polymyalgia rheumatica

After reading more on PMR or polymyalgia rheumatica, I think that I have found my culprit, hopefully.  I called this morning and spoke with the nurse at my PM docs office asking if they have any patients with this condition or if they had ever heard of it.  Nope, she had no idea what it was.  She checked and I was not scheduled for a follow-up appt with the doc from my rf procedure so I will see the doctor on April 27 for the follow-up & she is placing a note in my folder regarding PMR.  I do hope that the doctor is receptive to checking this out.

Dear Jag,

Good morning. *huggs* It is good to hear from you. I hope you pain levels are some what managable. How is your RF site doing? Is there still tenderness and swelling? Goodness, I sure hope it works at helping to relieve your pain.

I never heard of the condition you mentioned. After reading about it thou. It makes alot of sense that it could very well be the culprit of many of your symptoms. Though of course I don't wish that you were bogged down with another diagnosis..... it sure would help to explain alot of the problems. After learning about it, it looks like during a flare, it is treated with NSAIDs and Prednisone (sp?). Prednisone does alot of damage, but if it would help you that would be fantastic.

It says here ~~> "Patients who have polymyalgia rheumatica may also have temporal arteritis, a potentially dangerous inflammation of blood vessels in the face."

Sounds like it could cause all sorts of problems if left untreated. I hope your doctor truly hears your cocerns and checks it out!

I hope you can find a few moments to relax today. I know you have been under a tremendous amont of pain lately.

*warm huggs*
dani

Hello Jag! I have to applaud you on your research! It looks like you have done your homework. Let us know what your DR says about it. Good Stuff!

I hope you get to feeling better.

SE

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DDD (Degenerative Disk Disease) S1-L4-L5, Heart Attack 2002, Angioplasty to clear blocked Artery and to implant Stent. Six Epidurals, Disocgram, Melanoma Cancer 07, Lumbar Fusion March of 2010, Four cortisone injections Tendinitis in Elbow.

White Beard, I was thinking about you with this. I remember you saying that your symptoms were alot like mine and you have alot of muscle spasm issues. I can tell my joint problems but this muscle thing and overall body aches is what got me checking into this. Not sure if you ever have so called flairs with flu-like symptoms though.

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---Jag---

Jag
I just got on here and read your thread, I am going to check this out, as allot of what you have described does apply to me too! Who knows maybe you are on to something! I seen my neurologist a few days ago, and as soon as he walked in the door he already had his mind made up that it was all the bad disk that was causing all my problems! Even though all the other Doctors and even the surgeons do not think so! I had to argue with him to get him to do an MRI of my brain, I have that done the 21st. I talked to my PM about it this morning when I went to see him for my refills, and he said he was sorry about the neurologist attitude, and that he did not agree at all with it! He said to wait till after the MRI and the results, and then if need be he would try sending me to somebody else that is willing to try and find out what is going on!

Anyway Jag Thanks for thinking of me, on this, I appreciate it and I am going to do some research about this, if I find anything out I will let you know!

Thanks Jag!

White Beard

Hey Jag ,just wanted to offer my support to you and let you know I'm pulling for you , I hope you get the info you want and that it all works out for you , stay strong  friend !!!  Mikel

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HIV+ also Hep c , need hip replacement surgery on hold because of unknown but cellulitus-like ailment  .most pain from hip condition and cellulitus-like ailment .hands numb may have carpal tunnel syndrome now . Great frustration because doctors unable to diagnos ailment              .Medecines -    ,viracept,truvada, l Indomethacin  '                                                                                                                         

Dani, Michael, Mikel, & Loretta thanks for the encouraging words. Actually I never would have heard of this if one of our members, who is no longer with us, hadn't mentioned it. I normally check out different ailments in looking for that never ending search for pain relief. Before when I'd have the flu-like symptoms for no reason the fever was always low grade but this time when it went up to 102 and then broke within 12 hrs it's getting a little scarier. That is one of the symptoms of temporal arteritis that Dani was mentioning.

White Beard, I hope you can find an answer to your issues soon. With me I get so stiff in bed from being in on position while sleeping that turning over makes me cry out and say ouch, I finally just get up because I am having to move every half hour or so and it's just not worth it to stay there any longer. When I do get up it feels like everything has seized up, even my feet & hands are stiff and sore. After an hour or so I start limbering up and am able to get some things done around the house or get some shopping done, then it is time to rest. I walk hunched over for awhile everytime I sit down or lie down to rest during the day so it's a lose lose situation. I know I need to rest but getting back up is a challenge and by afternoon my body is shot. By afternoon the all over aches start in again and don't go away until I go to sleep to be woken up again from being in one position. Some days are better than others but I think that mixed with the osteoarthritis and facet syndrome the weather can play a big part in my pain levels.

