PMR symptoms but not diagnosed

[Alsdouble]

This has been with me for about a week. Upper legs like lead, painful, even the weight of my body, which is not extreme, across the upper back, should and upper arm movement. The doctor took blood samples but these came back satisfactory. He prescribed Ibuprofen, 3 a day. Not great for me with a Hiatus hernia. A different doctor suggested Tramadol which strikes me as absolutely sledge hammer doctoring. So I'm stuck with the symptons, so what now?

[DorsetLady PMRGCAuk volunteer]

Hi Alsdouble,

My first ESR blood test came back as satisfactory - unfortunately later I found out it wasn't! But because of it PMR was discounted and therefore I wasn't treated. 18months later I lost the sight in one eye through undiagnosed GCA.

Ask what the actual figures are, the satisfactory comment is just someone's opinion! And even if they are satisfactory it doesn't mean you don't have PMR, many don't have raised figures - symptoms are the key.

If you get no relief from the medication you've been prescribed, and if it's PMR you won't, then you need to go back with evidence and try and find a sensible doctor who will listen to your concerns.

[Kneesup in reply to DorsetLady]

thanks for the email, I have used tramadol a lot and never found any problem with it, I have now changed to pain patches which you might find better because you can control the amount that you have but as for tramadol I would start low amount. If I can assist you any further please let me know. best wishes, knees-up.

[CT-5012]

When I started with PMR my crp was 0 esr within normal limits. CRP rose to 6 when GCA started. Nuf said? 😫

[SnazzyD]

Hmm, rotten for you. Well, nobody can say here whether you definitely have it or not, just whether it sounds like you have from your description.

As DorsetLady says, the pain killers likely won't be the magic relief if it is. If you are not happy with the hiatus hernia and Ibuprofen and probably rightly so, go to your pharmacist and ask their opinion. If they say it is a bad idea, you have some good backup that GPs tend not to argue with. If Tramadol doesn't work in a few days, that's more strength to your argument. It makes some people feel mighty peculiar though. If you feel galvanised enough, you could request a deal - that in the absence of other medical contraindications, two weeks of Prednisolone isn't going do you any harm and if it works like the wizard's wand that many with PMR find, it'll likely be the treatment you need. The hiatus hernia might make you need for stomach protection very necessary or ask for enteric coated. I gather the cost is about the same as ordinary Pred plus the stomach protection meds.

Have a read of this that talks about ESR readings and diagnosis. I had only GCA at diagnosis and even with my eyes going, my ESR was only 16 and still in the normal range. I believe that was high for me rather than the text books because past readings never got above 8 even when I was ill with other things. With Pred, I'm back down to my usual 4.

rcpe.ac.uk/sites/default/fi...

[PMRpro Ambassador]

Take a copy of this paper to your doctor and ask them to consider using the "pred sandwich" diagnostic approach - PMR typically responds quickly to a moderate dose of pred but not to other painkillers, even opiods:

rcpe.ac.uk/sites/default/fi...

Quick and Kirwan include raised ESR/CRP as a criterion for PMR but in fact up to 1 in 5 patients have levels within normal range, that doesn't mean they are normal for them of course, my normal ESR is 4, if it was 20 it would be very high. For me! So you could show them this:

ncbi.nlm.nih.gov/pubmed/884...

Your doctors may be terrified of using pred - so show them this article:

practicalpainmanagement.com...

It never ceases to amaze me how they will hand out opiods like sweeties despite their addictive potential but are terrified of pred!

[jinasc]

Follow this link and read and download.

pmr-gca-northeast.org.uk/as...

BSR Guidelines to Diagnosis and Treatment of PMR.

Then when you know about it, you can ask the questions................

[B2WC]

Hi Alsdouble, If the gp giving you Tramadol, ensure you are not subjective or allergy on Opiod and also perhaps use it if and when necessary, in my opinion the lesser you use it the better..because for some people it can be addictive. I suffer really bad through the state where I am housebound and some time its paralysing me..I try really hard (if I may say-I detest Tramadol) perhaps try cocodamol (codeine and paracetamol) but some people get constipated with that, so they have to consumes quite lots of water (2 ltrs a day if you can - its good for Fibro people) and food contain lots of fibre (bran flake etc) if ibuprofen does not help what about asking for diclofenac - but if your stomach is sensitive like mine - take esomeprazole 30 minutes prior taking either Ibuprofen or diclofenac as these both are great to reduce inflammatory..have you ever try reflexology - its fantastic for fibromyalgia..as its work on the zone need to be free from the blockage - so will reduce the inflammation. try to reduce food such as: aubergine; tomatoes, any drink with soda, gluten..basically any thing that can cause inflammation in our body, I can walk now by following some guidance..also in the morning I do not feel as bad as a year ago..I am taking lots of supplements as well, ashamed that NHS do not cover that cost. Good Luck, I hope you coping and feel lift up

[piglette in reply to B2WC]

Hi B2WC, if you require supplements I am sure the NHS would pay for them, for example my vit D and calcium is on the NHS. Has your doctor recommended the supplements? In the case of most supplements they are very good way of boosting the suppliers coffers and you would be better off eating a good, balanced diet.

