Thanks for letting me rant!!! I feel a little better.
I feel so bad that you are having to go through this but I think it is time you looked for a different Dr. Having gone through 2 years of no diagnosis and at the end her having a fit telling me she has spent all this time training to be a Dr. and how dare I question her. If I had my whits about me I should have asked her why she didn't know what she was doing then but we always think of the good things too late. It is a shock when they treat you this way making you feel like you are crazy. The last time I saw her she was insisting that my problem was weather related. Dingbat!! I changed Drs. and from there was sent to an internist and dxd the same day with polymyalgia. I hope you change Drs. and get a proper diagnosis. Do not give up until you are satisfied.
Rant away 'cause that is what we are here for. Been there & done that but when you are going through it, it is very unsettleing.
Good grief! What a terrible doctor. My second rhumy was a two hour drive away. He was ok but was irritated i would not let him "treat me" with the pred. I could just read his mind - "Lady - why are you here." I was lucky that a new rhumy moved into my town. I talk more than he does but what he says makes so much sense. I really just wanted to be looked at and tested to make sure my PMR (or whatever it was - he thinks now that I have not shown additional symptoms and all my "creative" tests were ok that I had pure PMR) was not morphing into lupus or something else. I am doing great....just a little sore sometimes in my hips.
I guess you read all the internet stuff on AS. Did he give you this...
"Finally, your doctor may check your blood for the HLA-B27 gene. The presence of this gene doesn't determine whether you have ankylosing spondylitis, but its absence makes it less likely. "......from the mayo clinic website....
Thanks so much for your message. Sometimes I think the hardest part of this disease is the time we spend not knowing what the heck is going on with our bodies. I feel much better now that I KNOW, I just wish the stupid Doc would KNOW!! I think this Doc is bent on not ever admitting that I might be right. He said that while it may not be Ankylosing Spondylitis, it still could be RA or Lupus and just hasn't shown up in my bloodwork yet, but PMR is at the bottom of his list of "could be's" because of my age. What a hard head. Anyway, my hubby says I am NOT going back to that Doc!! Yay. I could have decided that myself, but sometimes you need someone who loves you to say "enough is enough."
I totally agree we think of the "good" things after we leave their office. Dang it!!
It's really hard for me to think on my feet these days. I'm not sure if it is the bad sleep, the pain, or maybe PMR affects your brain. Anyone else ever felt this way when you were in the throws of PMR?? I feel sort of ..... dumb. I also require a very long (4 hour) nap at least everyother day too. Is that what fatigue is?? Sheesh, I do the dishes and one load of laundry and I'm so tired I have to go lay down. I wanted to ask Dr. Jerkweed if I should be taking something for my anemia, but he was in a hurry!!!!
He did test me for HLA-B27 and I was positive. I freaked out at first, and then I read that 50% of people with Psoriasis will test positive for that gene marker. I have Psoriasis and so does my mom, and my grandpa (mom's dad). So then I calmed down a bit. I guess the hallmark of AS is sore hips and lower back with stiffness in the AM. I have never had a sore back. My hip stiffness is more in my muscles on the outsides (my saddlebags) and then in my quadraceps. They are so fatigued feeling. Also my MAIN concern is that I can't lift my arms more than a couple of inches. I can move my hands around as long as I keep my elbows tucked in tight to my sides. I tell my kids I have "T-Rex" arms.
I can't roll over in bed and I can't cover myself up at night. I also STRUGGLE taking a shirt off over my head. My hubby is out of town on work this week. He usually covers me up and helps with dressing/undressing. Missing him!! My nine yr. old daughter had to do my buttons up on my shirt yesterday. When I walk my stride is an impressive 6 inches long because of the tightness in my hips. I heard someone on this site say they go for a "waddle" instead of a walk. That totally describes it.
Thanks for the info. I hadn't seen all that info on Indocin. I have taken bottles of advil and aleve this past year and oddly as it seems, tylenol helps better than any NSAIDS do.
I am so glad you are feeling better. I hope to get there too, soon.
