Chronic pain syndrome?

[icclemunchy]

Anyone else suffer from his? After nearly two years of pain and fighting to get refered to someone who could help a rheumatologist has said today that she thinks I just have a chronic pain syndrome and there's nothing she can do for me. I've been discharged with a referral to the pain clinic. Is this it? I'm 28 and can't even do my own housework, my partner and kids are suffering and quite frankly it bloody sucks.

Where do I even go from here? I've seen the pain team before, they just gave me lots of painkillers and whilst it eased the pain aspect slightly I have so many other symptoms which no one seems interested in. My GP is no use and just keeps telling me I. Depressed. I'm fed up but not depressed!!

Any even vague insite (or maybe just a quick up the butt) would be amazing

Well don't give up hope or sell your horses just yet icclemunchy. We were on the verge of selling my DH's bike, thinking he'd never be able to use it again - thank god we didn't.

He used to say exactly the same thing about the kids too - that he couldn't play with them and it made him feel so sad and guilty; again a thing of the past.

He's not coeliac either (at least we don't think so..), but he has accidentally eaten gluten a couple of times since when not thinking (gravy a particular culprit) and the aches and pains came straight back (although thankfully went just as a quickly), so he is obviously intolerant to it in some way that doctors, the medical profession etc. cannot grasp or diagnose.

So worth a try I would say. I do hope you find something to help you. Best of luck xx

Painfull hair yes! Even my GP laughed at that one. I have your full list of symptoms except the sinus infections and the knees that won't lock. I also have anxiety which is helped by Fluoxitine. I have recently started taking vitamin d which I think is helping with the tiredness. I had to give up work 18 months ago. Neither my body or my brain could cope with it. I'm fortunate that I'm 51 and my youngest child is 9. I find that hard enough, I can't imagine how hard it must be to look after a baby and to feel as you do at your age. I was always just so energetic, almost verging on hyperactive. It is just such a change for me.

flapinko very interesting that your DH has found gluten free is helping him. I think this may be my next plan. Before the school holidays I had been trying to eat a low carbish, cleanish diet which, although not gluten free was certainly much lower in gluten. Over the school holidays with picnics and fast food (mostly hastily prepared, and not particularly unhealthy, meals) my diet has suffered and I defiantly have felt worse for it.

Glad someone else gets the painful hair. I got a bit of a face when I mentioned it lol

Think I might try and cut down on the gluten, it can't hurt I guess especially since a low carb diet is better for my diabeties anyway

You need to ask pain team to refer you to a pain psychologist. I have had chronic pain all my life started when I was about 4.

I also have a horse and I know where you are coming from. Keep one just to give you somewhere to go that is a happy place.

I think if you want to find out if gluten is aggravating or causing your condition you really need to cut it out rather than just cut down icclemunchy.

Sorry, I know I'm sounding bossy now, so obviously feel free to ignore me (!) but it really isn't that hard to do, although I must admit our food spend has gone up.

The upside is that we're now all eating more healthily anyway, i.e. less pasta & pizza, more meat/fish & two veg type meals. And my DH has lost a whole stone in weight and now weighs the same as me. He's looking great on it. We eat A LOT of rice and potatoes, and occasionally gluten-free pasta sometimes too, which isn't that bad.

Breakfast is trickier, but he's settled on Greek Yoghurt, gluten-free granola and fruit/honey, which seems to be ok, and he eats a lot of Nak'd and Eat Natural bars as snacks - all quite sugary so may not be an option for you.

Porridge has a different type of gluten in it apparently, which some people are able to tolerate, but he is adamant he doesn't want to 'nix' his recovery so avoids that too. But perhaps you could start with just cutting out wheat gluten and see if that helps?

A quick google on the link between gluten and fybromyalgia brings up loads of pages and information, so if you don't want to take my word for it, have a read!

Again, sorry if this seems bossy - I feel very passionately about the subject having seen the change in him, that's all, and want to spread the word to help others!

I can't help specifically but I have a dad who is 16 and totally bed bound by chronic fatigue syndrome. She suffers from ( among other equally debilitating symptoms) unmanaged severe pain: joint, neuropathic and stabbing pain as well as severe headaches which mean she cannot sit up. She also has POTs and EDS. but no help from NHS for pain as she hasn't been helped by any pharmacological interventions including lidocaine infusion and morphine. So I do understand a bit.

But a good friend who has really similar symptoms has coincidentally been diagnosed after years and years of stuggles with sogrens syndrome . Might be worth a look. Very poorly diagnosed.

Seems there's lots of things it possibly could be. Any ideas where i go from here in terms of specialists? Or should I start with the pain team?

I don't feel so down about it today, I guess it could always be worse I'm just going to have to work out how to manage.

Not so easy just to keep one pasithea as ones retired and the other is in Theory he kids pony (not that they're interested lol) but I might see about breaking the little one to drive. Riding is beyond me but I might be able to manage the odd trundle round the block!

Thanks for all your help everyone

I'd have a look at Ehlers Danlos Syndrome on t net, and see if any of it rings a bell.

Agree with Pacific that sometimes it doesn't help chasing for a diagnosis, and best to spend energies on working out how to stabilise then live with it/ improve quality of life. But sometimes it does help to narrow it down, as if it is something like EDS, you can do a lot of damage trying to get better, as so many of the usual things you are advised to do can have the opposite effect.

I am biased I admit! I was given disasterous medical advice before and after a diagnosis of EDS and as I was desperate to get better I did everything I was told and then more so and dramatically deteriorated my condition as a consequence. And was told I obviously hadn't followed the advice and I should just try harder.,, which I did and have done irrevocable damage. So, learn from people like me!

I'd carry on pursuing a ball park diagnosis whilst also getting into any pain management courses available etc. A divide and conquer strategy.

And I wouldn't give up yet, as you may well be able to make small changes that help a lot via diet, nutrition, physio, hydrotherapy, medications, and supplements (try B vits and also D as if results borderline can still be causing a lot of symptoms).

Good luck, it's so hard I know x

I've had a quick look at EDS and whilst some of it fits i don't have any of the hyper mobility or skin problems. Will mention it to the GP today though.

I'm going to ask her to do a thorough blood panel aswell and go from there. Then just wait and see what the pain clinic say I guess

Ask to see all your results as well in case you have borderline thyroid problems or vitamin deficiencies. Another celiacs test before you start cutting out gluten would be good too.