Polymyalgia ?

Hello and Thank you for all of your replies I am so very grateful to you all. I currently take 100mg daily of slow release morphiene, the doctor told me to increase it to manage the pain whilst he waited for blood tests. The receptionist told me she wasnt really qualified on blood tests but they all seemed ok, except the vitamin D, which was the case last july. I was advised to buy a spray which is a high dose of just vit D, however this hasnt done anything.

Last niht the pain was so bad in my arm sockets and about half way down to the elbow it reduced me to tears.

It all started with back pain, and my neck and shoulders and finally going into my hips. I am currently waiting for a mri on my back and neck. In the meantime I just have to keep upping my morphiene which quite frankly is not helping. 

I am not sure if my symptons are Polymyalgia, but the doctor said from the symptons that the Fibromyalgia had now turned into polymyalgia. I am at a loss I just really want the pain to stop, I have got an emergency appointment tonight at 6pm now. I eally dont want to sound like I am bothing them with the same thing ut the doctors suggestion of upping the pain meds just isnt working.

If your doctor is right in thinking it is polymyalgia then all the slow release morphine in the world won't help the pain. Only pred works in PMR - the pain is due to inflammation and swelling, only reducing the swelling will reduce the pain. Even NSAIDs (non-steroidal antiinflammatory drugs) will only help in very mild cases. If the morphine isn't helping then you are putting yourself at risk of becoming dependent on morphine - it doesn't happen when the morphine is needed for pain but in this case it isn't being used up. 

I gave you the link for the paper by Quick and Kirwan, Our approach to the diagnosis and management of polymyalgia rheumatica. Print it off if you can and take it with you. If you haven't got a printer then get your doctor to google the paper from the surgery and have a quick look at it. 

It is, by the way, possible to have both fibromyalgia and PMR, some symptoms overlap but the fibro doesn't respond to pred and the PMR doesn't respond to fibro meds. And being in intractable pain is as good a reason for an emergency as I can think of - don't skimp on the tears. You have every right to bother them with the same thing if they aren't offering the right therapy. A week or two of pred to see if it works is far less risky in the great scheme of things than excessive use of morphine. It will show PMR without needing to resort to an MRI which won't show much at all in PMR. You need PET/CT for that.

 

"Bothering them" what are you mad! That's their job, to look after the health and welfare of their patients! A couple of threads back a contributor commented on an article in the paper that stated that the patients that shout the loudest receive the best healthcare. Do you not think that you are worth receiving the best healthcare.

you say that you don't know if you do have PMR, well even if you don't as I stated earlier there is one way to confirm either way and that is prednisone treatment. If the pain all bar a few remaining niggles here and there, dies down considerably after 1 or 2 days of taking prednisone then the chances are that is what you have. Anyway, if your Dr tries you on that even with only 3 days worth of medication what have they lost. Nothing. And as I said earlier, prednisone is the only drug that remotely touches PMR as it reduces the inflamation that in turn causes the pain. Who was it that advised you to buy a high dose vit d spray? I'm sure that the high dose the Dr is talking of cannot be purchased over the counter and a prescription would have had to be issued for the sorts of dosages they were talking about.

i was reduced to tears on numerous occasions because the pain was so bad, and I simply get so angry when other people experience it, as it darn near almost destroyed me. 

When you go tonight, tell your Dr that you have researched the symtoms of PMR and the very simple way to determine if that is what you have, a couple of days worth of prednisone, that is 15 mgs per day, taken in one dose am. Your Dr has nothing to lose. Be firm, and let us know how you do. 

Oh if they do prescribe prednisone I did leave it until the am before I took the dose, so I did have to tolerate one final night of pain.

good luck, christina 

Hello Just thought I would update, the doctor said the blood tests were normal so she doesnt think I have polymyalgia, I couldnt get on the bed without help and cannot move my arms she said she could not give me steroids as nothing pointed to it being polymyalgia. I told her the morphiene is doing nothing for pain and I was in tears with pain just in the surgery, as she asked me to move arms up and down and moved my legs etc. I have been given me Gabapentin 100mg but said they would make me sleepy, also prescribed me naproxen 500mg. She will write to a rheumatologist to see me, as the blood test show no elevation its not polymyalgia, so will have to carry on looking for whats wrong. Thanks for the advice everyone.

Yet another GP who knows half a story.

Approximately 1 in 6 patients who has PMR or GCA (as defined by the rapid and dramatic response to pred in combination with the clinical picture) never develops what is called the "acute phase response" which is expressed as raised ESR and CRP.

