New here. First gp visit after official diagnosis

[Knightqueen84]

Ok here I go.....

First off thank you to anyone who responds to this, it will mean more than you know.

After 3 years of going through nearly every gp my surgery has, numerous tests, every drop of blood drained from me, being fobbed off, made to feel like all this is in my head or that I’m just lazy, my ibs consultant was the first to even ask about all of my symptoms. After a few minutes he said I’m pretty sure it’s fibromyalgia get your gp to refer you to a rheumatologist. I spoke to my gp a few days later and told him what the consultant said, his was response was let’s not rush this come in and we’ll examine you. My heart sank and I cried until my husband got home from work. Thankfully he was like f that f him I’m booking you to see a rheumatologist privately.

£195 later, I finally have an official diagnosis and name for the torture that consumes my body, yay. But because in my area it’s primarily the gp that deals with fibromyalgia back to them I have to go.

I have my first appointment since the diagnosis today and I’m so anxious. I’ve worked myself up so much about this I had an emotional breakdown yesterday over a towel and wet bath mat 😂

I’m not expecting the gp to give me a miracle cure just some help to manage the symptoms, and to be listened to because I’m really struggling both mentally and physically.

So after that ramble any words of positivity would be much appreciated 😊

[SusieSquirrel]

It's good to get it off your chest and get it all out on here.

Good luck for today I hope you get something to try. I was given duloxetine 1st now on gababentine.

No miracle cure but it's something to try. I got to the point where anything was better than nothing but now I'm starting to come to terms with life with fibro I'm finding it easier to deal with mentally ...plus the sertraline helps lol ( not to be taken with duloxetine)

Let's hope your GP is understanding. Let us know how you get on 🍀

[Paddysdad]

I feel your pain and frustration. I have nearly fifteen years of it and I have never been referred to a rheumatologist. The doctors point blank refuse, telling me that I am diagnosed with Fibromyalgia already. All the various doctors I have seen have ever wanted to do is prescribe painkillers, anti depressants, anti seizure drugs etc.

One has to be careful as some of these can be addictive and I found out last year (when being scanned for something else) that I have liver damage. Well, I don’t drink and so my only assumption would be all the drugs I’ve been prescribed over the years.

So, I would say, yes, try and get help from your gp but, my experience is that a lot of it is self help. And, you will find things that help (not every sufferer finds the same things help and the symptoms are so wide ranging) . Most of all, try to keep active.

[Hidden in reply to Paddysdad]

Hi

My Dr has given me many pain killers over the years

Anyway 6 years ago I had terrible right upper quadrant pain, fast forward 2 years, we ended up going private (totally against the grain) just to get a diagnosis, I was diagnosed with non alcoholic fatty liver disease caused by meds from my drs over the years. This consultant put me on his NHS list because he said I'd spent enough!! November 2016 had a liver biopsy, non alcoholic steatohepitis. Then last year my enzymes spiked do my Dr got in touch with my consultant. He kept saying you are fine. He sent me for a fibroscan (I think this was to shut me up), anyway fibroscan showed that I now have compensated cirrhosis of the liver!! All n started because of meds so everyone please be careful. I hadn't even thought meds could damage my liver at the time. Sorry to go on. Take care Lynne

[Paddysdad in reply to Hidden]

Sorry to hear that. But, it does confirm my fears about the link between the drugs and liver problem.

[SusieSquirrel in reply to Paddysdad]

So to try and combat one problem you're dangerously causing another

[Midori in reply to Hidden]

That's shocking Lynne, but it is one reason I have cut back on my meds (apart from not liking to be controlled by the competing side effects!)

I used to be on all kinds of stuff, but now its just Ibuprofen when needed, and Codydramol when desperate. (I'm a bl**dyminded old bird!)

Cheers, Midori

[Hidden in reply to Midori]

Thank you. I just wanted to warn other people , I thought the Dr must know what he's doing but obviously not!!! Take care Lynne

[Knightqueen84 in reply to Paddysdad]

Thank you for the great advice paddysdad. I’m really funny about taking pharmaceuticals anyway so any natural remedies I would definitely welcome.

The only things I have found so far that gives me any sort relief is a hot salt bath in the morning for stiffness and a cbd freeze spray for the neck pain.

I’m the sort of the person that hates not doing anything so being active is not the problem it’s being able to. I know I’ll get there it’s just going to take patience (not my strongest point haha), time and a lot of research.

Thank you for taking the time to reply to me x

[Paddysdad in reply to Knightqueen84]

You’re welcome...good luck.

[Hidden]

Hi

How did you go on with your Dr, Knightsqueen I hope he was a bit more civil to you and that he actually helped you!! Please take care. Love and hugs Lynne xxxx

[Knightqueen84 in reply to Hidden]

Hi Lynne,

Sorry it’s taken me so long to reply had a bad couple of days, this is all so overwhelming.

So the good news is he ended up calling me so I didn’t have to trek out in agony. I said I need help with the pain and sleep. In short another dr who saw my referral from the rheumatologist has already referred me to a psychologist who specialises in pain which is great. He said he will up my dosage of amitriplyine on my next repeat prescription from 10mg to 30 which is should have been anyway for my ibs. So not all bad....I think haha

But I also needed a fit note which I hate asking for, he said no problem I’ll sort it out for you to collect at your normal surgery, I said great thank you my daughter will collect it after college. Fast forward to 5.30 she goes to the surgery to be told it’s not here it’s at one of our other surgeries in a village where a bus only runs once an hour.

So yesterday was a nightmare I had to go collect that, take it to the job centre and make it home without just collapsing to the floor saying no this is me now haha.

So I’m not entirely sure how I feel about it all, I’m thinking about changing surgeries but it will mean I will have to travel further for appointments so I’m trying to weigh it all up.

Thank you for taking the time to not only reply but to listen to my long winded ass. I’m feeling so overwhelmed right now with the diagnosis, benefits and doctors I have no clue what I’m doing. Throw in some guilt, shame, feeling like a burden and sometimes it feels like I’m on a cliff edge so this really means a lot.

Take care, love and hugs Rachael xxxx

[Hidden]

Good luck today. Sending gentle hugs xx

[Knightqueen84 in reply to Hidden]

Thank you Mistyang. Sending gentle hugs xx