Feels like muscles/tendons being pulling from my bones

Dear KimS,

I'm so sympathetic. The pain is dreadful but it is not the joints if it's PMR. It's in the muscles. The name means literally much muscle pain. However, a good rheumatologist will rule out the Rheumatoid factor, Lupus, Lyme Disease, etc. and will keep on checking for RA all through your illness. My rheumie checks out all my joints every time I see her (every 2 months currently but monthly earlier on). I have had it for over three years and I do believe it is starting to \"burn itself out.\" You do feel as if you've aged a lot, your gait may suffer (the PMR lurch) and you are tired. You have to pace yourself. Most people have to take Prednisone in order to have any quality of life and the side effects vary but once you lower the dose as your symptoms abate the side effects do go away. There is a lot of good information on this site so keep reading and take care.

Jill

Kim - yes, severe PMR pain is deep in the muscles and at it's worst it's very difficult to move the shoulders. Severe pain in the pelvic/hip area is what makes lying in bed very uncomfortable and sometimes impossible to turn over. At it's worst, it is difficult to walk, every step feeling like you are trudging through treacle. Do hope this helps and that you get a definitive diagnosis soon. Do keep in touch as there is a wealth of more information on this site, and very best wishes.

MrsO

Kim

Scroll down the subject headings and when you reach

PMR for the new people - read it and then visit the website for the British Society of Rheumatologists guidelines on PMR issued June 2009.

No, pmr is not a killer, it just destroys your quality of life and yes, prednisolone comes will all the side effects.

But they have been around since 1949 and are still the only thing, apart from Methotextrate and even then you have to have some pred at the start of Metho.

Its Hobson's Choice I am afraid.

Keep in touch.

Oh and there is the NMR Foundation located in Arizona, with support groups in some parts of the USA.

Hi Kim

Whether I have PMR or not I still don't know but everything you describe in your post is entirely consistent with my own condition and your description of the pain is spot on. I was also very fit before this struck and spent my life doing sport but my arms are now so weak that I am unable to do a single pressup from the kneeling position and I haven't had a decent nights sleep for the past 6 months.

How typical is the progress of my condition I can't say but if you read my previous posts you will see that over the past 6 months I have been on Preds for 2 weeks only and had one steroid injection. The rest of the time I have just had to manage the pain as best I could because my GP would not prescribe further steroids (even though I begged).

I still have a very, very, very long way to go to get back to normal, and I may regret saying this, but something has changed of late and I am now starting to believe that I can get through this without taking further steroids. I am still in constant pain but it now seems more bearable and I am currently taking no medication at all which would have been impossible just a few weeks ago.

I wouldn't necessarily recommend it but, if you have a high pain tolerance and don't want to take Preds, it may be worth living with the pain for a bit longer to see what happens. It won't be easy though.

Hope it helps.

Cheers

Bob

Bob

Most men, as usual there are exceptions, seem to get through pmr quicker than women.

I am convinced this is why they keep on saying 'PMR burns itself out after 2-3 years'.

The men in our support groupsor email contacts, have less pain, little or no side effects and seem to progress quickly.

That's life.

Hallo Kim and my sympathies for your pain.

What you describe I know very well--the feeling that your muscles are being torn from your bones. I experienced this ten years ago with my first bout of PMR. My arms hurt so much that, if I wanted to plug the kettle into the electric socket over the work-top, I had to support my arm with my other arm and it was still all I could do to achieve the connection.It took a while to be diagnosed ( first I was told Arthritis of the spine; my back was the only bit of me that did not hurt! ) but within 4 hours of being prescribed 30mgs of Prednislone ALL the pain was gone. Wonderful?. Well,not quite. There followed 3 years of gradual weaning during which I experienced many of the adverse effects of steroids.Papery skin, raised BP, disturbed sleep patterns. hair loss, mood swings but, at the end of it I had 5 symptom-free years so when it came back two years ago I was confident that I would come out on top again. How wrong I was. The pain this time was in my hip (L) my knee (R) which felt as though it was being turned inside out, my lower back, shoulders and neck. Seven weeks ago I was weaned off the Pred as I could not tolerate the adverse effects. Panic attacks, sleeplessnes, thundering pulse, and utter desperation and depression even when I had reduced to 5mgs. and it did not even eliminate the pain.