[camperqueen]

Hi Alsodouble

I take Tramadol but for RLS. It was given to me for pain but then I realised my RLS was better, later my consultant said this was ok, and I still take 200mg a day, divided in two doses, and 4mg Ropinirole. I get by quite well on this, though would love to give up the Tramadol. When I have tried, it has been too traumatic , no sleep, twitchy and so restless, that I have given up trying. Hope you find something to help but don't try Tramadol unless you are really desperate.

[Kittyletmein]

Whilst investigating my medical issues I was moved from ibuprofen, which I had taken on and off under self medication for years for pain, and put on a low dose Tramadol. Like you it seemed to be a huge step and a pretty scary, although I was desperate as the pain was not just constant but interrupting my sleep. Now days I manage the amount of dosage relevant to pain vs activities I need to accomplish each day. I would ensure you share your concerns with doctor but also bear in mind that we each react to different meds and differing doses. Taking what works for your body is what is important and it is usually a case of trial and see.

Wishing you luck and less pain.

Kitty

[Jayne68]

I have tramadol and when the pain is bad, I do take them. In my opinion they are not as strong as they seem, in that it takes the edge off but does not take the pain away. The only meds that does that for me is morphine.

Which I do restrict and only take when I really can't bear it.

[Alsdouble in reply to Jayne68]

Interesting replies from many people. Looks like a game of chance, sadly. (Are we surprised?) Second blood test going in tomorrow. It aint going away.

[Hidden]

hello Alsdouble I use tramadol about 17 months and is really helping me with pain.Gabrielle x

[Angel153]

Hi, someone was kind enough to message me and ask for my two-pennies worth re: tramadol, as they know I've had experience of this painkiller.

I'm extremely chemically sensitive, and I find my system reacts badly to a ton of drugs that others have no apparent problem metabolising.

Fo me, the effect was almost instant - violent headache followed by projectile vomiting.

Ditto Fentanyl and the other opioid patch, although opioids are generally pretty much the only family of analgesia my system will tolerate sans head pain (sinuses, migraine) and projectile vomiting. The patches were awesome for the pain, but I couldn't live with throwing up several times every day, especially as I'm on long term (i.e., for the rest of my life) steroids due to shot adrenals. Throwing up my hydrocortisone is actively dangerous for me.

All codeine-based drugs affect the first loop of the small intestine. They paralyse it, hence the constipation people experience. Magnesium citrate helps counteract that.

If I can be of any help, just holler,

Best wishes,

Angel_153

[Alsdouble]

At the moment I have rejected it. A the moment.

[allwritemel1967]

Hi, well it's funny you should post this now. I've been saying for ages that I suspect PMR (match symptom for symptom) but the doctor ignored me - it's in my mind, according to one of them). Last week I decided to take matters into my own hands - IF a rheumatologist said it was not PMR I guess I'd be stuck with that and accept something else was going on. I went to my doctor YESTERDAY to ask for a referral ... he was WONDERFUL - only the second one to actually listen, empathise and try to discover what's going on (and she did get to the bottom of one of my two major issues, too). I felt kind of emotional and said I was wasting his time but he reassured me he is there to help. Describing my symptoms he said, "Why on earth have they not tried treatment on you? I'm thinking Prednisolone - you may have a condition called -" PMR? "Oh, you've heard f it. You match symptom for symptom. OK, I'm going to start you on Pred 15 mg a day to batter your body - no naproxen (oh dear!) - trust me, if it's PMR you won't need it ... " I told him all the other doctors refused to try me on anything. "I'm forward thinking and we've tried everything else. If this doesn't work - or you feel too ill on it, I'll happily refer you to a rheumatologist - it's a very good move and a reasonable request in the circumstances. Let's see what these do first. I'll see you in a week and we'll go from there."

I took the first dose today and it's nothing short of miraculous! Even my eyes stayed open longer (closed now but I have not had this much sight in 3 years) and I haven't needed naproxen at all! First time in years! The only side effects I'm suffering are very bearable (I've had worse with Tramadol which I. simply cannot take. Very, very slight light headedness (like I'm very tired), slight nausea (ginger and/or arrow root will help ...) and a bad headache I'm tolerating it extremely well so far. If this is the worst it gets (and I imagine the first dose would be the worst) I'll be absolutely fine - I even have energy!!!!!!!! I stayed awake the whole day!

