fibromyalgia and other pain - long sorry

[MyVisionsComeFromSoup]

not sure how to word this so it makes sense, sorry.

I was diagnosed with fibromyalgia a few months back, but I've been ill for a number of years, and fobbed off a bit by the GP with "try this other painkiller, and add this one". So, I know fibromyalgia is pain without injury or inflammation, and I was already taking pregabalin to dampen down the nerve endings (from a previous diagnosis from the neurologist of "hyper sensitive nerves" ). So that helps with some specific pains and muscle twitches, and amytriptiline is great for getting to sleep at night, not so much for staying asleep past 4am though.

But, I was also taking naproxen for pain in my neck and shoulders. Last visit to a (new to me) GP, he queried why I was taking naproxen, said I should be cutting that out (and did agree I could up the pregabalin, but didn't let me have more than a few extra tablets, so I'm still on the original dose annoyingly - he didn't seem to think I should be taking that for fibro ). So, I've stopped the naproxen, and now have pain and stiffness in lots of joints - fingers, hands, wrists, one elbow, one hip, one knee, back of my heels, big toe.

What I don't understand, is that if I have no inflammation (as per the rheumatologist), why do I have pain that responds to anti-inflammatories? And how do I explain to the GP and consultant that I seem to have different types of pain, and that actually the naproxen is helping me to be able to be able to do day to day stuff (like chop veg and carry pans of pasta to the sink and type - this is taking me a very long time to do as my fingers are stiff, and I'm having to correct loads of typos as I go).

I've mentioned to every doctor I've seen over the past three years that my left thumb is numb and I can't control it very well - the rheumatologists response to my description of being the old lady in front of you in the supermarket queue who can't get coins out of her purse was "oh, don't worry about that" - FFS I'm 46, I should be able to pick a coin out of my purse, rather than having to use the self checkouts where I can scoop the coins in one go, or having to get my card out of its slot well before it's time to pay, because it's bloody hard to manoever. I DO worry about it, as it's not normal.

How do I need to word things so that doctors understand me? I know it looks bad asking for more painkillers (although I can't take anything codeine-like as it makes me throw up), but I just want to know what is the best combination of painkillers to be taking to stop me being in pain without coming up against "you have fibromyalgia, of course you think you feel pain, but honestly there's nothing really wrong".

None of this is helped by having bad fibro brain fog, plus balance problems which also cause brain fog, and "losing" words - basically I come across as being a bit drunk . And trying to pretend in public that I'm actually OK, which again isn't helpful.

My question basically is this - can you get pain which is helped by anti-inflammatories which ISN'T caused by inflammation, and how do I explain to the GP/consultant that I seem to have different types of pain going on, without sounding like i just want more drugs.....

Thanks for wading through all this, if you have. BTW, as I know it comes up a lot, my B12 is mid-range, am supplementing vit D, thyroid is mid-range, diet is not great, but I'm working on it, weight is too much, but am working on that too. All the obvious stuff is "normal".

Hi myvisions
Have you had your vitamin D level actually measured ? What is your actual dosing regime of Vit D how many IU daily , ? , oil filled capsule ?, tablets ? oral spray ?

  The reason I am asking these questions  is because it has been found that a lot of Fibromyalgia type symptoms  can arise  with Vitamin D deficiency.   Does your sternum hurt  , if you press with moderate force,   does your front of your shinbone  hurt if you press with moderate force. .    

             Although you may be taking vit D ,   we all have different responses ,  some hardly at all , others much more .  Have your blood levels been measured after you have been on your regular dose ,   after at least 3 months..?    

 I would suggest that  if your level is below 75 nmol/L  at the very minimum ,      you could very likely see some improvement in your pain levels ,  if you raised your level to over 75 ,   and in fact  much better  to levels around  120 - 140 nmol/L . 

       I am assuming you don't have any rare conditions such as sarcoidosis , granulomas disease, primary hyerparathyroidism. 

 Hope this  is helpful.   

         Get  back to me  if you need  any more info. 

BTBH

.

vit D was 53 last September, I started taking 2000 iu per day (gel capsules), saw the consultant in Feb who was happy with that, I ran out and bought 5000 iu by mistake, so I'm taking those three times a week, although both the the GP and the consultant wanted me to stop in April.

I had more blood tests done in March/April, but I don't know the levels of those as they were done at the hospital, and I haven't had a copy of the results, apparently "if you haven't heard from the consultant, they'll be normal", but, yes, doctors "normal" and what's best for the individual aren't always the same thing . I see the rheumatologist in August, so will ask then.

I do have pain in my sternum and front of shins if i press on them, but no-one's ever asked about that - having googled, that's going on my list of things to ask about though, thanks for that.

I'm wondering if I should try increasing the vit D to see what happens, I'm a bit wary though, as I was taking the max the consultant was happy with, but I think the maximum safe level is quite a bit higher than if I was to take, say, 5000 iu a day.

Oh, and your list of stuff you assume has been checked out, I don't know, would any of that show up in the standard lot of blood tests a rheumatologist would do? I'll have a google, and see of any of them sound likely though.

myvisions, try sitting in the sun for 30 min each day with good skin exposure and no suncream and see if that helps. Your body is supposed to be much better at converting vitamin D from sunlight rather than tablets.

Are you seeing a chronic pain team?

I was originally diagnosed with Fibromyalgia, then SLE, then Sjogren's and just recently Rheumatoid Arthritis so it is possible that tests/examinations will show something else over time. I felt at my worst when I was first diagnosed and gradually better, so I think sometimes regardless of how awful we feel it can take a while for our bodies to show what is really wrong with us.

I hope you get some answers soon and start to feel as well as possible. Do keep pushing for specialist appointments and don't just give up.

visions can you just go back and tell them you're in too much pain without it, and that they can check your liver/kidney function regularly but you want to continue taking the naproxen for now? Most doctors attempt to take me off naproxen but my joints hurt too much without it! Same as you I supposedly don't have anything inflammatory but it makes a huge difference. I have fibromyalgia, hypermobility syndrome, tmj dysfunction, dystonia in feet. Also have the losing words/drunk sounding issue BTW. It's very frustrating.

Sounds like you might need some nerve conduction studies for your thumb.