I now feel completely normal in myself but do have some degree of pain. It's very subjective; how can I compare my discomfort with that experienced by others? I do not know what my thresholds are but would guess possibly highish. Mornings are worst. Movement is painful but if I persist it does get better. I try to find a small task that I really want to achieve and, as long as I do not sit down for too long the muscles do gradually loosen. It does get tiring, though, and PM I often rest and even sleep for an hour or so. Then, later in the day my best time kicks in.

I have found that sleeping on my back helps with the shoulder pain which becomes grim when I wake after sleeping on my side. Long, hot showers are blissful.

My arms which were so painful in my first bout are, this time, completely unaffected.

Like you, I am adamant that I will not take steroids again. I have read that one of the effects of long-term Pred. use is tendon damage, another is muscle pain is. We are also warned that we must notify anyone treating us, even long into the future, that we were once treated with steroids. Why would that be? What does this stuff do to our bodies while it is alleviating our painful symptoms.

I do hope you feel better soon. This is a wonderful forum populated by many experienced fellow sufferers who support and encourage.

BettyE

I find a triangular pillow, which you see on adverts where people are propped up reading. Most useful. Hate to say this (advertising) - but Tesco's have them and the pillow cases at an extremely low price.

I used it when I had fibrositis and would not be without it. I even took the it into hospital with me when I had an operation on my foot, which meant, once I got out after a long ten days, that confined to bed for 6 weeks with a contraption for my leg and foot, which led to sleeping on my back. I blessed whoever had invented that pillow.

Mrs K.

You must be a thought reader. I came in here intending to ask if anyone found neck support pillows helpful and there was your message. Thank you.

Actually we do have one of these in the house which I shall ask to \"borrow\" and, if helpful, will go to Tesco's!. If the BBC are allowed product placements I think it's all right for us, don't you?

Has anyone tried the orthopaedic type support pillow? I cannot decide whether these would be too restrictive. Not a good idea as I find that the more peacefully I have slept, the stiffer ths morning muscles.

Another lovely day. Good luck everyone. BettyE

Hi KimS!

I don't know that I could subscribe to your description of the pain but I wanted to reply to MsJH's \"its not joints it's muscles\" comment.

One of the other manifestations of PMR may involve synovitis - inflammation of the synovial fluid in the joints, particularly some of the smaller joints in the fingers - and tenosynovitis where the tendon is involved. I had excruciating shooting pains in the end joints of three fingers. I also had similar pain deep in my hip joints, especially at night and after walking any distance. I also had what appeared to be RSI pain shooting from the elbows down towards my wrists on the outer aspect of my forearms when I tried to grip or turn anything - I couldn't even open a door if it had a doorknob!

I too have a medical work background so I know all about steroids - but they really are not necessarily as bad as they are painted. I accept them to get my life back. Spending the rest of my life unable to do anything in the house or for pleasure because of pain didn't really appeal. Quality of life is all as you will know.

Eileen

Hello Again from Kim S,

Thank you to all who responded to my post. I thought I had bookmarked this page, but apparently had not, so it took me awhile to find my way back here.

I really appreciate all the supportive responses.

I defnitely have a high pain tolerance, but this has been beyond tolerable at times. In spite of the pain, I am grateful that I have taken the approach that I have, thus far though. Today, I am happy to report that the last 3-days have been the best I've had in over 3-months.

My second Psionic Medicine analysis from yesterday is encouraging as we seem to have made progress. He had determined that glandular fever may have been the trigger for this illness in me. I completed the first treatment about 3-weeks ago. I am also grateful that my Psionic doctor in UK is clear that Psionic medicine works to seek and treat the cause, yet also makes clear that if I need conventional medicine (ie Prednisone, etc) while receiving the psionic remedies, it's not a problem. Indeed, it should help my system to respond even better.

So, I return to the Rheumatologist tomorrow to hear what my labwork and x-rays show. I will make my decision as to whether to knock back the inflammation with the Prednisone or continue the path I am on.

I know that God has a plan for me. I am a hard head for sure and I guess sometimes we have to get knocked to our knees, so to speak.

