Going crazy...

It is a struggle. I'm in a lot of pain also especially my shoulders and neck but I know if I don't get up and move and get exercise that it magnified by 100%. Hope you feel better.

Hi sandybug...    Sorry your feeling miserable...  I hope some reprieve time comes your way...  OR something comes along that your able to do to help distract from pain issues... craft or the colouring in craze that's taken off...that's a wonderful distraction and does help calm the brain...

Re your RA tests..they generally do come back negative, repetitively.  However there is a 'Certain Test' that can be called on which is a 'Specialist test' for RA, not the usual typical type test they play round with.  I'm not able to name what it is but I only know about it due to my dear departed friend who was treated for Fibro for two years, and was 6 months off from being permanently in a Wheel chair, however after having to move back to her mothers house she was in a different State, and was able to see a Head Specialist in 'The Dept' of the Melbourne Hospital, and it was He who said, quote 'you don't have Fibro, you have RA!!!, and I'll prove it.' unquote. She said,'but all my tests have some back negative', and his said,  'This particular test will prove you have it'...  And so it did.  Sadly she had the 'WORST' type of RA...  Immediately, she was put onto some serious Disease modifying drugs, masses of Painkillers, BP tablets she was also taking tablet form chemo once a week to fight the RA.  That specialist saved her from being permanently in a wheel chair.

The basic tests they do mean diddly squat.  

Have you tried just floating in a heated pool!  IT'S WONDERFUL!!!  Also it's the best way to exercise for us sufferers...  in heated pools, and exercise gently, and do gently stretching...

All the best sandybug... xxx

Hey Sandybug

I was diagnosed over 20 years ago, and only in the paSt year has it ever flared this bad!

It is hard to distinguish between FM and OA . My personal guess would be at least some of it is OA.

It's a struggle, and a real problem getting the right meds for you, because everyone is diffrent.

Be patient, don't stay with a doctor who you feel doesn't understand you.

Good luck, this is a very good place to vent, and get get good information from people who understand!

FM is a real mystery to me

I was diagnosed about 5 years ago but I know I've had it for years I remember the growing pains etc growing up. Recently I also been diagnosed with PMR and been on prednisoneNow the Drs think it was just a horrible flare of FM 😁 And possibly not PMR So this disease is full of surprises

So keep up with positive thoughts and you're not alone 😻

Hi Sandybug; I can really relate to your story/concerns re difference between if Fibro and OA, as I too, have the same conditions.  I feel that for me, that if my Joints are really sore, I treat these pains with my meds for OA (osteo panadol, and some NSAIDS)......and yes, due to my bad OArthritic neck (having no cartilage on R) side of neck), this naturally upsets the muscles in neck and shoulder blade areas.  This is when I find I have to take my Amitriptylline, as the "burning" pain that comes from over use of same, trying to support/do the work of the skeleton.  I also find that physio, and remedial massages, really help these muscles, and the physio helps to re-allign the neck bones for me.  As for other joints, such as wrist/fingers/hips/knees/rib cage and ankles, in the past I have had Cortisone Injections into these (prob about 3 into each joint over a period of a couple of years, as we can only have 3 injections at the one time): these have Really settled a lot of the Arthritic pain in these joints, and I highly recommend them, as the OA really only affects my neck and hips/cocyx  now.   I think we can tell which is which pain, when we really think of "the pain" at the precise time, as joint/AO is a sharp, ongoing pain that gets worse if we sit/walk for a long time (I find sitting and reading is hard on my hips and cocyx, and driving the car is bad for my neck/shoulders).  However, the muscle burning pain can come at any time, expecially worse in weather changes......really bad in the heat...and IS a burning pain.....the Muscle Fatigue....it is something that I used to think everyone got when using these muscles for a while (say when working over the sewing machine)....my muscles over scapulas Really hurt....to the point where now I can't use the machine....my OA in lumbar region hurts, and my muscles burn.

?As for the depression, this I think we can all relate to, as who wouldn't when we struggle every day to try and do the smallest things that everyone else takes for granted, and which we did as normal, too.  Our brains are not affected, but our body JUST won't let us do what we want, hey?......that is why I feel that it is necessary not to be too hard on ourselves, talk to others (even counselling/psychologists), as we need to be reassured that it is NOT in our heads/looking for attention....we Know we are not the people we used to be, and don't like what we have become....with no end in sight......

?You will find that some days are ok, and others not so good.....but by talking to others on this forum, has helped me to ven;  to understand that I am not the only one, and everyone has found different ways to handle different aspects of this condition (and as many will point out that each of us is different in some ways, and find different measures that help).  I don't know if anyone has mentioned that the One common aide is taking extra Magnesium in tablet form, as it is very helpful with our muscles (for the cramping of limbs, and assisting muscular activities)......I also take a Multi-vitamin which dissolves in my water bottle, and contains all the needed vitamins and minerals that our bodies need.....this helps give me the extra oomph of energy that we need.

?I am sorry that you are finding deterioration in your body; however, this seems to be happening to me, too.....I feel that I have got a lot worse over the last 2+ years, after having been diagnosed in the late 90's, too....for years I was able to do small employment (a few hours a few days a week), but know now that it is completely impossible.....and this really frustrates me too, as my brain is still good, but body won't keep up.

?Sorry if this has become an extra long saga, but really feel that you have so many of my issues, too, and would hate to feel that anyone would have to go through all the testing, seeing different drs, trialling different meds/therapies, with the financial costs that goes with these.....if someone had been there for me in the first years, I think maybe I wouldn't have had to go through half of the stressful testing etc that I have.....

?Research is also a Very good therapy and learning/teaching scheme that I have found sooooo very helpful..........................good luck, and keep in contact with the forum (and private mesage if you feel like talking on a more personal level???).......................Bron

Thank you all very much. It sounds strange, but it is really comforting to speak to others with same condition because you are all so compassionate. I'm sorry that you are all dealing with this too. I' m going back to ortho and found the name of a new pain specialist (DO). I'll check back soon

Have you been checked for MS? Falls are more associated with MS than with fibro. Symptoms are similar but MS you can see on a head CT.

well if i was you i would say you have got fms. because you sound same as me i have cervical spodyliters and o.a. and ra. so i think we know our own bodies . im depressed too with it all 24/7 .... and i couldnt exercise to save my life with all this pain i can hardly move