Fibromyalgia Action UK

Feel like I`m going round in circles

Hi all. I have three appeals pending at the min, two for ESA and one for DLA. Been turned down once for DLA after waiting for 2years for it to get to appeal. Reapplied in Nov and was given lower rate care. Now this one is going to appeal too. Have had letters from GP Pain Clinic, Neurologist, Rheumatologist, Occupational Therapist & Family which have been sent in with my forms. Today I have rang Social Services and asked for an assessment for my needs, but she has said that this is to have carers in to wash and prepare foods and stuff, but my Son does all this for me. All I want is for them to assess me and a letter. Pain clinic yesterday! Asked Doctor for a Vit D blood tests and have been told thats got nothing to do with my Fibro and dont need one doing! Please can anyone help, as many of you out there feel like giving up!! :(

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they should come out to do an assessmnet, mines for care as well, my family do a lot but its to take pressure off them. You should also be able to get an OT assessment that will cover bathing etc, its well worth getting an assessment

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Thankyou :)

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Have you got the guides from Benefits&Work? If not, email info@fibroaction.org and I can email them out for free.

Ask your GP about getting a Vit D blood test. Perhaps say that one of the national charities has commented that Fibro can mask vitamin D deficiency (because the symptoms are similar) so blood testing is needed. I'm hearing that many hospitals aren't keen on doing this test (no real idea why as it's an easy win for the doctor!), but that is ridiculous. My GP has always been quite happy to get me tested and I do wonder whether if you can just get a blood test order form done by your GP (and GPs often don't know about what tests the hospital is/isn't keen on doing) then it's easier.

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Thanks very much for that I will be clicking onto it. Again I feel a lot better knowing other peeps know just what I`m going through :)

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somedays I feel like giving up but then other days the fighter comes out in me. I am appealing for esa and got a letter to say did I still want to appeal feel like it is just mind games and I will not give up. with gp's and consultants there is always disagreements seems like they want to disagree with each other if you ask me. I feel like a ping pong ball going round all the different depts of the hospital with no answers to how to relieve my pain and fatigue. Hope you stay strong and insist on what you need. I write a list of what i want to say when i attend appointments and i find it easier for them not to fob me off. seems it is all down to cost and they don't want to spend money on tests if they don't have to.

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Thankyou :)

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Can answer the bit about Vitamin D. That's a load of rubbish. Dr Clifford Harley, Orthopaedic Physician always gives Vitamin B injections yearly. I have been a patient of his for years. When I stopped injections I got more pain. year. A quarter of Fibro pain sufferers have insufficient levels in their blood may be more. You can search this on the internet. Also why should you be fobbed off. Diabetics get all that they need why shouldn't we. This is ridiculous. GPs do not bother to test Fibromites adequately. This is my experience. If they were to did and provided Vitamin D injections, there would be a reduction in pain. This is another thing we should be campaigning for.

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Thanks for your imput. Rang my own GP today and made a complaint about how I was treated yesterday, having Doctor at hospital keep answering calls on his mob from his wife and then telling me I cant have the test done also him refusing to do a letter for my appeals for me!! So my GP has agreed to do one for me, so at least one thing has turned out right :)

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Vitamin D is a must.

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Thankyou :)

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I have paid my National Insurance contributions for years and not used it much. Sure there is enough in the pot for those who need vitamin D. I am sure you have paid in too. You are deserving.

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Thankyou :)

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Well done Sadoldred. I am pleased that your GP has written a letter for you. Also note what happened with the doctor and the fact that he did not support you for future reference, just in case you need it to support your claim in the future. That is bad, some of these hospital doctors can be funny. Don't understand why some of them go into medicine. Its a calling. Probably he was just good a passing exams. Great news!!!!!

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Thanks x Ann

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you need to get blood test for vitamin d we all have low vitamin d my consultant done blood test my vitamin d was 0 now 55 after being on it over a year and it should be 175 and have to take for life it is to do with fibro .go to see another doctor also consultant should test you. the name of vitamin is d-cal chewable . hope that helps hun. xxx

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Thankyou x My own GP has now agreed to do one for me. I also have to send a letter of complaint to the Hospital. I am not being fobbed off any longer, its been 8years of having that done to me. Sorry rant over and Thanks again x Ann

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Hi roslyn,I saw your answer on here and now I`m puzzled.I had to ask my g.p to do a vit d test and she laughed and said what for.I just asked her to humour me as it`s not an exspensive test.

I got a phone call back from her appogiesing for not taking me seriously.My level is 13 but she said a healthy level was 55.

Are they all daft or what,I wish they would all start singing from the same hyme sheet.

I am now going to have a bone density scan on the 12th of this month.

Must say amonth into Ad-Cal and my hair has stopped falling out.

Love and hugs Butterfly54xxxxx

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Sorry roslyn,see my comment below sadolred.xxx

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Well done Sadoldred, I am so pleased that your GP has agreed to do one for you. What a result. Enough is enough. Its your time to get what you need and to be treated properly. x Karen

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Thanks Karen. And yes the fight is coming back and I`m not giving in. Had a very bad day today pain and stress wise, but am on track again :) Ann x

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glad you are getting your blood test done. my vitamin level is 55 consultant said it should be 175 so don't know what your doctor is saying. i know my hair and finger nails are growing back.[:))]xxx

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Hi Roslyn. I have trouble with my nails too. They used to be so strong but now have awful ridges in then, and break all the time. And do your teeth go along with lacking in Vit D also? Hugs Ann xx

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hi Ann, not sure about teeth i know the last 2 visit's have not needed anything done.where a few years ago i used to have loads done so think vitamin d is working all round. also for dryness of hands and body you can get double base gel from doctor. hope that help's. hugs lyn xxx

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Thanks Rosylyn for that info. GP tomorrow so I will ask him :) x not a good day for me today, all this rain about just makes it so hard to move :( x Ann

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I'll have to ask my gp about this too, my thumb nails keep splitting and peeling at the cuticle base. I tried painting them to stop the peeling, but to no avail.

It used to be the tops of my fingers that the nail would peel back from, they are all very soft too.

I've only ever had blood tests done re my fibro, but nothing ever gave cause for concern, all normal. I don't know if vit levels were checked though.

BW

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