Could it be Polymyalgia?

Hi Eileen..thanks for the HRT info - will take a look. GP is completely clueless. Am going to ask to be referred to local hospital Menopause Clinic (GP never mentioned THAT, I only found out through a friend it was available) will see about bio identical hormones rather than synthetic. Apparently after blood work they can tailor them to suit your 'stage' of meno so you are getting a good balance of oestrogen and progesterone. I have just drawn an extremely short straw in that my only real menopause problem is this damned crippling tendon pain. I now have pain in in lower back and pelvis. I will have to weigh everything up re high blood presure/HRT etc - so am going top think long and hard about things and take the best advice I can get. No one should have to suffer pain - and I will be marching right back to kick up a fuss about steroids if I have to - with a copy of these conversations. Thanks for your help.

Hi All

An interim update on my history. I discovered that avoiding milk gave a great improvement to the psoriasis. Now I don;t use any creams containing soft paraffin either, as it seemed to burn!

I saw the rheumy on 12th and he thinks that the problems are now due to Psoriatic Arthritis and wants me to take leflunomide - but getting my hands on it is another story! Because I chose not to go to my nearest hospital, my GP can't prescribe it..... so I will need to go back to the hospital to get the prescription there.

Ho hum, so much for choice!!

Have re-started naproxyn and it has greatly helped - have regained most movement and some strength in my hands.

Will update again soon.

I started with strange pains down the back of my legs, between my shoulders & up my neck. Finally woke up and could hardly move. It took 5 years to get the diagnosis. My tests showed negative for everything so the docs thought it was all in my mind. I was recently diagnosed as having Polymyalgia Rheumatica(PMR) with Giant cell Arteritis (GCA). Only steriods (Prednisone) seem to help. It is imperative that you exercise.

Specifically walk/swim or both. It will help your pain level & stiffness immensely. I know you feel very tired but do move as much as possible. Do not drink alcoholic drinks and watch your sugar intake. Eat as healthy as possible. It is what it is so your health is now in your hands. The medical doctors do not fully understand all the autoimmune diseases. Plus, these maladies mimic each other so it is hard to diagnose which autoimmune disease it is.

Hi Lesley,

I am 57 year old female who has plaque psoriasis. My dermatologist recommended to try a new bio advance drug called Remicade this is a infusion which is given every two months. He told me it would combat joint destruction down the road. I agreed and last Oct we started the drug well the. Psoriasis is doing great but I believe I have now got drug induced something lupus or fibermyalgia or god only knows. I have much the same pain in the muscles as you and when you think it can't get worst it does I drag my feet around at work near the end of the day. It seems to get increasingly worst in the night time and last night it moved into my jaw from my upper chest. The areas are wide spread calves of my legs Insteps side shoulders arms and they are just a dull aches and feel very fatigued. The smallest two fingers on both hand are dead when I wake in the morning.

I can't take anything until I see a specialist and she it out of town for the month of October. I also have what's called fatty liver disease Nash inherited from my father 's side of the family. So I can't take no drugs at this time.

This sounds much like what I am experiencing.

Madonna

Update - I have been on Prednisone 20 mg per day for many months. It was a miracle drug.. I move fluidly & feel full of energy - NO pain. As of this week, my Rheumatologist is weaning me off very slowly. The steroid does not let me sleep very much, I am always hungry and it causes constipation. Will be glad to be off - I think??? My Rheumatologist says she is trying to put these attacks into some sort of remission. Hoping my body will stop attacking itself. I have been thinking that this malady is hormonal in some way for years. None of my health issues started till after a complete hysterectomy (uterus & ovaries are removed). Am thinking of asking one of my doctors to let me try some kind of hormone treatment after I am weaned off steroids. I also have burning mouth syndrome - it is like I scalded my mouth/tongue with very hot soup only it never heals or goes away. This extra problem never went away even with the steroids. Glad you all posted your info. Thank you! Be careful, taking these HRTs. From what I understand, they have been proven to cause breast cancer in us older gals. We sure do not need any more problems.

Wow, so much info on here!!

First let me say I'm not from the UK. I'm from New York, however, the only forum here is child's play compared to this!!

Leslie, I searched shoulder pain and meno, that's how I found you guys!!

Ellen I read another thread in which you spoke more about your situation, now I think I a cross between the both of you ladies (symptom wise)!!