To say she "can't give steroids because nothing points to it being PMR" is rubbish - PMR is a diagnosis of exclusion (ruling out the other possibilities) based on the clinical symptoms. The blood tests are merely supportive evidence, but not supportive evidence that is 100% dependable. 

Do you have access to another GP? I had one GP who did the same to me as yours has. The consultant wasn't much better but another GP in the practice was happy to accept my description of my response to pred and said that she would have tried pred on the basis of my symptoms anyway.

I do get so angry at these doctors who can only accept the (to them) cast iron evidence from the lab. It doesn't work like that. 

I've already asked you summertime - where are you? Maybe we can point you to someone who will be more help.

I cannot believe a GP will leave a patient in such pain and distress even if they are so ignorant. If it is PMR neither gabapentin nor naproxen will do anything. It never ceases to amaze me the fuss they make about a few doses of pred to test a question but it's fine to hand out these other drugs like sweeties.

I'm so sorry Summertime - I hope it isn't too long before you find a sensible doctor.

Grrrrrr!

Oh heavens, so you are still none the wiser, yet still in great pain. My dr prescribed gabapentin pre diagnosis and I went back to her on several occasions to tell her that they made no difference. The only thing they did do was make me a bit drousy, so at least I had a few hours sleep, however, in the 2 weeks pre appointment with rheumatologist I was in so much pain that even they couldn't help me sleep. 

As I said earlier, not every sufferer of PMR has elevated ESR and/or CRP levels, infact if I remember I don't think Eileen has ever had elevated bloods. If you look up this condition on this website it states that not all suffers will have elevated bloods so for her to say "as you haven't elevated bloods you can't have PMR" is poor clinical diagnosis. Is there another Dr at the surgery, if so get an appointment with them. And see if they are more open to simply trying you on a couple of days steriods. For gods sake Gps make enough mistakes so the idea she couldn't prescribe preds for 3 days is poor health management. I know one thing if I were a Dr I would never allow a patient that could barely walk leave my surgery without trying something new, because gabapentin, although originally used for epilepsy, is still used as a pain killer and not an inflammation suppressant.

i had to wait 2 months before I got to see the rheumatologist, and then it didn't take him long to diagnose PMR. I do hope you don't have to wait that long, oh hang on Are you not still under a rheumatologist for your other medical conditions, if so contact the rheumatologists secretary for an early appointment because of additional medical developments.

other than that, make a nuisance of yourself at the surgery, hopefully one of the gps will try you on preds and if they work you will be in less pain and if they don't work you've proved them right, so what's their problem. 

Please keep us up to date with all your developments, good luck Diane, christina.

Hello Paula & Christina also hello to everyone else, thank you for your kind words.

I admit I have come away from the surgery in a very low mood I did cry on two occasions when I told this doctor that I ccouldnt stand the pain, Im dont rush to the doctor normally and yesterday I was upset because I couldnt lift up my arms to brush my hair, Im 52 years old but feel a 100.  

My husand was with me today, and he actually did say that he had read that blood tests were not the ultmate answer to polymyalgia diagnosis, and he asked about steriods once she had said that the Gabapentin would make me drowsey, he said I was drowsey enough with all of the slow release morphiene I am taking .

The doctor said that if she was to prescribe steriods and the blood tests had not flagged anything to do with Polymyalgia them a rhuematoligist would not be happy and ask why on earth she had given me them!

In her medical opinion she doesn think its pmr. When she wanted to examine me I stood up and could not lift either of my arms more than a quarter of the way up from my legs, my neck was so stiff I could only turn my head no more than 25% then she asked me to lay on the couch, my husband helped me up and she got my leg and twisted it out and folded it back up to see how much pain and how far my leg would go inwards which wasnt very far.

After the examination she said I should come back frequently to see if they have got the pain under control. I do have another appointment in three weeks when I will be seeing another doctor, in the meantime she has written a letter of referral. 

I dont really want to be taking anymore meds that make me drowsey as I already take a high dose of Amitriptyline, with the slow release oxycodone for pain from the Fibro as it is. 

I will update this thread, I want to Thank you all again you are just wonderful people, and so quick to answer.

By the way I am in the UK, Oxford. 

Thanks

Diane

Hi Diane, so pleased you have your husband to give you plenty of support. Also, I was only 53 years old when I was diagnosed this time last year. 

So the Dr says to keep going back regularly to let her know how you are, good make sure you do, everyday if need be! Hang on in there. Christina

Hi Diane,

You are very welcome!

I agree with Christine, go back daily to report. 