I will post again soon. Thank you all so much and God Bless You All for your support!!

Sincerely,

Kim S (USA)

Hello Kim, I hope that awful pain is easing a little, I don't think I've ever had it as bad as that, but it is all very subjective isn't it? I have to confirm that to me PMR is clearly in the muscles/tendons. This is particularly clear in my legs/ thighs.

But what is Psionic medicine? I've heard of homeopathic remedies (which are getting a bit of a bad press in the UK at the moment). I have found steroids OK and the side effects have been worth putting up with in order to get my life back, but I have been exploring complementary therapies in order to make it easier to reduce the dosage, help with muscular strength and general fitness. You will find on this site various herbal and food supllements recommended by different people, plus things like Tai Chi, Power plates etc. I am going to try Acupuncture in the next few weeks, just have to work out whether that or Acupressure is more appropriate. And, of course, one doesn't have to worry that anybody is talking about something because they get commission for selling it which can be one danger of the internet. I'm glad your doctor isn't against steroids. OK they're not great but PMR seems to be a question of working out what is best for YOUR body and one thing I've learned here is that we are all so different, hence the problems for doctors. Hope things work out for you soon, Green granny :lol:

Hi BettyE!

The reason we are told to tell anyone treating us in the future that we were once on longterm steroids is because if you have taken 20-30mg/day of steroids for more than a few weeks or a lower dose over a longer period, your adrenal glands stop producing cortisol because the feedback system in your body tells them they don't need to as there is a high enough level in the blood. Normally, these glands produce cortisol all the time, peaking their production between 2am and 8am, but at times also produce more in response to pain or other stress (for example cold, stressful situations in your life or infections).

Once you get the steroid dose down to a really low level and are able to stop the body starts to produce its own cortisol again but it takes about 9-12 months for them to get production back to normal - so if you are in a situation where your body needs more, like an illness or operation or an accident, the doctors (or an ambulance crew) need to know about the fact you used to take steroids so they can either keep a closer eye on you or give you a dose of cortisone to tide you over. If the adrenals don't respond you can end up in what is called an \"Addisonian crisis\" and anyone treating you wouldn't normally think about your symptoms being that without knowing your history as it's not very common.

It is possible this is what starts to happen when someone has a relapse of their PMR, they had something stressful happen and there wasn't enough cortisol to help them through it - but they go back to the doctor and start to take steroids again before they get very ill. As we get older our adrenal glands don't work as efficiently anyway and there is always the chance that they can respond to normal life but not a higher demand - so we need to tell people who are treating us who don't know our history.

In some countries there is a strong recommendation we should wear a Medi-bracelet or necklace which says just that - an ambulance crew will always look for something like that. The blue card is the same thing - but if it's in your purse and you were in an accident of some sort they might not find it as easily.

Hope this answers your question, Betty :-)

EileenH

Hello Eileen

Thank you for posting all your very informative information. However, something for you to ponder: my rheumatologist was adamant that steroids DO NOT shut down the adrenal glands from producing the body's own cortisol production completely, so I'm wondering if the jury is still out on this one?!!

MrsO

Hallo, again Eilleen, I am still here tho' you may well wonder when I have not responded to your mine of information re notifying all medics if we have ever been on steroids. I join in various threads and then forget to keep tabs on all of them!

Your explanation was so clear and answered another of my queries, i.e.how long before the adrenals take over again satisfactorily. I have been without steroids fro three months now so obviously should not expect to be \"perfect\" again, yet. Another thing that I wonder is if While we are on steroids, sometimes the adrenals DO click in. One of the main reasons I asked to be weaned was the intolerable feeling of agitation. I knew that if I did something really energetic it would help but it did get tiring! Now, after three months without I get spells of not unpleasant sleepiness which I indulge. Why not? I've been \"retired\" for twenty years but I prefer the days when I can tick things off my \"to do \" list.

The builders have finally gone. They were lovely but I guess they were stressful whatever I told myself. We don't relinquish our pictures of ourselves easily and, eldest child syndrom was part of mine.

Thanks again to you and everyone for all support and information. Betty[/list][/code][/quote]

Correction to my last post. I've only been off pred. for two month, not three, as I stated. Even longrt to wait, then. Sorry. Betty