Losing my mind | Arthritis Information

Hello everyone, I have not had a confirmed diagnosis as one of my GP's doesn't no whats wrong with me, they other says Fibromyaglia & my Naturapath says no question you have PMR, but after waiting for 10 months I finally have an appt with a Rhuemy next week in Toronto. I'll try not to be long winded but I really would like to know if anyone else shares my weird pain. It came on suddenly 10 months ago starting in the muscle between my thumb & pointer finger, then my upper arms, then my poor feet felt like I was walking on bruised gel pads to the point I have to always wear crocs in the house. It wasn't long til my elbows were throbing & swelling which I now have lumps & excruciating pain to touch the surrounding area & joint. Then my knees started & they feel feel like they are going to dislocate if I walk up & down the stairs, even walking can be a chore at times. Now my hips & shoulders have got in on the action & my back just couldn't had to jump in there. I'm exhausted due to lack of sleep since sleeping is when they all decide to have a party, either by going numb & tingly, pains going off anywhere like firecrackers, seizing so I can't move..etc etc etc. Getting up smiling is something I've almost forgot about, tears have taken it's place. It's seems to take forever to get going & moving about. Even to curl up in the evening & watch tv is always interupted as once I start to rest, it's not long till it starts to amplify. Every day is like a box of chocolate cause I don't know what I'm going to get. Another day, another pain. My tummy also started to swell so bad that I looked 7 months prego & was really bothering my breathing, I finally went off dairy,sugar,wheat, yeast, etc, to see if it was unrelated & just maybe it was an overgrowth of yeast, welllll..it's down some now & I do feel better. Any information would be much appreciated as I am just so frustrated, sad,angry,tired, & plain wore out. Although I am trying to make light of it all, there is times I just wish someone would put me out this misery that no one seems to understand. Thank you in advance.

lab n newf

Oh dear you are in the middle of the woods, let us hope that your Rheumy visit next week can clear up the confusion. Everybody has different pain and starts with pmr, but if you have had it for a long while and without medication, I should imagine it will attack everyway.

Have a look at www.pmr-gca-northeast.org.uk it contains the British Society of Rheumatologists guidelines on the diagnosis and treatment of pmr. It may enlighten you.

In the meanwhile, hang on in there.

Thank you Mrs. UK...I should have mention'd that I have been taking natural med's, it is a slow process & who knows how sucessful. I thought I would try & cut back this past 2 weeks due to the cost but I have been in excruciating pain...not sure if it's getting worse or caused by lessening the meds. I hate taking pills at the best of times but this method has me up to about 30 pills a day plus 2 powdered drinks a day.

I have tried to read as much as I can find on the net, & they all now seem to say the same thing, however, non of them say anything about feet either. I know there isn't a classic case but even my fingers ache today. I will keep my fingers crossed & try & read other posts...I'm just a sponge for knowledge these days. :) Thank you

Well dear alot of things can bother the feet. RA is one of them. I wish you the best of luck at the rheumy. Sometimes a proper diagnosis takes awhile. What ever it is you are not alone in this. Please be careful 30 pills of anything even if it is called natural would be something to run past your doctor.

Let us all know how your visit goes. I hope you find both answers and solutions.

Sorry for your pain. After many tests and first being told I had pr, was finally diagnosed having Chronic Fatigue syndrome which I must say apart from not having hight sedementation in blood you have the same aches and pains in different places and varies with people.

I am doing much better with diet of no coffee tea alchool or blue cheese, plenty vegetale, and pain killer and mild anti depressent, used as pain killer> Morning are the worst but it gets better as the day goes on. You must not be depressed as it is very bad for your immune system so it is important to be positive. For me once I knew what I had I could cope much better. I was diagnosed in Sigapour as I live in Bangladesh. But I am French and going to France this summer where I found out that the only Dr in France doing research on this disease is in my home town. Apparently he treats people with a diet, homeopathy medicine and mild depressant. Just the same as the Dr in Singapour recommended.

Good luck

It does not sound like PMR as you mention no stiffness. Prednisone should take the pain away. If it doesn't it is not PMR. Thank you all! There are a number of things that I forgot mention & yes I do get very stiff, specially after I've been sitting for a while or awaking in the morning or just plain sitting idle for to long. It take a while to work out the stiffness but mid afternoons appear to be the best, probably when I'm most active. My family doc's have not put me on anything, the only thing they have kept doing is blood test and that's only if I go back in & stamp my feet that I'm still not well & tell them that I'm still waiting for a referral to a Rheumy so please put a push on & get me an appt asap....I started asking last Aug & finally I have an appt. next week which is in Toronto 2 1/2 hrs away from my home. I told my doc's that I would travel anywhere or go on a cancelation list just to see a Rheumy....I count myself lucky as the first scheduled appt was to be June 30, but I said I just can't wait that long.

I have been taking natural med's but it's hard to say if they have been working as I have now been on them since last June....I know they take a long time but maybe they are just making things bareable.

Everyday is different...my muscles & joints take turns at which one will be the most painful today but my arms are always real bad. I can carry weight but it's the motion of movement that is painful. Oh by the way, my blood test have kept coming back negative for my R factor, although I've heard that doesn't necessaryily mean that I don't have PMR. I guess I may be a little guessing game.

I appreciate all the information you friends are giving me...keep it coming!

Thanks

" Oh by the way, my blood test have kept coming back negative for my R factor, although I've heard that doesn't necessaryily mean that I don't have PMR"

R Factor Blood test is a Rheumatoid Arthritis test as far as I know. It can indicate RA if positive, but sometimes it is negative but still can be seronegative RA.....!!!

Hi lab n newf, I am sorry to meet this way but "welcome". We are all at different stages of PMR! It is so frustrating to not have a diagnosis and still living with the pain as well.
Some Dr's / Rheumies go by ESR & CRP blood tests that are elevated. Even this may not be positive for PMR as some folk do not always have raised markers.... if you are now totally confused, welcome to our World!!!

Another test is Prednisolone ( Pred) If you take Pred you should feel relief in a range of a few hours to a couple of days.. supposed to be positive PMR test! In my experience it took nearly 3 weeks!

I guess what I am trying to explain is ... It may take a while to get a positive diagnosis but hopefully the Rheumy will get you on the right medication for your pain!
Let us know how your appointment goes!
gentle hugs, Lyn Thanks again to all of you for your thoughtful words of care, kindness & knowledge. I will check back in after my trip to the Rheumy on Tues.

Gentle hugs back!

If you have to wait so long for a reumy appointment you should tell your doc to prescribe you prednisone. Take 30mg for 2 days , see if you feel better .That should be an indication it might be PMR.
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