I don't see the logic of Naproxen, Morphine and 100 mg Gabapentin (the first rheumatologist, who misdiagnosed me with Fibromyalgia had me on 700 mg to control the pain (didn't help). 

Am thinking of you. Please continue to report back.

Paula

If her "medical opinion" is that it isn't PMR then she is somewhat remiss (IMHO) in not being concerned as to what it is given the state you are in. 

Like the others say - I would be standing at the door on a daily basis to show how little pain relief the cocktail of drugs is achieving. 

There is a very good rheumatologist at John Radcliffe but I have no idea if he does private work and don't know his name offhand. Is private an option?

Given the time of year I hesitate to suggest A&E but one lady on this forum knows exactly what you are going through - she was in a wheelchair and needed ambulance transport to get to appointments by the time she was diagnosed. I had PMR for 5 years before I worked out what it was - I also had normal bloods and the GP was being a prat. Had I seen another GP in the practice then it would have been diagnosed immediately but she was off a couple of times on maternity leave and only worked part time - I made the mistake of thinking continuity of care was more important. That's why I often suggest to people that the offer of an appointment with another doctor or a locum  is not always a bad thing. It brings in a new view.

Dear Eileen Thank you for your reply, you made me smile  (gp being a prat) 

I just rememered something this morning when I rang to see what my bloods tests had shown (and I was only following up the vit D ) which was very low in the summer when this stiff neck and shoulders first started. The receptionist at the docs said over the phone on Christmas eve that they all seemed normal but the doc had flagged that the vit d was low and I will get a letter asking me to come and see the doc, yet last night this doc who I havent seen before, said it was ok a bit low nothing to worry about  sometimes it takes me a few hours to remember things with my drugs. I will see if a letter does come and if it does, I shall ring and get an appointment and see my normal doc to see what the hell is going on.

I have woken the same as yesterday, today, when the Christmas holidays are over I may have to go back before 3 weeks at this rate. I must admit I havent seen the lady doctor before, and I dont think I shall be seeing her again, afterall it was one of the other doctors who actually told us in the first place that it might be pmr, I had never even heard of it before. 

Thinking back I noticed she seemed to be more bothered about a mis diagnosis and being off off by a rheumatologist if she prescribed steriods.

I really do not want lots more tablets, I just want someone to tell me whats wrong with me, as I feel like this constant pain isnt real to the doctor. I hope I dont sound like a hypochondriac, but thats how I think some doctors can make you feel for sure!

Thank you Paula for yur kind reply, sorry I am just getting used to this forum, so apoligoes if for not answering you directly, just figured out how to do that on here duurrrrrrrrrr. 

When I took the naproxen last night they made me feel as if I had a bit of a fluttery heartbeat, and not much of anything else.

I will have to go back again if these fail to work as I cannot function like this. I did update on Eileen's thread about blood tests that I was told a letter would come to see the doc, yet last night this doc told me they were ok 

The doc last night seemed to be more interested in who, and why diagnoised me with fibro, as she couldnt find the original letter on the system, but that was years ago! I hope they dont say I havent got that now as well.

Hello Christina I am replying to your post as I have worked out how to use this forum now  I have left some updates below. I just wanted to Thank you for your support and advice, what a marvellous forum this is.

Was you mis diagnoised then? I must admit when I look at Polymyalgia it does fit in with everything I am experincing. I was lucky that my husband had looked it up too when the doctor first mentioned the name a few weeks ago, however it fell on deaf ears with the other doctor. 

There is a former GP on one of the other forums who now has PMR - and how she has changed her tune about pred! She was always persuading people to reduce, reduce - now she has it and is on the receiving end of such comments herself she is asking "is there really that much difference between 8 and 9mg?" Lightbulb moment!!!!!!

It is very unlikely she would be told off by a rheumy for trying 15mg/day of pred. If she tried more possibly - or if it DIDN'T work at all and she continued giving it, but to try it and see if it works in the typical PMR way.

In fairness, if your vit D is VERY low it COULD cause muscle aches and pains and could be adding to it. Some doctors think in the 20s is OK but the most recent guidelines being put out by Health Trusts are more like 50 being the bottom level of acceptable. But then they should have prescribed high dose vit D which has to be prescribed by the doctor.

None of us wants more tablets - but if it is PMR and they do agree to try you on pred you may find you need far fewer of the other painkillers. PMR can hover around in the background alongside fibro and other things and then suddenly hit like a ton of bricks - that's what has happened to me twice. PMR also causes foggy brain so it might not be just your tablets.

