisation techniques and needling techniques which over a period of months got me pretty much pain free. The symptoms returned after some months - until I had a wisdom tooth removed which had been affecting my bite. I've had more than 2 years free of those problems but do have upper back muscle problems which are far less painful. Needling is dealing with them though;
paul45653 EileenH
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Anhaga paul45653
Posted
The needling I refer to, and I believe Eileen's experience is similar, is not acupuncture. The needles used are similar if not identical, but the principle and method behind the treatment is different. I have seen posts from PMR victims who say acupuncture has not helped PMR pain. I found the "dry needling" helped the "add-on" pain I had in my hip and I think has had more subtle benefits re my intermittent back pain, etc.
I have have received acupuncture in the past, and in that case several needles were inserted, nearly painlessly, and allowed to remain in the skin for a period of time. In dry needling the insertion can be accompanied by a certain amount of short-lived pain, but the needle is removed almost at once, and only one needle is in place at a time.
EileenH paul45653
Posted
No - as Anhaga says, not acupuncture. Dry needling/intramuscular stimulation (IMS) is done with a similar needle I think, solid, not hollow. Wet needling is done using a hypodermic syringe with a standard needle. As she says, the needle is inserted and removed almost immediately. And you don't sign up for a repeated series of sessions - one will achieve a fair bit over a period of weeks, the result isn't always immediate.
Acupuncture is based on meridians and energy lines. Needling and IMS are aimed at the area that is painful - which is mainly a large muscle group, so the pattern of insertions is relatively random.
amkoffee EileenH
Posted
I've seen you get frustrated with people before when they've repeatedly asked the same questions but this doesn't seem like one of those times. Are you just at the point where you are just tired of answering the same questions over and over even though it's from different people or is it that the responses from other people are upsing you? It matters to me because I don't want you to ever get so disgusted with this group that you quit. Because I think I speak for the rest of us and that we need you.
dea13 EileenH
Posted
Hi, is Needling and IMS the same thing? Thanks : I now only have 7 more days of my radiation treatment to do, all going well
Then I can really concentrate on this PMR nad Preds : Thanks for all the info EileenH :
margo25238 EileenH
Posted
Hi EileenH, quick summary, on pred for two years. off pred for two months. i have overall muscle aches and pains as some have described. Since the adrenal glands are involved, how much time does it take for them to 'wake up' and start making the adequate amount of cortisol my body needs to finally quiet down these complaints. I have been toughing it out and could use some encouragement.
dan38655 margo25238
Posted
I'm in a different time zone here, so will take a shot at your question. I believe that it is down around the 5-8mg dosage range that the body begins to regulate it's cortisol level in place of pred's own immunosuppressant effect. Body mass and perhaps one's sensitivity to the steroid determines exactly what dosage level is where the body begins regulating via cortisol.
If you are able to use zero prednisone, suffice to say that your body is already doing all that it is programmed to do at this stage of your illness to appropriately regulate cortisol, but your symptoms suggest that your autoimmune inflammatory condition is not yet fully dormant and so a continued pred regimen may still be helpful.
EileenH dea13
Posted
"is Needling and IMS the same thing?"
Dry needling and IMS are probably so similar as to be the same - I haven't been to a practitioner who does either by name so I can't tell you. Wet needling is not the same - as I explained above.
EileenH margo25238
Posted
Margo - how long is a piece of string? Some. probably most, people just reduce slowly enough and the adrenal function returns as they reduce. Even after you are totally off pred it can take up to a year for your body to get back to normal. But some people feel fine. As Dan says, your adrenal glands are producing most or all of what they need. I doubt that "normal" adrenal function will stop aches and pains. You have been unwell for a couple of years so aren't very fit and you are a couple of years older - and age comes with aches and pains!
Anhaga EileenH
Posted
dea13 rocketman42
Posted
OMG!! I have everything you just discribed and have done for months: Exact pain, and if I sit for a few minutes it helps and I can stand and walk again for 10 to 15 minutes. I have had some Acupuncture which did help, but had to stop for a few months due to other illness, but will be starting again soon, and hope it helps.
I know what you mean when you say they seize up, it can be very painful, and I have to sit then to relieve it. At the moment if I didn't use the fisiocrem which I rub in half hour before I go out, I would not be able to walk for long at all.
I to would like to know if this is PMR or the Preds playing with our muscles. I am on 26 mg of pred now, was on 40 mg. I was hoping as I tapered it would get better, so far NO!! The pain makes me feel sick sometimes if I push it and don't rest:
Wish youthe best :
dan38655 dea13
Posted
I haven't been on quite so high a dosage as even 26mg, but so far I think that I can attribute all of my discomforts to the pmr and not to the pred.
It was when I reduced too much that I felt ill and felt fatigued, and with all of the typical pmr pains plus a few strange ones like ear-ache (on whichever side I slept on) and intermittent itching in one ear or the other.
I hope that your condition allows you to reduce on schedule, but expect discomforts if you reduce too fast for your individual dosage requirements, which of course can very from week to week just as it varies from patient to patient.
EileenH dea13
Posted
amkoffee dan38655
Posted