polymyalgia

Has anyone been diagnosed with polymyalgia or polymyalgia rhumaticia with these LOW VITAMIN D levels?
can anyone explain the relationship betweenthe SED rate and the VIT D and the polymyalgias??

Yes, and I think there are a lot of old timer lymers with this condition.

My Aunt who is 84 came down with parathyroid stuff and vitamin D blabla and then the polymyalgia rhumatica that they put her on prednisone for a long time and then took her off slowly and then it came back and was given another test and now has something called Big Cell temporal artery condition that is very dangerous.

They are always checking her SED rate and that is how they descide to taper or increase the prednisone. There is a thing called lyme induced polymyalgia rhumatica. fish around for it . I have to read about it myself because i have had all the symptoms as my Aunt and the only thing that would help was prednisone. so I never got the official diagnosis even after being MRI brain neurologist, rhumatologist . All kinds of doctors and they kept blaming all the symptoms on HEP C. Then finally in November I got the LYME blood work done.

So I am half on the prednisone for adrenal exhaustion or insuffiency from being put on cortisol yrs ago for that and trying to stop. But the other reason I'm on the prednisone is because of all these symptoms.
So it stands to reason that you are going through the same thing right now, Cajun. Didn't you just get put on cortisol for adrenal ???

we have to investigate this more.. It is very serious. And I reallly see how the steroids little by little did make the condition worse. But at same time from untreated or mistreated lymes this is where it seems to be going after too many years for some of us. My Aunt has been very healthy her whole life . I am not saying she has lyme but I would not be surprised either. She lived on Long Island her whole life.

I just checked. my SED rate is 2 but I am on prednisone.
cajun, what is your SED?

Razzle, what does dr say is what can happen from high SED?
Do they give meds for that?

bucci,

My SED rate has been high for a few years and the only thing that ever hurt me back then, was my ribs. I was given a prednisone pack once for my ribs and it did help but I was never given anything again when my SED rate was high....until now....now that I am in all of this pain. I've been taking 10mg of hydrocortisone in the morning and 10mg in the afternoon and I have to say that I do notice a difference. My pain is not as intense anymore and I don't wake up wanting to die with breakthrough pain. I will be taking 10mg twice a day for two weeks, then 10mg once a day for two weeks and eventually weaning off completely.

I have to find my bloodwork to tell you what the number is but it was high.

Razzle!!! organic Ice Cream ???

finally a cure I can live with !! wow you are so funny. what did you mix with it?

Humm Mother's child ? what type doctor told you a high SED was nothing to worry about?

I never even knew what it was untill my aunt got the polymyalgia rhumatica.

Cajun, I know exactly what you are talking about with the rib pain.

I feel like I am either in horrible pain or very depressed from pain medication.

last night I didn't really sleep. I was more like nodding out and having bad dreams.
then I spend the whole day in bed watching TV like a zombie trying to recover from last night.

year after year I keep saying one more year I'm gonna try to figure this out.

last night I woke up from bad dream and the thing that really made me realize how messed up I am is how
the upsetting thing was that ..I am still here.

So what is the difference between polymyalgia and fibromyalgia? I just go to a regular doctor!

Bucci,

about the ice cream...it was vanilla flavor (yuk) but I couldn't have any of the other flavors. Sometimes I'd put a special berry juice with it and make a milk-shake-like thing that I'd eat with a spoon. I had to do the liquid diet because of a partial obstruction in my bowel (caused by Lyme inflammation) anyway, so I turned it into a treatment by using the meal replacement mix (the free amino acids are healing to the gut lining, especially the L-Glutamine). I couldn't even eat mashed potatoes without them getting stuck (not a fun experience...very, very painful). The partial obstruction went away while I was on the liquid diet. I have unfortunately since discovered that dairy proteins cause problems for me too, so have had to give up the ice cream & cheese (never did care much for drinking milk).

Take care,