Post

Finally A Diagnosis

I originally consulted a chiropractor because I had a pinched nerve in my neck. Next, I began to experience severe pain in both upper arms as well as both thighs. The chiropractor referred me to a neurologist who did an MRI, which indicated damage in my shoulder, disk problems, carpal tunnel problems, etc. He referred me to an orthopedist who suggested that I stop the statins which were controlling my cholesterol. Next, I consulted my internist to see what I should do to replace the statins, since I have a family history of high cholesterol. He diagnosed me problem within minutes: PMR.

Moral of the story: consult your internist first. I am now on Prednisone, not my drug of joice, but I am feeling much better.
emlyonshsd emlyonshsd 61-65 7 Responses Feb 6, 2011

Your Response

Cancel

Has been interesting to read what others have to say about their experience with PMR. I was stricken with it in 1998 and still have it. It was horrible before I was diagnosed. I started out with 30 mg Prednisone and gradually came down to 5 mg and function just fine, except for an occasional flair up of pain. I just increase to 10 mg for a while. The literature on PMR states it may go away in a few years. Well, it has been 14 years and I am still waiting. I am 74 now and otherwise in excellent health. But I have been considering getting a shingles vaccination. Now after reading the experience others have had, that the vaccine seemed to cause PMR, it am very reluctant to get the shot. If a person already has PMR, will it create a much worse problem??

After several months of severe pain in the upper arms and hips last fall 2011, I was ready to call it quiits. My GP prescribed a strong pain pill which left me hovering over a trash can for 24 hrs. I scheduled an appt to see a rheumatologist who immmediately told me she suspected PMR and ordered a blood draw. The inflammation confirmed her suspicion. She put me on 10g prednisone 1x day. The pain was miraculously gone in a few days. She kept me on 10 mg for 2 months then began lowering the dosage 1 mg. less each month. After 5 months (I was down to 5 mg/day) it flared up again and now I'm back on 10 mg and praying it'll go away and forever. I've felt like I had 10 penny nails enbedded in my muscles. I've needed help dressing especiallly putting on a coat or sweater, doing laundry, everything. I feel like a hermit because I don't have energy or want to do anything as well as an invalid. No one seems to have heard of this and I have felt all alone until I read the chat site. I'm so glad to have a chance to share this and pray for a rapid recovery for all of you.

I was diagnosed with PMR after 3 weekly episodes of debilitating pain and difficulty moving, standing sitting, etc. in June 2011, though I had an episode of that in Oct. 2010 as well. When I got back the results of the sed. rate I went online and realized what I had.The prednisone makes me feel great, though I had a flare up in Dec. 2012 and had had to increase it from 8 mg to 40, 30, and nmow an at 20 'til I see my doc in Feb. I had a shingles vaccine in Aug. 2011 without any problems. As a retired RN I'm a big believer in vaccines.Six days before the flare up I did have IV Reclast for osteoporosis and spent 3 days in bed with aching joints and muscles but felt fine for 2 days until the PMR came back worse than ever before.Interesting to see other people mention hand pain as this isn't mentioned in literature I've seen but is one of my Major symptoms.

Hi ptdeasy, it is interesting that you had 2 episodes so far apart. Good to have a diagnosis though. Note other people's stories on reducing the prednisone carefully most say slowly (I do too). I'd love to hear from you on my website www.polymyalgiarheumaticasupport.com. It would be good to know how you are progressing. Well, I hope. pmrdianne.

I have the hand pain also. Good Lord, it is so unnerving!

It does seem very difficult to diagnose, perhaps because it is not common. My diagnosis was quick because I already had Temporal Arteritis. 50% of people with TA get PMR. Plus I had a very attentive GP. I hear a lot about some illness (in this case vaccine) triggering it and sometimes I think we know our own bodies best. Frustrating that it comes and goes for some over a number of years. Just have to hang in there and try to remain positive. See my story "Me too" on this site. All the best, Dianne

I got the shingles vaccine when i turned 60,& 5 days later began to have body aches which quickly limited my ability to dress myself, hold a purse,etc.Investigation showed PMR. I was certain the vaccine caused it& told my MD.I reported it to the CDC & the manufactuer:no interest. I had to take a leave from work(I am an RN),took prednisone& ibuprofen, lost my sense of welll-being,gained weight,spent countless hours wasted lying in bed. It is just over 2 years now since I got the vaccine. I believe I am now back to where I was prior to the shot. I feel great....but it was a miserable, & needless experience.I still believe-I KNOW-I got it as an overreaction of my immune system to the shingles vaccine.

