Feels like muscles/tendons being pulling from my bones

Hi Kim,

I would be really interested to know how you are getting on and if you are still managing without steroids? I developed PMR 6 months ago, and have been managing on ibuprofen and complementary therapies/supplements as I am reluctant to take steroids especially as i have some osteoporosis already. But I am struggling with the pain and muscle weakness.

Best wishes, Enid

Hi there,

Sorry to hear of you plight. From my experiance you are describing PMR. I was diagnosed last summer but the pain you describing sounds exactly as mine was. I had a blood test and it showed up as inflamation then I was prescribed predneselone 30mg per day, which worked like a miracle within a couple of days. reducing to 10mg per day after 6 months, now I am waiting to se a rheumatologist with the threat of one of the other 2 drugs you mentioned.

I am in contact with several other sufferers here in the UK through a group on Facebook (search on Polymyalgia Rheumatica) and national PMR charity that was registered a few weeks ago. There is a web site set up by a lady called Jean Miller. We are trying to raise awareness, to get acurate information, fund research and most impotantly give support and comfort to other sufferers.

All the best

To kim,

Omg! That's exactly how I feel like tendons are being stretched tight, and it feels deep in my bones exstreamly painful also pins and needles up and down my arms my neak hurts too. Also I had an Mri on my lower back and I have spinal stenosis of the lumbar. but the unbelievable pain is constant in my hands and arms my legs I lower back this is so much I don't know what to do I don't know anyone who experience is this but what you describe was like right on the money as far as how I feel about the pain in my hands in arms and shoulder I want to thank you know for posting this because its scary I am I feel like I'm going to lose my ability to walk because I have to concentrate so hard you know yes I am diabetic they want to say its diabetic neuropathy neuropathy but I don't buy it I think something seriously is going wrong I will be seeing a neurosurgeon this week for my lower lumbar I'm going to try and get him to do an upper MRI for a total MRI of my spine. Please feel free to reply to me at my email address. Oh shoot I'm going to have to stop my hands are hurting so bad wish you a lot of luck I hope I find out what is going on.

sending lots of love and wishes all the way from California USA

Elizabeth - the post you are replying to is from 2010 - in the meantime this site has been overhauled and it caused a lot of problems getting onto the forum and posting for nearly a year. Many former participants have left as a result so I don't know if Kim will see this.

Not being "in" to neurology I don't know if a spinal stenosis in the lower back is likely to be matched by something similar further up so I think what you are saying re the neurosurgeon is a good idea.

However - if you have lower back problems that may have also caused muscular spasms all over your back and that can also pinch nerves. A good physio could tell you the state of your back muscles.

Good luck with your neuro appointment.

Eileen

Kim just to say my pain was entirely consistent with yours. I too waited 3 months to get treatment after being told it was everything but PMR. I was afraid of steroids and the ladies here really helped me.

The pain was relieved and I see them as nothing short of a miracle, but one with side effects which if I weigh them up to the pain...I think taking them is the best option, for me anyway.

I'm not sure what Kim did in the end, she never came back and this must have been one of the first threads I commented on! Doesn't time fly when you're enjoying yourself!

However - her fear of that first pred injection her rheumy offered was a shame. Had she had one and the symptoms had improved dramatically it would have been a hint of what was wrong. PMR is often diagnosed after someone has a pred/cortisone injection for a joint problem and suddenly a lot of other aches and pains improve too - ah! PMR!

PMR can show up with joint pains - tendonitis and synovitis - as well as muscle pain/stiffness. They take quite a bit longer to respond to the PMR pred dose - but it happens eventually. Only PMR responds in this amazing way to a low-ish dose of pred where the symptoms improve by 70-80% within less than a week and then return just as quickly if you stop the pred. Other things might improve slightly but not like PMR. My response was 6 hours - from barely able to do the stairs to almost normal! The joints still hurt - but not as much. Tendonitis and synovitis can be searing burning pain and the longer it takes to diagnosis the worse that pain can become.

Basically you have a choice with PMR: accept pred and have an improved quality of life or refuse it and continue to suffer. You become immobile and so put on weight as a result, putting you at risk of osteoporosis, diabetes and high BP and cholesterol. That can happen with steroids too, though not always - but at least you aren't as immobile and you don't hurt as much!

