Could it be Polymyalgia?

Have you been tested for Lupus? I had many of the symptoms you described and either no one would believe me, or didn't know how to diagnose my symptoms. It took a while. I would recommend a good rheumatologist.

Hi there i have been experiencing simmilar things and the same as you have not had much help from my docs i went to bed one night and woke up with numb arms and hands , this continued for a while and then it progressed into my whole body from my nexk down been paralysed in the morning for at least up to half an hour and then it wases off , not completely thou , my arms and hands ache all day , i often describe it to my friends that i feel like a monkey kinda draggibg my arms , i also get burning jn my skin sometimes when ma clothes move it hurts like mad as if my skin is going to go on fire , i have had steroid injections for carpol tunnel and narproxyn , i am now awaiying an mri scan and nerve ending testing due in december , i also feel as if my doc looks ar me as if to say stop talking rubbish but it really brings my day down

I've been reading your posts about your pain in hips and shoulders.  I have been doctoring for the same thing since June 2016. I woke up one morning and had debilitating pain in the left hip.  i made an appt.  He said bursitis and gave me a cortizone shot.  It didn't help a bit!  A month later it was a little better, but then I felt some pain in right shoulder and groin.  In the last three months pain spread across the pelvis to the right hip and top of leg (behind the thighs in both hips).  I have been laid up for two months now.  I've seen the GP twice the last two months.  He gave me cortizone shot in left shoulder.  It didn't help one bit.  The second time he tested me for PMR which my dad had before he died.  I told him straight out I would NOT take predizone; I'd be dead in two years.  The PMR test was negative.   I have continued floor exercises to keep muscles limber, but it has become more painful.  I have been taking OTR meds which only take the edge off the pain.  He says he doesn't give meds for symptoms until he knows the underlying cause.  I said I need relief!  He agreed to a script for muscle relaxer.  It does not help.  I take lasix every day.  He said cut back on that.   No difference after a week.  He said cut out Niacin (for cholesterol) for a week.  I did; no difference.  So I am struggling.  I wish I had asked me thyroid dr. if I could lower my does of levotyroxin to 112 instead of 125.  I am seein a rheumatologist later this month.   I have considered post polio syndrome which may father also had.  I have learned a child could have had polic virus without knowing it.  Perhaps I did.  My dad had it and was at home during his illness.  I could have had polio.  I'm going  to mention that to my new dr.  Perhaps there is a test that could  tell me if I had polio.  I am grabbing for whatever straw may be out there.  My grown daughter says it sounds like fibro myalgia.  Whatever it is, it's debilitating and I am growing frustrated at not being able to move without excruiating pain.

So I hope to follow your progress and pray for the best.

Jan S in Illinois

Hi,

About 6 weeks ago i awoke and could not raise my arms above my head or in back of me without excrutiating pain, every morning it got worse, i went to doc and she said i probably hurt a ligament at the gym and told me to not work my arms. I stopped going to the gym and the pain spread through my body, arms, legs, back, knees, glutes it was horrible. As the day went on i would feel much better except for my arms, i was getting really scared. Back to the doc, blood tests and nothing. I was pretty scared. I had to go out of town and stayed in a hotel for 5 nights and i awoke with much less pain thru my body. I came home and changed my firm mattress to a softer one and within 3 days most of my body pain was gone and i can lift and move my arms around. Unreal. I am so happy. I wonder if something that simple could help you, strange how it came out of the blue but it left just as quick. How are you? I know this is an old post......

Hi Lesley

You sound exactly like I was, though my hips and lower limbs were worse affected first. My doctor also told me I was anxious, post menopausal and should expect arthritis at my age, 50 at the time I recall. The only way I got my diagnosis was by going private as I was so desperate and getting nowhere with my GP (my flare up at the end of September was diagnosed as a virus despite getting worse over many weeks)

You need blood tests to check your cpr and esr levels and white cell activity (reaction to infection) asap. If its PM they'll most likely be high but there won't be any sign of infection / white cell activity to explain. This being the case you should immediately push for a rheumatology referral. I had two lots of blood tests within a fortnight before seeing my specialist which showed increasing inflammatory activity with no cause, a clincher in getting your doc to do that referral.

I too had the hypersensitive skin pretty much all over though it started with my head. I have noticed an inexplicable 'minty' taste at times which couldn't be explained by recent tooth cleaning. I've had dry eyes and eye problems for a couple of years which could well have been precursors of all this. My optician asked me of I had joint issues as he thought that was causing me problems; a known link apparently. I also developed raging gingivitis despite fastidious dental hygiene. Like you say, lots of weird, apparently unconnected health problems easily put down to to being peri or post menopausal.

Look out for for symptoms of GCT; appalling one-sided head pain, sight loss / double vision, jaw pain, scalp hypersensitivity. My rheumatologist even missed it but luckily my husband trawling the NHS website recognised I'd had the symptoms. Emergency GP at my surgery immediately prescribed steroids even before rheumatology report came through as risk to eyesight so significant.

You must push to get this sorted. No-one should suffer as you are and be fobbed off with glib comments and silly suggestions. Exercise will become pretty much impossible till treatment kicks in. Up to till early September I was doing yoga pretty much every day till I simply couldn't get up off the floor any more. I have gone from being very active and fit to being compared yo a friend's 100 year old mum in terms of how I get in and out of the car. Pred for 2 days has already made a significant difference.

I wish you success in getting a diagnosis and a swift improvement with correct treatment.

Rose

Lesley,

I was shocked to read your post. Shocked because I have many if not most of the symptoms you do and I was ascribing it to the same things. I never even thought about the dryness being related but at the same time this mystery pain came I had to start using eye drops. Never in my life up to now have I had to use them regularly. I to wondered if it was inflammation. I am just in the beginning of it. You see, I just had a knee replacement and I initially thought that misuse of the crutches may have been the cause of my left shoulder pain... until I started having pain in the right shoulder also! Made NO sense. And the pain is not actuall in my joints, I also used the lactic acid example to try to explain it to my wife but like you I hadn't been working out so it could not be that.

We are probably about the same age give or take a few years, I am 52 year old male in the United States. Please share more with me about your pain, when it started and if you had any surgeries prior to the pain. I'm grabbing at straws here but I am afraid to go to the doctor and be told I have something that cannot be dealt with or that has a catch all diagnosis like fibro myalgia. I know it's a real thing but in the US I think I lazy doctors also use it to put a label on something they can't figure out.

What are your recommendations? By the way, the skin irritation issues I have not had, just the eyes.

Hi Lesley,

Have you asked your doctor if you can have a trial of HRT? It sounds to me as if a lot of your sympTom's could be menopausal. I had some of the same when I wa

s approaching the menopause, especially the eye and nose dryness, a short trial will not do you any harm. As for it being PMR, it could be, and apparently one of the best tests for it is a course of prednisilone, PMR is supposed to respond within 3 days to steroids. I would definitely go back to your doctor. I do hope you can get it sorted out.

Oh my God- Leslie this EXACTLY describes what has been happening to me the last month. I nearly cried when I read your post, I've never read anything so identical to my weird symptoms. I also have back pain/ stiffness. I've been scared to death. My doctors have no idea and are no help and I've been referred to a neurologist. Have you made any progress?? This is so stressful and terrifying.

I think you have myalgia reumatica. My GP told me that I might have this problem. He has recommended steroids but with weight gain and change of mood l am reluctant to use them as I have a mental health issues. Ask for second opinion. You are entitled to receive this according to patients charter.

I see this post was from 5 years ago. But i have had the exact same smptoms for a year now. And my dam doctor will not listen to me! Did you ever fi d out what is,wrong?