I'm 51, about 1 yr post meno. Had my first bout with hip bursitis 3 yrs ago. Was given naproxyn. I had the bursitis off and on and compared to my shoulders the hip pain wasn't too bad. Like some of you I found

hrt in the form of Bio-identical's. LOVED THEM. Foolishly stopped after 6 months... (another chapter)

Rewind, before starting hormones I had excruitiating calcific tendonitis in right shoulder. Had TWO cortozone shots last year. When I started bhrt, my bursa, tendons, libido and most of all my brain felt

like "me" again. OK I went off hormones and BAM PAIN, so much pain.

Left sided calcific tendonitis (calcium deposit's dx'd from scan) worse then right side, then right side chimed in again, then my upper arms (were the deltoids meet the bicep and triceps0 SO SORE like I ripped the muscle's on both sides.

I should add that while on the hormones I did work my arms out with perhaps too much passion. I was thin since puberty. After the birth of my second and last child at 41 I think my hormones changed drastically. Had severe depression, when that lifted I experienced some kind of restrictive lung disorder?? It lasted about 6 months, very scarey, shortness of breatth was profound. After that I was being screened for Pancreatic cancer, my baby was 2 and I thought I was going to die. I think to prove the drs. wrong I started to put on weight and more weight until I gained Fifty lbs. Three yrs later, I stopped the invasive tests lost the weight and moved on. After loosing weight was left with ugly arms, the testosterone in the hormone cream really gave me an edge with the weights, lol. SO I thought.

Sorry, for my spelling and gramer. This is my second time attempting this post. I hit the, notify me if anyone replirs to this thread button instead of reply, so I lost other post. I do feel my cognitive ability are severely limited since Meno,

PS just started bhrt again.

PLease reply.

Denise

Hi

Not sure if anyone is still following this discussion but thought I would give it a try.

When I read Lesley998's description of what was happening with her body, after finding it with a google search, I thought that this has got to be what I am looking for. I have almost the exact same muscle type symptoms, none of the other, and have had them for about 3 months. I have been to my doctor who ran some blood tests, had me to an ultrasound (thought it was a liver issue due to high liver enzyme levels from taking too mush Tylenol to relieve the pain), and could not make anything of it.

I have an appointment to see an Internal medicine doctor, have had massages, acupuncture and am seeking the help of a hypnotherapist to see if the problem is psychosomatic. I have not been able to get to the bottom of this yet and like Lesley am getting frustrated with the pain. My arms and shoulders are almost always sore, especially in the morning. I only sleep for two hours at a time and then I have to get up and walk around a bit to get the arm pain to subside a bit so I can fall asleep again. I can not lift anything with my arms, cannot reach around behind my back without causing real pain, and have to take ibuprofen every night or else the pain gets worse and lasts longer into the day.

Most days after awake for 1-2 hours the pain is still there but bearable. I find doing exercise helps and the only real time I get relief is when I get into a nice hot bath. Then all the pain goes away.

I am 51, male, and very very active. This all started before christmas 2013 when a lot of things changed in my life, including moving in with my girlfriend and her 4 kids. The 4 kids are older and great but I lived by myself for 10 years and got very used to it.

So, I am working on finding a solution and am actually moving back to my house to see if the problem goes away. Maybe it is something in my girlfriends house that is causing this, mold?

Anyways, was curious how you are Lesley and what more you have learned.

Also, any other feedback would be appreciated.

Cheers

Doug

Doug - someone always sees any post as we get notifications by email!

The more likely cause of these sort of symptoms is polymyagia rheumatica - which isn't the illness, it is the name for the symptoms caused by an underlying autoimmune disorder that causes the immune system not to recognise your body as "self". There are other causes, they should be ruled out first but most patients with this problem are likely to respond to a moderate dose of prednisolone.

It is less common in men, and you are relatively young at 51 but the guidelines say "over 50". It is also not uncommon for liver enzymes to be raised in some people with PMR.

Google this paper:

Our approach to the diagnosis and treatment of polymyalgia rheumatica and giant cell (temporal) arteritis by Quick and Kirwan

and take it to your doctor - it is aimed at PCPs to help them diagnose and manage PMR without referring to a rheumatologist. This group takes a short course of prednisone as a way of differentiating between PMR and other causes of the symptoms - if there is a dramatic improvement in the symptoms in response to a moderate dose of 15mg they take that to be pretty much diagnostic, especially when, as Kirwan describes, the pain comes back the same when you stop after a week!

