Where to go from here....

[Dmw9978]

Hi, I could really do with some friendly advice please!

I have osteoarthritis and degenerative disk disease in my spine. Two of my lumbar disks are also herniated. I was referred to a rheumatologist who sent me for an MRI and did a lot of blood tests as I also am experiencing widespread joint and muscle pain, fatigue and a whole lot of other symptoms. They tested for deficiencies, for rheumatoid arthritis and ankylosis spondylitis (as it is in my family). The rheumatologist told me that if my results were negative for inflammatory arthritis, then my symptoms were probably due to fibro. Well I received a letter to say everything came back ok, except for slightly raised inflammatory markers, and basically that was that! 😟

I rang the rheumatology unit to see when my next appointment would be, to be told that I had been discharged back to my GP as there was nothing else they could do. I've obviously been back and forward from my GP (I see a different one each time, which doesn't help at all!) and I now have a large range of painkillers and other drugs which after trial and error, I can now kind of function as a stay at home mum to three. Ive had to give up my midwifery degree and then a part-time pharmacy job due to pain and fatigue and am now neither earning or receiving nothing as my husband works and I have not contributed enough national insurance to claim contribution based esa.

I take tramadol, naproxen, paracetamol, amitriptyline, citalopram, and omeprazole. My symptoms are : severe lower back pain, sciatica, severe fatigue, ibs symptoms, twitching muscles, restless legs, burning/stiff hands, joint and muscle ache, sleep disturbances, intolerance to hot and cold temperatures, headaches and fuzziness. I also have PCOS so don't know if some symptoms are due to that, such as abdo pain and my hair and nails are extremely thin and brittle.

So I feel as if I'm in limbo land and can't see any light at the end of the tunnel, as I've been this bad for over three years and I've accepted that this is how I am now. I've tried physio which did nothing and I've been referred to the pain clinic but have been waiting for a year for an appointment! 🙄 I feel I can't explain how I am to friends and family as being due to fibro as I haven't received an official diagnosis, just a 'it's probably fibro'! So when people come round and I'm still in my pj's coz I just have zero energy, I'm sure they think I'm just a lazy slob. My husband is brill, but he works shifts so I'm often left struggling with the kids, feeling awake enough to do the school runs etc.

I'm so sorry for the long post, but I really could do with some advice as to what I can do, it's just so depressing to think that this is who I am for the rest of my life, I'm so down and lonely as I can't socialise and have lost touch with all my friends. Help! X

[peck]

Hi and welcome to our lovely forum. I'm sorry to hear all that you are going thru and have went thru due it these horrible issues.Im not from the UK so don't know what your next move would be in terms of gp etc...I do wish you the very best and know you can always find a friend here.Be blessed. Peck.🐤

[Hidden]

I really don,t think hospital consultants should just sign you off without giving you a proper diagnosis. I am lucky in that I have 2 rheumatologists looking after me, one deals with A.S and the other in the big city hospital where I used to work; has a good centre for fibro sufferers. I don,t see either of them yearly BUT they have both put me forward for therapies to help with my mobility and pain. It seems to be postcode lottery on health care nowadays. Not sure where you live but maybe you could do some digging around and find yourself another rheumatologist in another Trust and ask your g.p to refer you, if he won,t then you can book a private appt. (I don,t see why we should ) , you seems well clued up on your other illnesses but if you need to know if you have fibro then just discuss this only at the appt. and ask about therapies like hydrotherapy and acupuncture. in between I go twice weekly to the local swimming pool with my daughter, she swims and I soak in the warm Jacuzzi bubbles, I,ve always found warm aquatics a good remedy for fibro and cfs. Let us know how things go, there are lots of people on the Forum here who will advise you.

[Hidden]

Hi

I apologise if i have missed something in your post as I suffer from concentration wander (my term) I am really surprised you were not offered treatment I suffer from similar and was offered steroid jab's or an op

You need to speak to your GP

Could you claim PIP as I have helped people claim it successfully you can find more info at Benefits and Work web site which has a self assessment test

[Dmw9978]

Thanks for your kind replies. 👍🏻 The rheumatologist said that my spine was not 'bad enough' to operate! So I've just got to wait for it to get worse and worse before they will consider surgery. 🙄 I was referred to physio which didn't seem to help at all. I stopped going when she asked me if my limp was just a habit I'd picked up! 😖 (When I put weight on my right leg I get pain in my lower back)

I asked the GP to chase up the pain clinic about 4 months ago, still not heard anything. 😳

I know getting an official diagnosis won't change the way I feel, but at least I could put it on any claim form and I could explain better to my family why I am the way I am. I'm going to have to push a bit harder and take the initiative it seems. Thanks. ❤️

[Hayesider]

Hay Dmw9978

Would like to do long reply, but late at night, and I have two long drives to do tomorrow leaving at 8am. If you PM me, I can see when back home, rather than forget. There are several points you have mentioned I might have answers for. Take care, and will try to reply tomorrow night.

Hayesider xx

[TheAuthor]

Hi Dmw9978

Welcome to the forum and it is wonderful to make your acquaintance. I have pasted you a link below to our mother site, FMA UK which hosts loads of useful Fibro information:

fmauk.org/

I have also pasted you a link and an excerpt to the *GOV.UK cache on PIP (Personal Independence Payment) which you could apply for but you would almost certainly have to have an assessment:

*1. Overview

Personal Independence Payment (PIP) helps with some of the extra costs caused by long-term ill-health or a disability if you’re aged 16 to 64.

You could get between £21.80 and £139.75 a week.

The rate depends on how your condition affects you, not the condition itself.

You’ll need an assessment to work out the level of help you get. Your rate will be regularly reassessed to make sure you’re getting the right support.

Your carer could get Carer’s Allowance if you have substantial caring needs.

GOV.UK - PIP:

gov.uk/pip/overview

I want to sincerely wish you all the best of luck, and please take care of yourself.

All my hopes and dreams for you

Ken