The chills, low grade fever & flu-like symptoms don't show up too often but when they do come around it's very fast coming. One time it lasted for 5 days but normally they are shorter in duration.

White Beard, please do let me know if you find out anything. I truely hope you all find pain relief soon!

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---Jag---

Jag
Thanks for the concern. You know, I have exactly what you are describing, and the funny (wierd or strange) thing is that the only thing that really helps me with this is Prednisone when ever my Ulcertive Colitis flares up and they put me on high dose Prednisone ( 80 mg/day) allot of my joint and achiness and pain goes away! I have talked with doctors about that for years and they have all said that, that is strange and that maybe I have an inflamation problem?????. Now that does not cover all of my problems that I have, but it does seem to be a strange coincidence.??????

I do have a question for you Jag do you also have problems with temperature regulation? I often go from having the chills to being hot and wringing wet with the sweats, and then back to being cold again, and this is just sitting in a room with the same temp the whole time! I have heard som jokes about me going into menopause, but this has been goning on for many many, many years!! I sleep in a sitting or Fowlers position, and I wake up many many times a night, all night long and use my remote controll to change my bed position, usually just a little so I can be comfortable, and try to ease the pain and stiffness. I get so stiff and am hurting so bad it actually wakes me up!! In the morning my hands are locked in a fist like position and it hurts to try and get them open! I can barely move getting out of bed! As I said this explains allot of what I have, not every thing but allot of it! I get so ( I can not think of the correct word that I want to us) But I sometimes just want to quit going to Doctors, and just say to heck with it! Nobody seems to want to find out what is going on, and then I find that some times I start questioning myself! Is it real what I am feeling? And how can you make someone understand the pain??? I guess I don't have to worry about that any more!

White Beard

Jag
Thank-You so much for that link, I have been reading it, and I find it extremely interesting and so much of it applies. You know it is so frustration, my PCP and my PM Doc have all been after me to get a neurologist get back under the care of one, so I and I had to argue just to get him to do some test, the moment I met him he had already had his mind made up that it wa all in the disk in my back. Yet all the other Doctors don't agree. And here I am yet again stuck in the middle with no answers, and having to fight just to try and get him to work for me and try to come up with a resolution and some relief! You know that Prednisone is a real two edged sword with me, on one hand it is really a miracle medication, and helps me so much, and if the dose is high enough the relief of all my aches and pains in my joints and that is very rapid indeed. But on the other hand the side affects, are just as rapid and are terrible, it affects me emotionally ( a very comon side affect with steroids) I will cry at the drop of a hat (so to speak) and for me it isvery difficult to sleep and I am alway hungry while taking it, which leads to weight gain that I do not need! ( need I say more?) Anyway I will read through it all Jag and let you know what I think. How about you? Do you have problems with spasms in your hands or feet? I had to build a frame like thing to keep the sheets and covers from touching my feet and toes as that causes me a great deal of pain and triggers spasms in my feet! I also have drop foot on my left, I suspect that is caused by the herniated disk at L4/5????? Anyway sleeping is no fun and to be honest about it I do not look forward to going to bed. It is bad enough to have to donn a mask and hook up to a PAP machine with O2 all night long, and then add to it, to be woken up constantly with pain and having to reposition myself, well is it any wonder, a person does not want to go to sleep! I dread it, maybe that is why I stay up so late, going to bed at one or two AM is not unusual for me!

I do wish you well Jag, YES!! .. it does seem like life is just an endless search for answers in trying to find relief. I do hope that you find those answers and you get the relief you seek!

Good Luck to you Jag

White Beard

Jag & White Beard,
I'm glad you're helping eachother find answers. I think most of us know if we don't advocate for ourselves no one is going to do it for us (well, at least not in most cases).

White Beard you raise an interesting point about avoiding bedtime. My sleep schedule is all over the place, too, and that's food for thought to think I might be avoiding a final "bedtime" (I tend to lie on the bed and take these extended naps which really screws things up). I don't want to sidetrack this thread, though, but had to comment that was an interesting insight.