Oh wow, I did not notice. :-)

Kim, I know of your reluctance to Predinsone but the PMR diagnosis is made because of a DRAMATIC reduction of symptoms with a small does (like for me 20mg)  Take the predinsone to get the right diagnosis and then you will fight to get your old self back...I also had a PMR Rheum denier...every thing was pre RA. I suggest get the diagnosis and your life back and then proceed from there...I waited over a year having blood tests almost every week.  Best of Luck DOUG

I would like to propose that while these symptoms may have different names depending on the type of doctor doing the diagnoses, has anyone developed these symptoms after exposures to certain things?  I carried a dx of fibromialgia for years.  It was mild (I realize now.)  After a series of exposures and physical reactions, I've reached the point to where I'm having these.  First, I was exposed to mold in my bed.  Secondly, I went through major trauma with my son and his health.  Third, I was exposed to pesticides sprayed in my vicinity and became chemically sensitive.  And lastly, I was in a major car accident that totaled my vehicle.  Close to 60 mph hit a tractor trailer blocking the entire highway, no lights, no reflectors.  It took about 6 months and a cold snap to set this horrific thing off.  And I think to myself, yeah, this is a cumulative thing; and I'm suffering mainly because of an extremely toxic and dangerous environment.  I've found many different diagnoses in the fields of rhumatology, as well as orthopedics, neurology, etc.  No one should have to suffer this; or the side effects and secondary illnesses caused by steroids or other immune-destroying drugs.  There has to be a better way.  There just has to.

Oh, and one more thing.  I also found a condition in which the humoral bone in the shoulder crumbles and causes similar symptoms.  It basically cuts of blood flow and causes necrosis of the bone.  My shoulder has cumulatively felt like it's crumbling under my weight when I'm trying to sleep.  It is treatable.  It's called Osteonecrosis of the Humoral head.  It's also called avascular necrosis.  It can be from an injury, or it can be caused my some kinds of immune issues.  Apparently an MRI can reveal it.  I hope this helps.  I just don't want to live in this pain anymore!

Hi Kim S I've also had pains in my joints & up my arms but for some reason thë pain in my right arm has been hell for over a month Ive also had pain in my lower legs & feet but that appears to of been thë result of amlopidine for hypertension ! Also have hypothyroidism since childhood thë hypertension started in 2003 then last year after months of on & of coughing which became chronic with repeated infections I by x-ray & spirometry was diagnosed with copd that was in June 2014 Ive had repeated infections of thë respiratory tract Ive also been on prednisolone along with ciprofloxacin Id gone from thë elementary stage to stage 2 in a short time. To cut a long story short I was on prednisolon & ciprofloxacin in thë last two weeks of March this year I complained of several pain on standing with my left leg because of thë swelling & red burning rash I had to both legs caused by amlopidine but thë bone in my lower calf of my left leg felt like it was going to snap. So the doc sent me for a bone density blood test just only after 5 days of finishing both thë prednisolon & ciprofloxacin well its no surprise then that my blood test came back normal because taking anti inflammatory meds would surely if I'm right would of cleared up any swelling & inflammation. 2 Fridays gone I had an x-ray on my right arm that causes me several pain in thë bone of my elbow & spreads up & down my arm its there every day & comes & goes in waves but when it strikes it hurts like mad ghe x-ray showed nothing I can't understand thë doc says theres no inflammation he checked my arm & said there could be some inflammation but gave me a sheet of paper with exercises to do which Ive tried several times it made it worse! I don't know what to do I swear thë docs must think I'm mad & its all in The mind I'm from the UK I notice your from the USA what do you think of this matter also I wish you Well!:-)

Kim,

I totally understand what you are going through. I am.37 years old and was diagnosed with RA about five years ago and have been on infusions as well as pills as well as shots and mind you I had pain but nothing like what happened a year ago. About a year ago I started developing intense left leg pain then it moved to my right leg and finally got to the point that I can barely walk and I now rely on a walker and wheelchair. Well am supposed. I try not too. I want to use my legs til I can't use them. Over the last two weeks the pain has increased and I feel as though my muscles are being ripped off piece by piece. It hurts so bad. The problem with me is that I weigh 460 pounds so they have a hard time fitting me into a machine to test me. So I'm stuck. They just keep drugging me up to manage the pain but the meds don't seem to be working.

Oh Kim I so feel for you. I've been going through the same thing for a couple years now. I find all I can do it stretch to try to relieve the all over my body pain. I'm in tears now it hurts so bad and the doctors around here just throw diagnoses out like the garbage. Something is wrong with me yet the Drs can't take it and leave the practice ( been threw 5 in 2 years ) they all left the practice. It got to the point that all my meds got screwed up cause all of the new Drs I was forced to get after mine left only had 20 mins of there time and with all my health issues. That wasn't even close to enough time to explain everything. I got ptsd over the healthcare in mass and almost died twice but refused to go to the Drs after so much neglect. Still do. We're actually selling our home in hopes to find better health care somewhere else but yes. I feel like all my tendons are so so so tight that they will break. It's aweful. And to no help from a dr. So sad for us going through what we are. I'm trying to learn hollistic meds so I never have to rely on a dr again.