not happy with unknown

well i just had appt with my rheumy, whom ive seen now, i think 4 times since oct 25, gp diagnosed me with pmr, oct 12, without doing any base blood work at that time, put me on 40mg pred immediately that day,relief from all symptons within hrs, the usual, couldnt raise arms, get out of bed,buttock and hamstring pain etc, then decreased down to 20 mg nov 1, between gp and rheumy, previous in sept gp had done ultrasound and xray on shoulder, right one was the worst, abdominal ultrasound, external and internal, at that time had blood show up in urine, had cystoscopy done, all clear for tumors nobody knows what caused that to happen, anyway, was on 20 from nov1 to jan 18, at which time rheumy reduced me to 17.5 as symptons seemed under control for mostpart, although each morning right shoulder still some pain and discomfort for few hrs each day, on and off some butt hamstring discomfort, but greatly reduced, had few bad days, maybe caused from overdoing etc, and thing is, had back issues prior to all of this, mri in june showed herniated disk, stenosis, degenerative etc, now rheumy was never totally convinced i had pmr, from begining, as no baseline bloodwork done initially by gp, so the pred i was on for 2 wks before i ever saw her, she said clouded everthing,. The point is, just saw her past tuesday, told her had few bad days, but sometimes on awakening, when first get up, shoulder seemed pretty good, then within half hr, pain started, stiffness etc, right off the bat, she said, then that pain was not pmr, also, moved my shoulder and arm around, this was about noontime, and said range of motion good, pain not from pmr, says recommending pain management dr, and agrees with visit to back specialist for back issues. I asked what is causing these symptons i,m having, pain right shoulder,in mornings mostly, sometimes last whole day, her answer was "i don,t know" need to see pain management dr . This statement has left me frustrated, stressed and worried, why can,t anybody tell me what is causing all this pain im having, not from arthritis gp says, not rotator cuff, calcification reduced to what was in shoulder, i just feel neither gp or rheumy getting to answers for me, and is stressing me out mmore, meanwhile have to stay on pred and reduce as normal to wean off which will take a long time as you all know,blood pressure lower than ever been, apparently markers lower know, although wbc still up, apparently from pred, sorry for long story, but so upset and frustrated with what seems like they don,t know what is wrong with me, although still treating me for pmr ? i don, t know if anyone has any advice for me, and i have read so much on this and other forums, so confusing, please help,oh btw, just had physical 2 weeks ago, all other bloodwork good, no blood in urine any longer ,heart, lungs, etc all ok ?

11 Replies

  • Then just sit back and take it day by day. The medics do really seem to have done what they can, you have 2 referrals in the pipeline which may help and you know you don't have any other issues. Continue reducing steroids slowly and if it IS PMR you may well find that as you reduce the PMR-like symptoms may return indicating caution in the reductions. If that happens then you need to see your doctor so that it may be documented and the appropriate measures taken.

    Truly, if I had any medic tell me that they 'don't know' I'd be thankful for their honesty. Better that than a lot of medical gobbledegook which doesn't amount to anything!

  • Hi ravine,

    I think you are just going to sit with the uncertainty for a while. In a sense it is the nature of the beast. Your medics are being very thorough and the ultimate test for PMR/ GCA I.e. The positive rapid response to Prednisalone has been passed by you. A lot of us are diagnosed on that alone. Perhaps you would do better on 20 mgs as your symptoms are leaking through. It may turn out that you have more than one condition which is extremely confusing. Pred itself brings its own symptoms, it can make you anxious or depressed which makes everything feel much worse. You were started on a very high dose, was GCA suspected? I am sorry you are feeling upset. You are not alone here, please keep us posted on your progress. Help the process by taking great care of yourself, pace activities, get lots of rest/sleep. You cannot be the old you, don't try. Good luck and best wishes.

  • There aren't always answers I'm afraid - and as pdc says, how refreshing to find an honest doctor.

    Go and see the Pain Clinic - because mine was able to sort out the non-PMR pain I had. Muscle problems won't show on scans or blood tests - and the pain people may work out what it could be, You have nothing to lose.

  • I do have pmr and shoulder pain which I am seeing a neurologist for testing next week. I have been trying to get it sorted out since June

    I do understand how you feel. Take a deep breath and live one day at a time. You will get your answers but just not today. Wishing you well.

  • thank you bunnymom, have you been treated with any medication since june, had other testing done

  • I am taking 600 mg of gabapentin 3 x a day for nerve pain which helps. A physical therapist referred me to my current neurologist

    An orthopedic Dr did x-rays and said it was pmr.

    The rhuem Dr said it wasn't and to see a neurologist. My GP said it would get well on its own so you see it's been up to me to get myself to the right place.i have had x-rays and MRIs

    Next week I have nerve and muscle tests so that should tell the tale. He suspects a pinched nerve maybe a bulging disc. I am 60 and this is all new to me. It is a challenge sorting out what pain is what and I don't think the Drs get that

  • oh yes, i know how you feel, when can,t get a confirmed diagnosis, i too have back issues, herniated disk, stenosis, degenerative disks etc, had mri done last june, long before any of these apparent pmr symptons became so severe, i went to a decompression clinic, saw a dr back then, was considering that therapy for my back issues, did on my own, not through my gp, his answer with back was always arthritis, but can back problems lead to shoulder pain ? i don,t understand, exrays, and ultrasounds, don,t show enough arthritis to cause pain and stiffness, and was some calcification on initial ultrasound, but for some strange reason, apparently that has become minimal now, so you see, although my gp initially diagnosed pmr, without baseline bloodwork, and put me on 40 mg of pred in oct, the rheumy is still not convinced it,s pmr, inflammation markers are not notably apparent enough to suggest pmr, although my understanding is, mostly diagnosed by symptons, and yes, i am down to 17.5 mg of prednisone, which i absolutely hate to be on, especially not knowing if pmr or not, so you can understand my frustration and stress in the unknown, as i,m sure you suffer from as well, nobody has suggested mri, or catscan on shoulder, and neither dr has suggested seeing neurologist ? and i did ask gp about physio which he said was fine, but haven,t seen one yet, if you don,t know what is wrong with you, reluctant to have any more treatment for unknown condition,

  • Understand that totally.

  • Back muscle problems can cause shoulder pain yes - and they don't show up on scans. A physiotherapist is possibly the most appropriate person to look for such problems - particularly a specialist sport physiotherapist.

  • oh thanks pmrpro, so lower back pain can cause shoulder issues , that,s what i wanted to know, have been going to make appt with physio, was waiting to see what dr,s say as to pmr diagnosis, or something else, but i will go ahead and see physio for sure, although i am being referred to back specalist, haven,t go appt yet however

  • No, that isn't what I said. I said back muscle problems. In general.

    Low back pain can be DUE to back muscle problems, shoulder problems may be DUE to back muscle problems. Back pain doesn't cause the problems.

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