PaLady

 

Age

The incidence increases with advancing age. Polymyalgia rheumatica rarely affects persons younger than 50 years. The median age at diagnosis is 72 years.

  from emedicine.medscape.com

 

 

 

Straydog, I know alot of the websites state that this is more or less a disease of the elderly but as Faith has pointed out this is not normally the case. In the forum I posted above for WB, there are lots & lots of people my age with this plus some as young as 30's. I do appreciate the warnings about long term steroid use also, the side effects are very scary to say the least but having daily chronic unknown pain is scarier. From what I've read, the pain relief from the steroids is amazing and the goal is to wean off of them as soon as possible with your doctors help. One thing that is brought up in the PMR forum is the fact that there is so little information on the web regarding this disease and the fact that alot of it doesn't really apply.

So far the rf doesn't seem to be making much difference. I woke up this morning with very stiff sore lower back, hip & right butt cheek pain. Tomorrow will be the one week mark so it is still too early to tell but I'm still hoping. I had such good results from the nerve block that I'm not giving up on this yet. What is getting me more worried is the fact that I can't seem to walk as far as I used to. Walking was always the one thing that didn't cause me pain but anymore it is getting to be more of a challenge and I don't want to lose the one thing that gives me some exercise.

White Beard, at times the ball of my hand, the round area under the thumb gets sore like a spasm but mostly my feet and hands just feel stiff & achy. Looks like we are in the same boat here though. We both have so many issues with our spines that the doctors want to blame everything going on with this. The area under my cervical fusion feels like a wooden cross has been placed in it and I am swollen with muscle spasms all along it. My neck, shoulders, lower back & hips ache constantly, then in the mornings, nights & afternoons it moves into my arms, hands, upper thighs and feet join in. I only feel somewhat normal from 9am til 2pm. I, like you, have muscle spasms going on throughout my back that no muscle relaxer or pain med touches. I do the hot baths and heat but nothing helps.

PaLady, as far as the sleep thing, I agree with you wholeheartedly. It seems that most of us with chronic pain avoid bed because it's not the restful place it should be. If I wasn't married I'm sure my sleep habits would be alot worse. I go to bed with him but am usually up by 2-3am because I just can't take the pain anymore and have to get up and move around.

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---Jag---

Hello again,

Jag, have you ever seen a rheumy and been properly tested for RA? Might be something worth checking into, something else is let me think I may not have the full name here, Connective Tissue Disease, I believe is the name. A rheumy can test a person for this too. I know all too well the lengths we go through to get pain relief. Steroids can be a wonder drug for some and they kept me working for many, many years while dealing with CP. I had no clue how destructive or bad they were for a person long term. My neurologist just kept me loaded up and as long as I took them I could do just about anything I wanted. When I was strokeline and was admitted to the hospital for ten days through ER I found out real quick all the info my dr failed to tell me about them. Lets all hope this is not the case with you and you don't have this mess, that would be the best case scenario.

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crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & psoriasis and psoratic arthritis. Several other health issues just not enough room to list it all. Too many surgeries to list and too many medications to list. Currently on 17 different daily medications. Intrathecal pain pump implanted June 05.

Jag (& WhiteBeard, too!),
This may not be relevant at all, because RA is so different from OA but I know I've had severe problems with my hands over the years and had carpal tunnel surgery on both, but also had trigger fingers and the trigger fingers were helped immensely by a series of cortisone injections. I don't know if seeing a hand specialist would help. Just a thought. It took the full 3 injections, spaced about 6 months apart (that's when they would wear off) to get permanent relief. Oh, how I wish the same would have applied to all the injections in my spine!

Jag - I wish the sleeping issue for me was about being uncomfortable in my bed. In a way, it's the place where I am most comfortable on my tempurpedic, and that's creating problems because I want to go in an take a "brief" nap every time I'm feeling out of sorts from one thing or another and those "brief naps" turn into several hours and I feel like my life is a series of naps. LOL Thing is the bed is so comfortable I don't want to get out because I know things go downhill from there.

It's always something, right?

PaLady

Straydog, I have been to two different rheumatologist who both dx'd me with fibromyalgia. I don't have 11 of the 18 so called tender spots but do have some of the symptoms. I've also had x-rays and blood tests ran twice for ra, lupus, lyme and the other autoimmune diseases. I don't remember anymore but some of my numbers were off but they didn't seem concerned by this but I am going to ask my pm doctor to run some blood work again, it has been a couple years since the last ones were done and I feel I have become more knowledgeable since then to understand the numbers. None of the standard fibro drugs helped me, I also tried Cymbalta, but this caused some side effects that I couldn't live with.

