Going down a different route

Hi all, a wk of pain especially in neck, shoulders any joints my gp decided she would go by rheumatologist letter of fibromyalgia so been started on duloxetine 30mg to see if this makes a difference so she can actually say polymalgia or fibromyalgia for sure. I just think another tablet and more horrible side effects. So for now it lots of hot water bottles, microwave wheat bags and arnica gel again.

[powerwalk]

Good luck, hope you find some relief. You could actually have both pmr and fibro. I have both as do some others here, its hard to find whats actually the trouble at times. Let us know how you get on.

[SheffieldJane]

I hope this change of direction is helpful. You suffer such a lot.

[PMRpro Ambassador]

Not sure how she thinks that is "for sure" - pred working is more likely to rule out fibro than duloxetine ruling out PMR ... But maybe it WILL help - and that is all that really matters.

And as powerwalk say, you can have both,

[Sharitone]

Good luck, K! Here's hoping you get some relief soon!

[Pixix]

I have both fibromyalgia & polymyalgia. One my one visit to a rheumy last year, she checked for fibromyalgia again & reported to my gp that I have a ‘full house of cards’! Fibromyalgia has a set of pain points round your body that doctors prod to get a response. 18 points & if you have 11 it’s fairly conclusive. I have 18 pain points. From a personal standpoint I had fibro for 12 years before polymyalgia & I can distinguish quite easily. I have no pain in shoulders & neck with fibromyalgia, but the feeling that somebody is sitting on shoulders & back of neck & pushing down & pain we’re trying main symptoms of polymyalgia…to start with. There are quite a few differences & a GP should be able to diagnose polymyalgia, but I think a rheumy is better to diagnose fibro, as they ‘know where to prod you’!! Both diseases are lousy, but I prefer fibro as it doesn’t have the steroids & tapering complication! I’ve never been put on duloxetine, unless that’s a trade name for Gabapentin or Pregabalin, both of which I’ve tried. Hope this helps a little. I searched for the diagrams which show the pain points, but they aren’t available now. I think too many people were pressing the points themselves & convincing themselves that they had fibromyalgia before they even saw the doctor/rheumy!! As you’ve seen a rheumy & presumably he/she prodded you in all the right places, then diagnosis of fibromyalgia should be easy! I do think that with fibro, though, you do ache & hurt all over, so it does affect the shoulders & neck area, thinking back to when I had only the fibro, also if you are tense, or stressed, then those areas will be painful, even if you have neither!!

[PMRpro Ambassador in reply to Pixix]

Many of the trigger points listed for fibro are common with trigger points for myofascial pain syndrome. I had 11 fibro points - and since then have probably developed more, but the pain all goes with the right targetted management and the right dose of pred.

[Bachfugue in reply to PMRpro]

Interesting. Can you please expand on … ‘but the pain all goes with the right targetted management’ ?

[PMRpro Ambassador in reply to Bachfugue]

I have written repeatedly (and recently) about the various management approaches for myofascial pain syndrome that I find useful including needling and manual mobiisation of trigger points by therapeutic massafe or physiotherapists.

healthunlocked.com/pmrgcauk...

[Pixix in reply to PMRpro]

So...are you saying that the treatment for myofascial syndrome should be used for fibromyalgia, please? It's certainly not recommended as far as I've read, and the two are treated as completely different medical issues. If I read you right, you're saying that you had fibromyalgia, as you had 11 points positive, but you were then diagnosed with myofascial syndrome as well as fibromyalgia...& following your current treatment for myofascial syndrome, the fibromyalgia is completely under control??? I have seen your comments about treatment for myofascial syndrome many times, but Ive not been diagnosed with that, so didn't think of trying any of them. Hm...food for thought.

[PMRpro Ambassador in reply to Pixix]

No, not at all. What I am suggesting is that the claim that this is fibromyalgia on the basis of trigger point counting is flawed since the trigger points can also be part of PMR and MPS, especially in combination.

What I said was that I could identify at least 11 trigger points - but ALL the pain was improved in under 6 hours by 15mg of pred. Which suggests it was VERY unlikely to have been fibromyalgia. And with the same management, those trigger points are still reduced.

Even the guy who propagated the fibromyalgia diagnosis has expressed regrets at the way it is used - it really is often used as a get out by lazy doctors as by saying that there is a get-out for anything more than a few tablets that might or might not work so if they are lucky the patients will stop demanding.

Remember I don't live in the UK and read a lot of German research that is often ignored in the English-speaking world - and I don't really know that fibro is as big a thing here as it is in the UK.

[Pixix in reply to PMRpro]

Yes, sorry i misunderstood. I think there is movement afoot to change things. When I was diagnosed initially the body picture with the points marked was everywhere you looked and was the main and only diagnosis method. Now the pictures have disappeared completely and they are not using it any more here. When the rheumy examined me she prodded far more than the old 18 points, and considered other things, I believe. As I said, she reported 'a full house' of pain points, but did not give a statistical number as would have been done 10 years ago. The steroids do not help any of the pain that I get from fibromyalgia at all. I was lucky to have quite a gap between the two diseases so I can tell one from the other! i do believe there was a time when fibromyalgia was over diagnosed here...if the doctor did not know what it was, and felt it was similar to fibro, then that was the diagnosis. As you say, lazy doctors, perhaps, but maybe some who didnt know so much. I think referral to a specialist dept for fibromyalgia didn't happen much at all 15 years ago. I was lucky and had a great GP who referred me for second opinion, and then i was referred to a Pain Clinic. I cannot believe the number of people who have it here now, but I suspect many of them don't!!! I do believe that some still think it is in peoples' minds, and not a 'proper' disease, but the opinion is changing, and I think it happened because of many mis-diagnoses. Right - must go - chores to do, even on a Sunday!! Sunny here now, but very stormy indeed. Sorry I misinterpreted your words, only 8 hours sleep in 3 nights due to sciatica and very weary!! Hope you are coping well, and keeping as fit as possible, S x

[PMRpro Ambassador in reply to Pixix]

Much what I would have said had I expanded further, There is something that is fibromylagia - but it is mixed up with other things that COULD be managed much better if it were diagnosed properly.