I was not anemic but one of my blood tests showed me going that way. I check my multi vitamin and it had no iron in it. I started taking one that did and the tests went ok after that. I was tired a lot also. Dont give up hope. I rode a bicycle today and was dancing in the living room tonite. It seems like a miracle cause it is still fresh in my mind when i had to take my bed covers off with my toes each morning. Funny that the websites that talk about pmr never say "EXCRUCIATING PAIN"....."Excruciating Pain," I was wondering why that isn't in the PMR description as well!!! I've had 3 babies, 2 with no epidural (not on purpose, by the way) and I still think some of my bouts with PMR win the contest of which is most painful. ha ha ha, I'm cracking up at you, yep that's how I get out of bed too, walk the covers down off of me with my toes!!
Take care!!
sure sounds like pmr. I wore button down shirts the whole time. One shoulder was totally frozen for a long time. Could only move my arm from the elbow up like you. How ever i fell into bed is how I stayed the entire night. COuld not even turn my head to look at the clock. Could not adjust my PJs or smooth my hair or pull my covers up or down. I whacked off my long hair cause i could not brush or wash it. I stayed home and only showered and shampooed when i could not stand myself. Just lifting my leg to step in the shower was torture. My hips also hurt on the "outside" part. Are you any better than when you started? How much fish oil are you taking? I was taking a bunch at my worst. I am so thankful this seems to be over for me. One day you will notice that the pain seems to be easing.I was going to bed but I have to remark about having babies. Had one with an epidural and had the second with NOTHING also. I had a German doctor and his nurse was oriental and both had thick accents. I thought I was going to get a shot for the delivery but found out I was only getting a shot for the freaking episiotomy - the little tiny cut they make you know where. A shot for that little nick and NOTHING for a 7 pound human being coming out! I screwed up! I knew I was in trouble when they tied my hands down. I am sure that was to keep me from strangling the doctor or anyone else i could have reached. But compared to PMR - that was a walk in the park. Mine started in Oct of 2006 (I was 32 then) . I felt the pull on my arms when I would try to raise them. I was exercizing alot back then. I kept thinking I was doing something wrong. It was just annoying then. By January of 2008 arms had gotten worse and my neck got really stiff. When I would lie down or even recline a little, I would get a stabbing pain in my biceps. Obviously sleeping was a problem because I couldn't sleep sitting up straight as a ramrod or standing. Finally a doctor prescribed the cyclobenzaprine in August of 2008, so I have been sleeping since then. By December of 2008 my hips had become affected. Same as you, couldn't lift my leg to get into the shower, (the lip of the shower is only 4 inches tall!!) It was really hard to put my pants on. I had to lay my pants flat on the floor and scoot my toes into them. Now my arms still can't raise up but no shooting pains in biceps when I lie down. NOW there is shooting pain in my glutes when I lie down, it is a mirror image of what was in my arms last year. Feels like a pinched nerve. It feels very much like sciatica, except it is happening when I lie down. I figured out a way to describe the pain, you know when your arm falls "asleep" and goes numb. And then when it starts to wake up and you think you're gonna die from the pain, THAT'S THE PAIN!!!!!!
Early in January of 2009 is when I tried prednisone and all signs of PMR went away, I have been just dealing with the even worse drug side-effects. So now the pred is out of my system and bit by bit the pmr is rearing its ugly head again. My arms and neck and one wrist are way bad, but my swollen knee hasn't come back yet and my legs are only 50% as bad as they were pre-prednisone. Everyday the legs get a little worse though. I feel the disease slowly morphing and moving and I think that is a good thing. I feel in my bones that it is losing its energy and hopefully dying off.
Right now I am taking 3000mg fish oil and 3000mg of borage oil. The borage has omega 6's and 9's so someone suggested I take both. For several weeks in January I took just the fish oil though (4000 mg) and I think that is what helped me feel soo good for soo long even after I went off the pred.
How much fish oil did you take at your worst??
At the worst i as taking 8 grams a day. Yup. ALso the New chapter zymafled and anything else i thought might help. My knees were awful also. Swollen up real bad. For awhile they had the wad of socks feeling behind the kneecap. But today they are normal. Did you see Mystery Diagnosis last nite? The guy had reiters - i think that is a kind of reactive arthritis...He was just like us. I just looked at the tv web site...and saw this...
For unknown reasons, certain people are genetically susceptible to reactive arthritis. Eighty percent of the people with the type of reactive arthritis known as Reiter's Syndrome have a gene known as HLA-B27. These individuals are at risk for reactive arthritis following an infection with certain bacteria or viruses, including: CampylobacterChlamydiaHIVSalmonellaShigella
You may want to google this....
by the way - my pmr was the worst when i got off the pred. took a while but very very slowly I got better. Just keep giving your body foods and things that fight the inflammation - that is what i did. I dont know why I got over this so fast but I sure wish i knew and could bottle it.