Some people find that using an electric blanket in the morning BEFORE getting out of bed makes them better able to get going. It at least allows them enough time to get dressed! If I got dressed immediately I got out of bed I could manage, if I left it until I cooled down it was hell. Once you are able to move a bit and stretch it is does help with the stiffness, so does not sitting in one position for too long.

And don't worry about how you post and to whom - we're a nosey lot and read everything on the thread. In fact, in the "old days" it was just like a conversation and people would answer an earlier comment further down the thread - it was actually easier to keep up then I think. Your reply to a specific person always goes to the bottom anyway which is crackers!

Hello Diane, no it wasn't that I was misdiagnosed, I simply wasn't diagnosed with anything. Like you I'm no hypochondriac, infact I hadn't been to see a GP in well over 7 years, and when I first started getting the symtoms because I thought they'd go away soon, left it for a month before going to see a Dr. A blood test was taken that flagged up inflamation but ruled out rheumatoid arthritis. But another blood test would have to be taken to narrow the diagnosis. Because of staff shortages at the surgery this blood test was going to be done in 6 weeks time. I hit the roof, luckily for me I could pay so had the blood tests privately within the week. However, throughout all this time the pain and stiffness were getting worse. I went to her surgery one day and said that the original tests may have excluded certain conditions but were did that leave us, and because my pains and stiffness appeared to be joint related could a rheumatologist shead some light. She said yes and so I requested to be referred?! Which I was. Inbetween this and the rheumatologist appointment I returned back to her many times complaining that the pain etc was getting worse and that none of the prescribed pain killers were doing anything. At the very last appointment I had with her, (I changed surgeries following diagnosis), I was in so much pain that I said that I hoped the rheumatologist had the answer as I couldn't live like this and she replied that she hoped so too, as she couldn't for the life of her know what was wrong with me!!!

interestingly, on one occasion when I got myself in for an emergency appointment (ring up first thing in the morning), I did see another Dr. He looked at my bloods, asked me to do this and that and asked me to raise my arms, which I couldn't, he said that following the results of the latest bloods, those were the ones I had done privately, he wanted to see me again. In the meantime he told to keep taking the ibuprofen. I replied by saying something like, what more tablets, I'm not a pill taker, never have been and never will be, to which he replied something like, my dear christina, you may very well have to take tablets wether you like it or not! Looking back I wonder if he knew what I had wrong with me.

anyway, I eventually saw the rheumatologist and he was very through, he diagnosed me with PMR and the rest is history.

for the last month prior to seeing the rheumatologist as I said the pain and stiffness got worse and worse. The pain on many occasions was so bad that I simply cried and cried. Then on the morning before I took my first prednisone, I stood in the kitchen I thought well here goes. I took the 15 mgs and within 4 hours the pain and stiffness have faded away considerably. Then I cried and cried again, this time in sheer joy. Funny emotions do that to you.

do get another appointment with the Dr who originally thought it may be PMR and see how you fair there. I wish you all the best, but please let us all know how you get on. Christina

Hello again Eileen.

My husband agrees exactly with the thought of at least trying steroids too, a point the doctor was quick to shoot him down was that some people feel like a new person when having these, but I dont think you need them, as blood tests dont point to that fact that you even have pmr! so if I gave them you and then stop giving them then they start feeling bad again, (hmmm)  I suppose I do feel odd when going to the doctors as some people percieve fibro as you are putting it on because you dont look ill !

It seems that in the past when I have had a couple of things well you do in 5 years suffer from other things, the doctors are very quick to say its the fibro, as was the case yesterday. The doctor did make a small comment its the fibro, yet in all these years I still have the same symptons but take more and more meds as the body gets used to the dosage it requires more. 

I am surprised at the doctor you mention asking advise, I thought they would be the people who would know, funny how karma has a way of biting back sometimes 

Ive noticed how I replied last night under the full influence of my meds, you can see the mistakes in spelling when the drugs wear off slightly.

I will start knocking at the door of the doctors surgery, and I am just waiting for the letter about my blood tests, if there is nothing wrong with them the receptionist wouldnt have been told to send a letter, the one she told me about before xmas. All very confusing, the vitamin D I was told when diagnoised with very low that I could buy on line as the nhs wouldnt allow it to be prescibed so I bought Dlux 3000iu which I had to take twice daily and on the 6th day I was to take three shots of it. Its a spray you put under the tongue. 

The doc at the time said when people have got their vitamin d level back to normal they are cured of pain and he had seen people on walking sticks who had a miraculous recovery and no longer were ill even when diagnoised with rickets and fibro. I came away thinking is this spray going to change my life?  I would have swopped anything to be back to how I was before being ill with a brain viral infection. 