I know you are worried about me and that is very kind of you and I will not go into any treatment without knowing all the risks & trying in any way I can to keep myself safe. The PMR is something I want to check out closer, maybe that isn't even my issue but I would like to at least be tested for it. From looking at all the connective disease symptoms I don't really thing I fall into this group but I will bring this up with my doctor.

PA, my hands are the least of my worries actually, they usually come out of their stiff mode after about a half hour after waking. My biggest issues are my lower back, hips, across the shoulders & my upper thighs are getting sore and weak which is making it hard to stoop down to pick things up. I know what you mean about lying on the bed during the day. It is my most comfortable spot to rest during the day too. I will take a bt med then lay down to rest and the next thing I know, I'm napping. Don't like to nap too much because that just throws my whole sleep thing off worse.

Retired, I used Ultram in the past and it did help for about a year, until my pain levels exceeded it's pain relieving qualities. It is a good drug and didn't give me any side effects that I remember. I think Ultracet was the timed release form but there was no generic for this and it was rather expensive. Thanks for the well wishes!

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---Jag---

Hi Jag,

The Ultracet is the combination of tramadol and tylenol and is a standard release (4 hour) med. I actually take two together quite often during the middle of the night. It's generic now and I still use it as a BT med with my Dilaudid. I still find the Ultracet to be more effective than the Ultram, but many people can't take the tylenol. It's certainly not a perfect med, but it helps me quite a bit with the Fibro and seems to make the Dilaudid more effective too.

RM

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DDD, CPS, TLIF L5-S1 2009, FIBRO, VERTIGO, MIGRAINES, GERD, SLEEP DISORDER, NISSEN FUNDOPLICATION (failed), DEPRESSION, EXTREME ANXIETY DISORDER, OCPD, PTSD, CHRONIC MUSCLE SPASMS, HGH DEFICIENCY, VIT D DEFICIENCY, CARPLE TUNNEL SYNDROME, BLOOD SUGAR ISSUES, THYROID CYSTS, AND SERIOUS MOOD SWINGS :) 

I understand now with the ultracet.  I can see how this would help you.  None of my meds contain tylenol but generally I still take some every day.  It seems to help with the achiness I experience in the mornings & afternoons.  I do make sure I don't over due the tylenol though since it can be hard on the kidneys.  Weird how we're all so different.  Some people swear by ibuprophen but it does nothing for me but the aceteminophen does.  When I was taking tramadol, I normally took two at a time.  I think 3 times a day if I remember right.

Jag, one thing about it, is the lab testing for dxing the PMR are all standard type labs, nothing out the ordinary making it an easy problem to dx. The good thing about PMR is it being a temporary condition. Its a shame we can't say that about CP. You may want to print the stuff off from the Mayo site and let your dr read about it, at least he could look at the info and order the right labs if he feels it should be investigated.

Its been so long I could no remember if you had been to a rheumy thats why I threw that one out there. You are so right on how meds affect each of us. When I broke my arm last Oct the day it happened I was in horrible pain. When you break a bone your entire body gets this awful, a sick feeling, I knew it was broke before going to ER, its a feeling you don't forget if you have broken bones before. I was offered pain meds in ER but declined since I had my own at home. But, the Dilaudid I have for BT pain did nothing for the arm pain except contribute to more nausea. I may have said this before I am not sure. My neighbor is an RN and he came over to get some movies and then saw me in the sling and all. We got to talking and I was telling him how my pain meds were not touching the pain. he said well, people don't believe this but your pain meds have nothing for inflammation in them and right now you have a lot of inflammation going on in that arm. He went home and came back with a huge bottle of Ibuprophen and said take 4 at a time, that will make it script strength and I did. I was on it oh 4-5 days and then nothing but talk about helping my pain, I was shocked. I had been told not to take it by my gi cause of the crohns but at that point I didn't care, lol. We are all just so different with meds.

Hopefully your dr can get to the bottom of whats going on with you. Its frustrating when you don't feel good. Take care.

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crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & psoriasis and psoratic arthritis. Several other health issues just not enough room to list it all. Too many surgeries to list and too many medications to list. Currently on 17 different daily medications. Intrathecal pain pump implanted June 05.

Thanks, Straydog, for your help & understanding. This post is starting to get rather long so until I find something conclusive I will let this one stop.

White Beard, please let me know if you find out anything at all regarding this issue. From what I've read on many websites and forums, the blood tests are not always positive for this condition. But getting quick results from the steroids is.

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---Jag---