I hope this helps in your search for a diagnosis - if your PCP will allow you to try taking 15mg pred for week and the symptoms improve by something like 70% it is very likely to be PMR. It is worth asking.

Hi Doug

I'm sorry to hear you have not been great - but I'm so glad my original post helped you. I know how it feels to frantically googling every symptom looking for a clue while your mind works overtime.

Good advice from Eileen who knows a lot about the subject.

My problem turned out to be bilateral frozen shoulder, brought on probably by hormonal changes in menopause - although men get frozen shoulder too! . 'Frozen shoulder' is an innocuous little name for the most painful and debilitating condition - adhesive capsulitis.It started with all the symptoms I listed, and as the adhesions got worse, moved on to being almost unable to move both arms at all for months. (Going to the loo was a nightmare!!) It lasted in total for over a year, although the peak, and worse time was for two months. You know it is frozen shoulder (FS) because of the spasms.generally, the pain is constant, nagging and dull like toothache, and worse at night. But If you reach behind you, or have your arm suddenly jerked, or make any sudden movement it brings on the most exruciating spasm and pain - the pain literally makes you feel sick and you cannot breathe or move for a few moments.I don't think this happens with Polymyalgia...but could be wrong.

My ESR was not raised at all and normal, showing no inflammation, You can get this with PR (see Eileens posts) but it is unusual I think - a lot of people will show inflammatory markers with PR.

Are you sore anywhere else? Thighs? Soles of feet?

You could get your bloods checked and take it from there. Have a look at the Adhesive capsulitis board too, also on this site.

best of luck and hope you get a diagnosis soon.

Doug, have sent you a private message.

Hi

Mmmhhh. Sometimes too much information makes it even harder to diagnose. My soreness started in my hamstrings, then seemed to move to my arms/shoulders. The less I move around the sorer they get. I am pretty sure it is muscle inflammation that is giving me the pain. Mainly because that is what the GP thinks and when I keep the blood flow up (exercising, moving, sitting up) the pain is much more bearable, like a mild toothache. I only sleep for 2-3 hours at a time, have to get up, walk around and/or sit up. This settles down the pain so I can get back to sleep for a while. Always hard to find a comfortable position.

I also do get really sharp pains in around the triceps when I put my hands behind my back. I am a cyclist and have always used the pockets on the back of my jersey. These days I have to slip the jacket off to access the pockets because if I reach around it can be really painful.

I read the paper mentioned above and am going to see the doctor about this and see what he thinks. One interesting point in the article is that they do mention that a raised APR level in the blood, which did show up on my blood test.

Your 'frozen shoulder', which I think I have heard it referred to as '50 shoulder' has cropped up in a few conversations as well. i don't get spasms but do have dull pain all the time, mild pain at night, and shooting pain if I make the wrong move.

I also believe it may be none of these. Which would be a big sense of relieve as I do care what I put in my body and man made drugs are not top of my list. So I will do what I can to try alternate diagnoses and corrective measures. I mentioned that this all started 3 weeks after moving in with my girlfriend and 4 kids. While I do not feel stressed about this environment I do believe it has effected me somehow and this may be my body telling me so. I moved back to my house today for a few reasons and shall see what happens. Even if I just believe this what the cause I may be able to make it go away. I have only been home just over a day but my last two sleeps have already been better.

Will keep posting as I learn more.

Cheers

Doug

Your description sounds very "polymyalgic syndrome" (i.e. many painful muscles). Ladies struggle to fasten their bra-straps - that parallels your being unable to use the back pockets! However, what is important here is to get all the other things that can cause it ruled out - some of them are nasty, such as cancer.

It could be coincidence that it started about the same time you put yourself under stress - and however you want to look at it moving from living alone to living in a household of 6, 4 of whom are children is stressful! PMR happens - and most people try to link it to something at some point to give it more meaning. There is nothing that links us all - except being middle-aged-ish (whether we like it or not!).

Eileen

Any bright ideas I have had pain in upper thoracic vertebral musculature pain on stretching to reach things plus severe pain in left heel really hard to walk and find it difficult bending down and getting up not taking mess but am concerned Any suggestions please

Paul - sorry, don't quite get what you're saying. Have you been diagnosed with PMR? If you are asking what we think it might be - we aren't medics, and anyway no medic could make valid suggestions online.

Heel pain could be a spur or it could be an achilles problem - more details please. Upper back pain could be myofascial pain syndrome or PMR - or a host of other things.

If you are concerned - that's what the GP is for.