After 3 months of taking it, I havent noticed a change and I was now feeling worse and the pain so much more intense than when I had firstly gone with these symptons of neck pain, arm pain and hips etc that was in the summer time.

Hello Christina

I read your post with admiration for you. I know its very easy for these doctors to treat us like a number, if you get my meaning.

When I went to the dr's yesterday I couldnt move my head to as far as 25%  left or right, and my shoulders felt locked up. My arms she wanted me to lift outwards up from the side of my leg, I could only manage to get under waist height.

I reallyfelt sure she could see how much pain I was really in, especially that I broke down in tears twice in her office and said I didnt know what to do.

However I was knocked back by the blood tests, which is where my husband stepped in and told her he had done some reading on the subject when ou rnormal doctor had suggested PMR in the first place. He did explain that some sites had said its not always a diagnosis when if the blood tests didnt show anything, however she told him that is how dr's can then say for certain its 100% per cent PMR. This of course was a real blow to me hearing that. 

This all really started last summer when I got up one morning and my neck was so stiff, almost as stiff as one of those tall hats they men wore in the 1900's. It was at this time that the doctor suggested Vit D spray 3500iu per week because my blood showed that.

Yesterday the doctor said all the kidney function and other stuff was ok, so no need for her to think f PMR at all, but, she did say she could see why my doctor would have cause to think it could be that, but without eveidence of blood work its a No from her.

I will now have to wait for the Rhuematologist appointment which I dont expect will be a quick one. In the eantime I will go back to the doctors and keep letting them know how I feel. I want to thank you ever so much though for your kindness in explaining your time with so much pain too. I am grateful, if I didnt know that others have this awful pain too I would be certainly more upset at still not havng an answer.

Thank you again 

Diane

Hello diane, don't forget when you get the letter with your appointment from the rheumatologist it will contain their secretary and dept phone number, try ringing them up to see for cancellations, you never know you may be lucky. Hang on in there, remember book an appointment with the Dr who thought it was PMR and see how you get on there. Keep us all in the loop. Good luck, christina

Where did you meet these doctors? In airy-fairyland? 

The NHS DOES allow prescription of vit D for very depleted patients - and although yes, it can have that effect on people it isn't half as common as PMR crippling people who get up and walk after a few doses of pred! It takes more than a couple of doses of vit D - unless you are PRESCRIBED the very high dose stuff.

As for the statement "it's how docs can tell 100% it isn't PMR" - what a load of tosh! Noone can say 100% either way on the basis of blood tests. It requires clinical skills and the blood tests are an add-on, not essential at all. Being unable to raise your arms above shoulder height is one criterion - you couldn't even get there! The response to 15mg of pred is pretty much diagnostic - if they are willing to try it. And there I had been thinking things were improving a bit. Obviously not in your practice. If you can't get sense out of other GPs in the practice you need to find another or go to a sensible rheumy privately - yes it costs but I know a few patients who say it was the best couple of hundred quid they have ever spent. A good consultant will also transfer you to their NHS list. I can absolutely recommend someone in Ashford, Middlesex. He never looks at lab tests, he looks at the patient - an international expert.

I've just seen your dose of vit D - 3,500 IU/WEEK???? I take more than that a DAY! You need something like 60,000 IU per week to get to a decent level in a couple of months and that comes as high-dose tablets from a German company called Dekristal (I think). I take 800 IU/day just in the calcium and vit D tablets (Adcal or calceos) we are all on when on pred. That's 5,600 IU just anyway. I also take 5 x1000 IU tablets a day in the winter (H&B 25mcg, Boots also do good high dose tablets for a decent price). 

I dunno - anybody would think we WANTED to be ill. And don't worry Summertime, we aren't in pain (well, I'm not). I'm on an adequate dose of pred now and have a brilliant GP who works with me not against me. SHE keeps telling ME to slow down my reduction!!! 

Hello Eileen I think I must have just got someone who may not or only believes in lab results there are doctors like that. Unfortunatley this was a emergency appointment and she is not someone I will see again, and if I dont get anywhere with the dr I normally see then I will make appointments with others and see where I go from there. 

At the moment I just want to be pain free, its bad enough  have fibro pain 24/7 as the morphine just demands more and more when you have been on it for a long time. 

 I will chase this and not be pushed into a corner.

Thank you for your help, you are so helpful all of you on here, thanks 

Diane

x

Hi Christina

Thank you for your message, yes I will do that. Infact I had to do that several times when I had my gallbladder removed.

Regards

Diane