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really pissed off with my doctor

(18 Posts)
gallifrey Mon 18-Mar-13 20:39:55

I'm going to try that too then definitely, thank you x

tribpot Mon 18-Mar-13 20:27:09

SCOTCH - my dh is pretty much grain-free. Hasn't made the slightest difference to him confused but fibro is such a complex condition that different things can have very different results.

gallifrey Mon 18-Mar-13 19:38:23

funnily enough I had my second dd at 40 but was diagnosed before I got pregnant.

SCOTCHandWRY Mon 18-Mar-13 19:35:47

MrsM! Sorry!

SCOTCHandWRY Mon 18-Mar-13 19:35:20

Well mrsH, that's the thing - grain free means no bread! Yes you can get gluten free bread but look at the ingredient list and they are full of chemical crap- barely qualifies as food, IMO! Paleo to ancestral diet at its simplest is unprocessed basic food (fish, meat, veg some fruit, nuts and seeds), grains are not replaced with grain substitutes, you eat something else instead (more veg, sweet potato in moderation, cauliflower.
Pretty radical change, but easy once you are used to it ( I say that as a former bread/grain/carb addict!).

mrsmobbs Mon 18-Mar-13 18:45:45

I do wonder about wheat etc as I virtually live on bread etc, I seem to crave it if I try to cut it out, I have tried soda bread but you can't toast it for breakfast and I am not good with milk so any suggestions for replacement of bread appreciated as I will give it a go,

SCOTCHandWRY Mon 18-Mar-13 18:23:46

Have any of you diagnosed fibro suffers tried a total grain exclusion diet?
I did not have a diagnosis, but chronic joint and muscle pain, headaches, intense pain if certain bits touched... Got a lot worse after last dc at age 42.
I cut wheat, and all grains from my diet for other reasons (following an ancestral diet) and was amazed that all of that just started to disappear within days! I didn't even realise how bad I'd been feeling until I stopped feeling that way all the time!
Now if I eat any gluten, MSG, and certain other things, the joint pains and headaches come back straight away.
Reading up about chronic pain, various types, and a lot of people with diagnosed conditions get improvement/cure by going grain free... Worth a try? smile.

mrsmobbs Mon 18-Mar-13 18:06:14

I also have fybro which according to the specialist at hospital was brought on by having ds at 40 so what did I expect, not very helpful, but the tablets I am given give make me feel so much worse, I survive without. What I have found and I know it is not ideal for everyone is to take regular exercise, I avoided at all costs until starting a new job last August within walking distance and the 20 minutes walk each way has made such a difference I could not believe it, I am still stiff and in pain especially shoulders meaning I have a permanent headache, but my gp said he does not know an awful lot about it and seems to think it is my head. I am worse in cold weather, but agree that perhaps a private referral is best.

tribpot Mon 18-Mar-13 16:58:48

Gallifrey, in Leeds we have a service which is operated jointly by the acute and mental health trust to provide support to patients with Chronic Fatigue/ME. The PCT pays for a series of consultations - not loads, but prob a year-18 months' support, to help with things like pain management, physio, occupational health and some psychological services too.

I'm hoping you have a similar CFS/ME service where you are - the local fibro group will know for sure.

gallifrey Mon 18-Mar-13 15:21:03

tribpot I have been a member on the uk fibromyalgia forum for a couple of years but had forgotten about it so logged on last night!

What is the chronic fatigue service?
My doctor told me to join the local fibro group but so far haven't, they meet up in town every month but where they meet would be hard for me to get to, but I will make the effort now to contact them and they might be able to help me.

gallifrey Sun 17-Mar-13 16:32:22

I was diagnosed with fibromyalgia by a rheumatologist in 2010. I had 11 out of 15 trigger points. He just gave me a prescription for amitriptyline and I've been left to get on with it. I don't get any help with anything and I don't have a carer. I had an OT visit and she gave me a bath board and perching stool. I don't even know how to go about having a carer. I sent off my DLA form last week so will see what happens with that.

tribpot Sun 17-Mar-13 15:48:27

Unfortunately your experience is pretty common when dealing with fibro. If you're not on a very high dose of pain medication it may be worth increasing although this can come at a cost as well. My DH's pain meds are now fiddled about with under orders of the Chronic Fatigue Service, which feels much more reassuring than our (excellent) GP tinkering on his own. Have you had a referral to CFS/ME? There might not be a massive amount they can do but they will want to keep you out of your wheelchair if possible. (Albeit not for the same reason as your dd does - I'm afraid she needs to be told this is part of the deal; my ds has always known his dad to be in a wheelchair so it doesn't bother him).

Who diagnosed you with fibro? Was it the GP? If so you definitely need to be seen by a specialist.

You could see a pain specialist privately as well as / instead of a neurologist, although I wouldn't give up on the NHS option yet.

Do you have any online support? (I mean beyond MN) Have you checked out the forums at UK Fibromyalgia?

I know how difficult it is to keep pushing for help when you feel so unbelievably shit all the time. Do you have a carer?

digerd Sun 17-Mar-13 15:39:24

I have had private health tests, and I get the results, make an appt with nhs GP and show him the results. He acts on them - no problem. Didn't need a referral from GP.

Thumbwitch Sun 17-Mar-13 11:39:20

Do you have the option to see another GP? You could always try that as a first port of call, unless you already have.

MrsJohnDeere Sun 17-Mar-13 11:37:21

You don't even need to see your GP to get a private referral. You can just arrange it with the private doctor you want to see (via their secretary) then they or you phone the GP just to say is that ok, and a verbal 'yes' over the phone is enough.

Agree your GP sounds useless. It is so frustrating when they have that 'brick wall' mentality, isn't it.

gallifrey Sun 17-Mar-13 11:26:37

Thank you x

TheAccidentalExhibitionist Sun 17-Mar-13 11:23:45

Ask your GP to refer you privately. You have to get this sorted out and get a diagnosis you feel is right.
Your GP sounds like a waste of space frankly.
Good luck flowers

gallifrey Sun 17-Mar-13 10:46:02

I made an appointment because I am in a lot of pain and I already take lots of painkillers. Also I've been getting strange sensations in my legs and the other day couldn't grip properly and had trouble picking up small things like coins.
I told him all this and he just nodded and added stronger painkillers onto my repeat prescription sad
I really don't know what to do now. I have been diagnosed with fibromyalgia and then basically left to get on with it. I get no help with anything and am in the support group for ESA. I have just applied for DLA.
I am in so much pain all the time it's making me almost cry. I have started using my wheelchair more and more and my dd hates it.
I'm pretty sure I have MS and have been misdiagnosed but not sure what to do next. I am tempted to go private and see a neurologist but not even sure how to do that!

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