[Pixix in reply to PMRpro]

Absolutely!

[Knit11 in reply to Pixix]

I also have both and can attest that Fibro pain is distinct for being located in certain trigger points. Mine have always included my shoulders but also my neck and, seldom, my hips. The pain may radiate to a larger area but is different from PMR's pain that spreads across muscles and joints.

[Pixix in reply to Knit11]

I quite agree!

[Hidden in reply to Pixix]

Duloxetine is anti depression medication which is used for fibromyalgia pain but at a different dose

[Pixix in reply to Hidden]

Similar to amitryptylline then, probably, I guess, maybe!

[Hidden]

Hi, I was already on 90mg of Duloxetine plus 25m of Morphine slow release patch along with 8 x30/500 Co Codamol and 10m of Amitriptyline when PMRkicked in, I also have Osteoarthritis and Bursitis in both hips, so sick of all the pain and nasty side effects can't take much more 😰

[Hidden]

I was given amitriptyline few months for pain but didn't take them cause with pred and 15/300 of co codamol I was waiting to see if I could manage pain without another tablet or upping pred

[sandydame]

This is not a reply but just more General and that is I am in the United States and when I carefully read all of these very helpful post and answers to the Post I am having to go and look up time and time again the name for medications that I believe are just different in the UK than they are in the u.s. is there any post on healthunlocked that might have a list all the names of these medications that are equivalent in the US and the UK. It would be so helpful. Hope I don't appear just lazy butt I've tried to keep track of them and read with my computer and in the other hand I have my phone to try to look up the various names other medications. I have had PMR for 6 years. And I have stenosis in my lower spine for which I am prescribed hydrocodone with acetaminophen twice a day as I also have i t p which is low platelets so I'm unable to take many medications that might cause bleeding. When I'm in any pain that's more unusual than the ordinary as you all know I got more easily exasperated which does not help any but not to say that I don't so hardly appreciate the information that I get here and even the consolation that it is to know that these posts are available at any time I can be so helpful. Thank you for hearing me maybe what I'm asking for is not possible or reasonable or medically the best way to do things that is attempting to sort out the different names for the medications in the UK and the US. Thank you so much. There was probably a better place to post this but I'm actually in a fair amount of pain even as I'm writing request so please let me know.

[PMRpro Ambassador in reply to sandydame]

I'm sorry - but actually just putting the name you don't recognise into your search engine will tell you in seconds. It will take you as long or longer to look up a post with them listed. Added to which, I, DorsetLady or MrsNails would have to spend a lot of time looking things up and compiling it - because we can guarantee that the one we missed, would be the one you want! MrsNails has done a sterling job of doing the FAQs and she's been on it since way before xmas! If you keep a little notebook and add the drug as you look it up you will have it to hand and it will take you a few seconds each time.

I always use the substance name which is what we tend to use in the UK - I also have to look up the brand names US correspondents tend to use - I know Tylenol is paracetamol/accetaminophen but not what the numbers mean. I know it isn't helped because often people spell them wrongly - I can make an educated guess quite often but not always!

And if all else fails - reply and ask,

[sandydame in reply to PMRpro]

Thank you very much for your response. I understand what is involved. I was hopeful that some such thing might already exist. I will keep my notebook handy. Be well.

[DorsetLady PMRGCAuk volunteer in reply to sandydame]

Hi

You might get more responses if you asked this as a new post - it’s is likely to get lost in this thread. There are a couple of us who read all posts, but not everybody does.

There is a post on abbreviations- linked below - which may be a starter for you.

Those of us that have been on here a long time try and remember to quote different drug names, particularly the most common ones - but not everyone does.

As the charity is UK based most of its members are as well, so inevitably the names used are most common in UK.

healthunlocked.com/pmrgcauk...

If you started a new post as suggested - perhaps those of us who helped put the FAQs together might be able to come up with a list of drug names similar to the abbreviation one.

You can copy and paste your comments above into a new post quite easily.

[sandydame in reply to DorsetLady]

Oh dear I wrote a rather long involved response needing help with my two conditions of PMR and ITP it was involved and took some time to put down. Before I completed it I don't know how but I lost it. What can you tell me how to retrieve it I do not think that the response went through to you. Sorry I'm not especially good at navigating the site I'm 82 and working on getting better at this. I wrote it this morning at about 8:30 a.m. us time and I'm hoping it either went or I can retrieve it. Thank you for any help.

[DorsetLady PMRGCAuk volunteer in reply to sandydame]

Unfortunately HU doesn't have the facility to automatically save posts replies as you are writing them…as many of us have discovered over the years…so I’m afraid it’s probably disappeared into the ether…..If you are going to write another longish post or reply can I suggest you draft it in word, or notes or whatever you have on your device…and then copy and paste on to forum…

It’s very frustrating, but it’s what it is.

[PMRpro Ambassador in reply to sandydame]

Is your response directed to the author of this thread? If so - don;t worry as they have left the forum