I am also an RN and work in hospital around children. The hospital made it mandatory for us to get the new DPT booster shot because of recent outbreaks of new pertussis. I developed PMR out of the blue also and have been suffering for a few years now. I have done some research and I believe it was the "aluminium" in the vaccine that is actually a catalyst that makes the vaccine work that causes this. It turns on your immunity system and people that are susectable to autoimmune diseases it does not turn off. You can google and see if aluminium was in your shingles vaccine. I can empathize with all your pain and suffering you are going through. I am 47 years old. I will never get any vaccine again as long as I live that is for sure.

Hi bhmitche, sounds very likely to me! Two other comments on shingles vaccine on this site alone! They talk all the time about the immune system in relation to PMR. Must be more out there. Would be good to build a case! Even when the pain is not too bad, that loss of well-being is very frustrating especially when it goes on for years. So glad you are back to normal. I hope you stay that way. I'd really like your comment re shingles on my website, www.polymyalgiarheumaticasupport.com. Maybe it will bring others out of the woodwork.

Hi punkymunky064 (what a cute name!). I didn't know what DPT was so just googled it. I found a website but it was so long and difficult to read I didn't even try. You might though being an RN.
http://www.cdc.gov/mmwr/preview/mmwrhtml/00046738.htm
You were young to get PMR, maybe another indication of a reaction. I do believe in vaccines because some of the illnesses we have now prevent are diabolical, but maybe some people have a bad reaction. I see you just came on yesterday. After a few years, how are you coping? I'd be interested in your story if you would like to put it on my website, www.polymyalgiarheumaticasupport.com. Just 2 weeks old so a work in progress. All the best punkymonky from pmrdianne (how ordinary in comparison with yours!).

I was dx, with PMR in Oct. of this year. I had a shingles vaccination in the summer and i came down with shingles .After they went away on the outside is when I came down with this. I was having some trouble with getting up and down and low energy and strength,but one morn. I woke up and was unable to do much but bl<x>ink my eyes. I had severe pain in all my joints especially the shoulders, elbows, hands,back,hips knees and feet. It feels like chipped glass between the joints. The Dr. put me on prednisone, neurontin,muscle relaxers and pain medication. This is the most humbling thing I've ever had. I would like to know any other tx .Down in Corrigan

HI Betty, I suppose the dx is diagnosed but what is tx I wonder. You sound like you have had a really bad time. Interesting re shingles vaccine (did you see the other person who said that too?) I hope you are better or at least on the way. One thing about a support site, you hear others who are worse than you! See "Me Too" on this site or I'd like to hear how you are on my site, www.polymyalgiarheumaticasupport.com. Best wishes, pmrdianne

I was diagnosed with Polymyalgia Rheumatic nearly a year ago. My inflammation level was over the top, I was miserable and just wanted to give up and die. After nearly a year on prednisone and then lowering it as my inflammation lowered I did feel somewhat better and once I was down to 1 mg the inflammation is on the rise again and now I am nearly back where I started. I don't have so much of a problem with my joints, other than my hands but the large muscles in my legs, especially the upper back portion of my legs. I rub Bio Freeze on them several times a day and it helps a bit. I have problems sleeping being that I'm on the steroids and it has affected to appetite to a certain degree. I'm told this can last up to 3 years. Isn't that great? I sometimes wonder if this is what I really have but then I guess blood tests don't lie. It took several months of every test imaginable before I was diagnosed. I am truly sorry for anyone who has to suffer with this "condition". It's really nasty. Oh, also, I have such burning in my fingers and toes at times that I could just scream but my doctor tells me that is my body trying to get rid of something that doesn't belong there. I hope and pray he knows what he's talking about. If anyone out there has symptoms similar to mine I sure would appreciate talking with you. It might help to share this with someone who knows what it's like.

Hi Seaoats1, it is a long time since you posted. I hope you are still out there. My muscles in my legs are the worst too, but also arms. My sleeping is better now thank goodness now that the prednisone dose is lower. I've had it for 2-1/2 yrs and hope it is drawing to a close. I didn't want to believe I had Temporal Arteritis but was easily convinced I had PMR 6 mos later because they go together. Yes, my hands and feet burn too- just part of it I think. See my story on "Me Too" on this site and in more detail on my site, www.polymyalgiarheumaticasupport.com. I'd be interested in your comment on there as to how you are going now. All the best, pmrdianne