why wont anybody help me???

ever since my diagnosis, the doc wont refer me to pain clinic till he exhausts the different medication combinations he can try. there isnt any fibro clinic or anything, no alternative therapies are available, im getting worse and no one helps me!!! i pop me pills and thats it! no physio,no support, no advice, no hope!! im single mum (8 and 4) oldest behavioural problems, im 37 and really really not happy :-(

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  • Oh Nadine, I do feel for you, it can feel pretty grim sometimes. There is help, advice and support out there, it's just a question of finding it. Unfortunately it's not easy in cases where your GP doesn't seem to understand your plight and your symptoms. Do you think it might be possible to ask your GP for a referral to say a Rheumatologist?! This is how I started to get the help I needed, correct medications etc. I was also referred from the hospital to a local CFS Group who taught me to pace etc. Perhaps this might work for you too - see if you can get a referral and if you are able to, try to find out locally if there is in face a Pain Clinic or something similar in your area. It always helps if you can do a bit of research yourself. It's not unusual to be given lots of different meds at the beginning, I think we all felt like guinea pigs at that stage, it's very frustrating isn't it. As you are feeling worse it's important you see someone who can help you - I know it's difficult but head back to your GP, get that referral if you can. Stress the urgency as you are on your own with little ones - our condition is hard enough, I hope you get the help you deserve and need. Take care, things will get better. :)

  • * that should read "to see a Rheumatologist". (And I read it through!) :)

  • their is alternatives relaxation or mindfulness does help .. the other ladys right on the specialist . Pain clinic or phisio ( dslexia too ) phisotheraty ).. try a different GP if yours in in a practice one of mine is amazing where another told me to think possitive .... read lots of books the more you understand the more you can tell the doctor your not alone you are with friends here. Take time to rest when kids are in school be kind to your self as much as you can take bath time ... I have 4 kids one with special needs and at times its been so hard but keep going and gentle hugs

  • I wrote a letter to my GP telling him how bad I was feeling & asked him to look into any other Fibro treatment was available, he responded straight away, found out all that he could then refered me to the neurologist. From there I've seen many other consultants for my various associated ailments. Once you're 'in the system' it gets easier, the secret is getting on the right track.

  • i got diagnosed by a rheumatologist and initially was put on pregablin which made me sick. i asked the doctor to refer me to the pain clinic and he refused!! im definantly going to ask to see another doctor as it must be nearing the 2 year mark since diagnosis and im no nearer to getting control of my fm as i was at the start!!

    thanku all for your kind words xxxx

  • If it was your GP you are asking, have you thought about asking your rheumatologist to refer you?

    xxx

  • i only seen him once when i was diagnosed, then he referred me back to my gp and havent seen him since x

  • I agree with libbyde.have a look on the net for local groups.i know what you are going through is very hard.i wish you good luck.there is help but no one seems to help at all.its the same with me no help.my gp is useless does not know anything about firbo and to be honest i have asked and asked to see a rheumatologist but to no avail.i have had fibro for 8 years.so again good luck to you.

  • Oh that's bad Nadine - I think in your shoes I would be asking to see the letter/notes that your consultant sent to your GP (is your right to see them - and to get a hard copy to circumvent the *fog*)

    I guess this will be tough to do, but you have to fight to get sorted and if you have an arrogant **** of a GP ask to be either referred back, or get a new GP

    (Sorry - I'm on the warpath to sub-standard GPs at the moment lol!)

    Spirit x x x

  • I have a wonderful GP who referred me to a great variety of consultants. They all agreed I had Fibro, scratched their heads, thought about various meds (some of which made me even more sick). Finally, I read all I could find online (recognising that some of it was unhelpful) and, with the help of my GP and a local physio, I've got myself into a position where I can cope, even to the point of returning to work though some days remain very difficult.

    Consultants could well be the answer but, I have to say, in my case they weren't.

  • I was referred to a Pain Clinic and to be honest it was not a great deal of help, the consultant was great, i spent over an hour with her and what she told me halped but as far as treatment, there isn't much, I was referred for acupuncture but it didn't do anything for me, the only thing they could do was refer me to a Pain Management course but I was trained a while back to give this course but still agreed to go on the course but I am still waiting for that.

    When I was diagnosed with FMS I was told my the Rheumatologist not to waste money looking for a cure but there isn't one !!

  • My G.P practice has 6 G.P.s and also has newly qualified doctors to give them experience. It was one of these that referred me to the pain clinic who made me feel a lot better about myself, understood the problems and were very encouraging. The pregabalin they gave me I had to stop because of side affects but the psychological lift it gave me is still with me. Earlier this year I had a severe hip problem and I saw a new( to the practice) Russian lady doctor ( no not Freda from Holby) who did xrays and sent me to a physio who did a brill job. the bad news was that the xrays show I have osteoarthritis in both hips and lower back. and will probably want a hip replacement before too long. Really looking foward to that !!!!!!!!!!!!!!

  • we will all help each other get our fundamental rights. it is ridiculous how inadequate we are left by the medical world.

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