Smartie
Are you a man?
Men get over pmr quicker - known fact.
mrs UK
Nope - I am a 54 year old woman. I dont have a clue why I got clean of this so fast. I was determined though to get healthy - not just take meds that did not cure me and might be doing more damage. Smartie, how long did your PMR last??
By the way, since this post is about PMR in younger people, I wanted to share with you all some quotes from the article I printed off and tried to get my doctors to read (they would not).
It is from the Journal of Family Practice, July 1998, "A 24-year-old man with symptoms and signs of polymyalgia rheumatica." These are just a few quotes, the whole article is very interesting to read what he had to go through just to get his diagnosis. Just google the Journal name, year and article name if you want to read it all.
"Most physicians regard polymyalgia rheumatica (PMR) as a disease that affects only the elderly. This case report of a 24-year-old man with proximal limb girdle muscle pain, stiffness, tenderness, weakness, and an elevated erythrocyte sedimentation rate, who had a dramatic response to steroids, supports the premise that PMR may affect a wider range of our population. Increased physician awareness that this illness does occur in patients younger than 50 may prevent delays in diagnosis, and decrease the needless suffering and incapacitation of younger patients with this disorder."
"Although it is predominantly a disease of the elderly, six case reports in the literature, as well as the following account of a 24-year-old man, lend support to the premise that PMR may affect a younger population than previously thought."
"The incidence of PMR is much lower in adults younger than 50 years of age, but it does occur. Diseases and disorders do not always meet textbook age restrictions or definitions. Physicians should, however, consider PMR after ruling out myopathy, arthropathy, and infection in any adult presenting with persistent proximal extremity muscle pain and tenderness. Associated complaints of headache or tender temples should mandate a temporal artery biopsy or a consideration of higher doses of steroids. Although the dramatic response to steroids in this patient does not completely confirm the diagnosis, it is possible that he represents the youngest patient reported to have polymyalgia rheumatica."
I felt baddish with back aches for a year with no blood tests showing anything. THen in october 07 I started feeling really bad and it just got worse and crp and sed rates rose. Started pred in oct and stopped in Dec. Agony. Intolerable pain. Took NSAIDS until May 08 when i discovered i could tolerate the pain without nasids. Continued to get better to this day. I only have discomfort that comes and goes a bit in my hips. I walked to the corner store today for a half gallon of milk. Scrubbed the tub yesterday. Feel real good and happy. My tests are good. Crp was up a dash last test but only like 2 points. Does not worry me. I noticed sed and crp would rise and fall throughout recovery period. Also, I got better and worse then better....up and down....but continued to have a better better....make sense?Wow that is pretty fast. Good for you. I took the dumb NSAIDS for 12 months before I stopped. I finally realized I didn't feel any worse not taking them. That's a lot of wasted pill swallowing!!!!
A better better, it does make sense. It comes and goes, but improves a little each time. I was wavering on going back on the prednisone, they would have to medicate my high BP, and put me in a regular hospital for SEVERE constipation and in a padded room hospital for a "period" that never stops, because I would lose my mind!! Ha ha, okay, with it all spelled out like that, I have regained my senses. We will keep marching on!!
Reading your symptoms there is no doubt in my mind that you have PMR. That doc should be disciplined for his behaviour!Hi, Folks,
I was 46 when PMR-CGA started, 48 when diagnosed - not nearly as young as 34, but still way short of the average 70. My first internet search after diagnosis said 'no-one' under 50 gets this, but otherwise I have classic symptoms. Not sure I trust the standard definitions any longer . . .
C.
Hi, first posting! Nice reading you all.....
The age thing seems to be such a hurdle for some doctors. When I initially got the fairly classic signs of pmr my gp (who's known me for 15 yrs) said it was 'old age' and I'd been overdoing it. I had two more phone conversations with her as it got steadily worse and she said she couldn't help! She ruled out pmr saying I was too young. I was 51, slim and normally fit and active and definitely not a hyperchondriac. I changed doctor; he instantly recognized the possibility of it being pmr and referred me to a rheumy. I was diagnosed quickly then, but there is still a slight doubt over it now, a year on, so we are using it as a 'working diagnosis' till something else shows up (he and his colleagues thinks it 'represents polymyalgia').