I guess what I'm saying is keep fighting your doctor. The right one is out there! - PMR doesn't always show on blood tests. Thanks to the wonderful people on this forum I've finally found a human doctor who is willing to try me on Prednisolone for a week ... if it stays like this, he said we have our answer. I'll pray you find a doctor that will listen and provide you with the right treatment. Hope you can read this as my yees are closed. Let us know how you get on - the people on this forum are fantastic.

[Grants148]

Dear Alsdouble,sorry to hear you are feeling so unwell,it does sound as though you have PMR.lhad a lot of pain and stiffness in my legs arms shoulders and neck last year and my doctor sent me straight away for a blood test which detected a lot of muscle inflammation. I was prescribed prednisolone straight away which made me feel much better after a couple of days.l think you need to see another doctor who hopefully will make sure your symptoms are thoroughly checked out. I know how awful you must be feeling and it really makes it difficult to carry on as normal , l do wish you all the best for a good outcome.

[Alsdouble in reply to Grants148]

Interesting. They do, doctors, make you think of buying the necessary drugs online, which isn't a good idea but: maybe it's a cost thing.

[PMRpro Ambassador in reply to Alsdouble]

Prednisolone and prednisone are cheap as chips - even when you buy them yourself.

[Alsdouble in reply to Grants148]

I am on my 2nd doctor already.

[Teenyb1977]

Hi I take tramadol 4 times a day, I take 1 capsule at a time along with 2 paracetamol as it seems to work in conjunction with each other. The only time I've had any issues with it is when the gp put me on 2 capsules 4x daily. I was violently sick and felt awful, that was at the very beginning of being prescribed it. I have been on it for 3 years now, if it wasn't for the medication I wouldn't be able to even get out my bed due to pain. I hope this helps xx

[piglette]

Hi Teenyb, if Tramadol and paracetamol help the pain, it is highly unlikely it is PMR it is helping.

[sporan]

Hi Alsdouble,

I have recieved an email from health unlocked asking if I have any advice about tramadol.

My conditions are epilepsy and stable brain tumour in left temporal lobe and as such have not been following this line and have to admit my total ignorance of the conditions of which you suffer however I had used Tramadol for pain relief from both headache and arthritic pains for around 5 years and found it really helpful with pain control but I only ever used it as top up to regular paracetamol and then only when really needed

a) because it tended to make me sleepy at first,

b) because being as an opiod it can become addictive however I found that it was very effective and only stopped using it last year after I was changed over to codiene sulphate during a change over in epilepsy meds because of the risk they could intereact and cause seizures.

The short bit really is don't knock it until you have tried it after first making sure your doctor/consultant has checked against any interactions or allergy.

Start with a low dose and use only what you need for that particular incident or increase in pain.

I can't use anti inflamatories unfortunately because of having ulcerative colitis which is thankfully currently in remission.

A bit long winded I guess but hoping this is of some help to you in your decision.

Kind regards Sporan

[Tarzan2]

Hi docs did my blood again last week I was diagnosed with pmr in Feb now bloods come back satisfactory doc said it can't be pmr but referred me to muscular clinic

[PMRpro Ambassador in reply to Tarzan2]

Are you on pred? Then your blood markers SHOULD be normal and that shows the pred is doing its job, combatting the inflammation. If there is no lasting inflammation (the pred clears it out each day) the liver will not produce CRP in response and the ESR will not be raised (raised proteins in the blood are what increase the rate at which the blood cells fall to the bottom of a tube).

Sometimes I really worry about the basic knowledge of some doctors...

[Tarzan2 in reply to PMRpro]

No they put me on them then another doctor took me off them now I am in pain

[PMRpro Ambassador in reply to Tarzan2]

I do hope the musculoskeletal clinic can help. I take it the pred helped? And perhaps your doctor doesn't know that up to 20% of patients with PMR don't have raised bloods ever and some people lose the raised markers once they have been on pred. No-one knows why - it is just so.

[Tarzan2 in reply to PMRpro]

What does the muscle clinic do tho

[PMRpro Ambassador in reply to Tarzan2]

Depends on the hospital. Usually they assess the patient and then direct them to the most appropriate therapy/specialist. My experience of them was not good - he claimed there was nothing wrong with my back or me as I could touch my toes which he couldn't. I couldn't raise my arms and a lot of other PMR things but that was immaterial...

[Tarzan2]

It scares me

[PMRpro Ambassador in reply to Tarzan2]

What scares you?

[Tarzan2]

It scares me that I was diagnosed with pmr now they say it's not that I got to go to muscular clinic

[PMRpro Ambassador in reply to Tarzan2]

No point being scared - they may say it is PMR on the basis of the response to pred or they may find another cause for the symptoms and be able to treat it better. Which is the point of the exercise after all.

Write down all that happened before, during and after pred so you have the info to hand when you do get an appointment. As I said before - maybe you will meet someone who does know that up to 20% of patients don't have raised blood markers but it doesn't stop it being PMR.

[Tarzan2 in reply to PMRpro]

I was on pred for about a week then another doctor took me off them