Unmet Medical Needs/Support - Fibromyalgia Acti...

Fibromyalgia Action UK

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Unmet Medical Needs/Support

Tolula profile image
9 Replies

Please can you suggest how best to get better support and help with managing my pain and other related condition on a daily basis. When l complain about anything especially related to my developing other condition such all itchy skin irritation, burning pain from my lower back into my hips and leg, l would be told that my condition is very difficult to manage because l have mild undifferentiated arthritis in my joints, slip disk and fibromyalgia.

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Tolula profile image
Tolula
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9 Replies
M0AL61 profile image
M0AL61ModeratorVolunteer

Is there another GP you can discuss things with? If not, and your current GP is not being helpful, I would be thinking about changing surgeries.

redeyes2 profile image
redeyes2

did you ever consider asking to be referred to pain management?

Tolula profile image
Tolula in reply to redeyes2

Already attending Pain Clinic. Management good but waiting for a letter from their physiotherapist. Down for hydrotherapy as well.

deejames profile image
deejames

Referral to a pain clinic would be a good first step. Appointments however can take a very long times so in the meantime perhaps researching online for self help techniques for dealing and managing your pain might be an interim measure.

Dee

Kazhc profile image
Kazhc

If you get the answer please share! My go can be useless and has only offered mental health support because apparently cbt helps you deal with the pains rather than manage it. I disagree and thing it should be dealt with from both angles, you can’t depend on your mind to fix the agonising daily pain many of us suffer. It may help but it’s not a complete solution.

So annoying hun when you feeel fobbed off each time, I have always said that pain should never always be referred to as your fibro, I am currently having severe neck pain but in the muscles that are at the meeting of my skull- very difficult to get at, I have an appt. on 31st with my rheumo doc (not seen him for 2 years) these muscle pains cause migraine attacks for which I have sumatriptine BUT I would rather be treated than take meds, it only happens at night and i am finding |i cannot lay on my back now as my head is refusing to rest on the pillow,I feel my neck has been pushed forward, Ive tried without- its worse so I shall jolly well insist on some physio to help with this,, I

Tolula profile image
Tolula in reply to

I sometimes feel they enjoy fobbing patients off. l am learning not to allow it any longer. My Rheumatologist requested MRI of my neck, result shows l have a sort of problem. Was told by the Trauma clinic that they were going to refer me to Spine Dept since Sept 18, still nothing. Been chasing the hospital still no positive result. Not giving up though despite the fact that my balance is been compromised by the system.

SusieJo1948 profile image
SusieJo1948

Hi do you have psoriasis aren't Dr's doing anything to help. I have three different Kinds. Erythdermic, Guttate,plaque. I get creams with a steroids in them but can only use for two weeks if I use longer it will get in my system and cause me to break out more that's the only steroid I can do. Plus the sun breaks me out. I'm taking a pill called soritane or generic acitretin. It's really potent it's a form of vitamin A you can't get pregnant while on it and for three years after because it will deform the baby.when I first got it I was in hospital 8 days they treated me like a burn victim. The erythdermic is very dangerous it can put you in hospital and also kill you. The soritane takes awhile to heal my legs I get it clear and a it might stay clear for 5-6 months and it's the only thing that helps there are others biologics I can't take because I've had cancer twice in last year and it can cause you to cancer. There is a new on out called otexzla. We decided to keep doin. The soritane because it helps. Ask Dr about these treatments,do you see a dermatologist.

I know how you feel the itch is terrible. I was told to take a bath with Apple cider vinegar I bathe and soak in it for at least 5 minutes you can wash your body and hair like you normally do it helps with the itch. If you are sick,or under a lot of stress it will pop out

It's a life long disease an autoimmune disease. I"m sorry I wrote a long reply just wanted to help you. Love susiejo1948

Tolula profile image
Tolula

Hello Susiejo1948, sorry for responding late. This was due to circumstances beyond my control and also recovering from flu. No, l can not put a name to what l have at this point in time, but l have dermatology appointment in April which is quite some time away but my GP practice have reluctantly prescribed E45 Itch relief cream, Fucibet cream/ Eurax cream. Coping on those two creams and two different types of antihistamines tablet to help me. Sometimes they work and at other time, they do not stop the itching or crawly skin conditions.

Not to worry, your response was not too lengthy for me. Infact, l like all the points raised. Lest l forget, plaque do not work or agree with me

Thank you.

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