What I did recently was google 'polymyalgia younger patients' and I found a pretty conclusive study of a young man of 24! The study thinks he is possibly the youngest diagnosed person anywhere.....
Doctors can be very frustrating when they are on their own mindset; I am lucky now to have two excellent guys looking out for me. Good luck all the young bods who read this.
Wallis
Wallis
There is a PMR-GCA UK Support Group located in the South West more information on www.pmr-gca-northeast.or.uk - also there is an email support group for men only.
mrs
Thanks Mrs UK, yes I'm on their list too! I find PatientUK site forum so helpful and the new national site really good. I spend hours researching on the internet but just found this forum yesterday and was in the mood to join in.
Thanks again... best wishes.
Wallis (female!)
Hello there,
new here and recently diagnosed by my GP and myself with PMR from a symptom list and an ESR of 39; having previously been diagnosed by a Rheumatologist, with "probable" Fibromyalgia. I was thought to be too young to have PMR at the time (3 years ago and I was 50 years old). My original symptoms were classic for PMR with stiffness of shoulders and hips at night, unable to turn over in bed or get out of it. I also had night sweats and Carpal Tunnel Syndrome (put down to the menopause). My ESR was borderline raised at the time so perhaps this would have a negative influence on the diagnosis of PMR, I was also having periods when the symptoms were mild. Because I had a diagnosis of some kind originally, I went all out to research Fibromyalgia (I have sooo much stuff) and what I could do to help myself. Well nothing has had much effect, but Melatonin has helped to get my sleep pattern back and 5-htp has helped to make me feel better in myself. I was just going down the route of LDN after a severe relapse of "Fibromyalgia" when I realised than the classic symptoms of PMR were back, being unable to move once laid down in bed, difficulty in getting into the bath, couldn't put my socks on by myself, (forget tights)
couldn't style my hair (it looked like I'd borrowed it), and various other embarrassing stuff, but also feeling dreadful. Started on 20mg Prednisolone last Friday and by Saturday morning I was already feeling much better and able to get out of bed (at 4am - steroid effect). The relief from symptoms was so welcome I couldn't care less about the Steroid side effects - and of course I've researched ways of reducing those. I could be bitter about the lost time, but I would just like to encourage anyone who believes they have been misdiagnosed because they are not in the correct age bracket to persist and make a complete list of symptoms to take to your GP. Sorry this is so long, but the steroids are making me hyperactive, or maybe it's relief!!Interesting thread. I am forty six. Even Mayo Clinic does not know what I have. Just something. Well they have of course decided that what was always said to be fibro is a muscle condition. Also I uaually can not lift my right arm without prednisone. I have been faring alright off of the prednisone on 4,000 mg of fishoil. Not saying that I have PMR. Just I have often looked for reference to younger people possibly having it. I have Sjorgrens I maybe have RA? Just I am not exactly text book for RA. Most RD's are confused by my muscle problems. After hearing the same thing from so many doctors I feel like a freak with some new AI disease.
I have super bad tendonitis on MRI. I am RF positive, anti-ccp positive. Negative ANA but I have Sjorgrens and should be ANA positive and show no markers for Sjorgrens. I am getting boney growths in finger joints and narrowing of joint space in toe and have swollen feet and ankles. Can you have PMR and other AI disease? Besides GCA? I do not have that.
My neck is often very stiff. Always actually. The tendon that goes into the back of my head. The muscles in the top of my back were the back and neck attach are always super swollen. My rib cage feels like a very tight girdle. Really stiff and really tight. I get alot of back pain. Actually I pretty much hurt every where all of the time. Prednisone pretty much helps my stiffness as well as swelling. Sometimes there is nothing that relieves my pain.
I have had elevated ESR. As a rule I do not swell as much as someone with RA. Well maybe some day I will know what I have?
Hi
1
Being reading through all mail, just being told I might have pmr going to seee rhumi next month. Have been reading a lot about food with anti inflamatery goodies, could it be possible to have a small list of these food?
thanks
veroB
On the website you previously visited there is an article
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Treatment of Polymyalgia Rheumatica via Nutritional Therapy by
Jennifer McDermott DipION, MBANT
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