made to feel worse than ever

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Lizzeedee

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Hello people. I am new on here but would appreciate some advice please.
10 years ago my GP diagnosed Fibromyalgia but at the time said its something you have to live with and a lot of it is the mind (!)
Needless to say I felt worse than when I walked into the surgery so I just carried on and struggled constantly in pain and unable to get my GP to understand. and trying to find things myself that helped......I failed miserably.
I have recently moved to a new part of the country to be nearer my grown up children and registered at a new GP.......thinking 10 years on things surely will have changed and I will get some help. How wrong was I.
The new GP seemed obsessed with fact that I was on antidepressants and said " well if you work full time you certainly don't have Fibromyalgia "
I am at my wits end. I am struggling at work but as I am on my own and have rent and bills to pay I have to work ( even at 60)! I am in constant pain. I am not sleeping and I feel like no-one understands ( or wants to take the time to understand) just how severely all the small things put together have such a huge detrimental impact on my life and my mental health

My employer ( The NHS would you believe?) are not in the least bit supportive because I don't have a confirmed diagnosis . How in heavens name do I find a doctor in the Leeds of Bradford area that will help me?

I am so sorry my first post has been so negative but I really need some help please!!

Thank you so much for listening . x
 
Hi Lizzeedee,

I'm so, so sorry that you've had to endure such a lack of support through all of your struggles. I can assure you that there are plenty of people here in the forum who have no choice but to work with fibromyalgia, and it breaks my heart whenever anyone gets dismissed so heartlessly by a medical professional!

As far as the idea that fibromyalgia is all in the mind, very recent research has finally indicated that it is actually autoimmune. There are biological markers (such as higher substance P within spinal fluid) and trackable differences in brain activity that have been tied to the condition - just sadly not things that doctors can easily test for at this point. The lack of understanding from many GPs on fibromyalgia - particularly of how varying fibromyalgia's presentation can be - is just so frustrating.

There is actually a list of doctors who specialise in fibromyalgia here on the Fibromyalgia Forums website. If you go to the top-level home page (so delete everything in the address bar after .org!), then go to the Get Help menu, and click on Fibromyalgia Doctors, you'll find the directory there. I can see that there are two doctors listed in Leeds - both are rheumatologists. You could also contact Spire Healthcare to see what their consultations cost, as I see they have a few clinics in your area and have published about fibromyalgia in the past. That's the best I can find from over here!

Can I ask what you've tried so far for self-management? You don't have to share if you don't want to, but perhaps we can suggest some new ideas. Finally, I also stumbled across an article on Leeds Live called "11 things people living with fibromyalgia want people to know". Might be good to send to your doctor!

There's no need to apologise for being negative - we all need to be able to talk about this stuff somewhere, and everyone here will understand! Please do let us know how you get on 🌻
 
Jemima thank you so much for taking the time to reply. It means a lot.
I will definitely look into the rheumatologists that are mentioned and also spire. I was so disappointed with the attitude of gps I was afraid to contact anyone else in case I was dismissed all over again!
I have tried yoga, swimming, counselling for my depression, cut down on caffeine and tried to eat a really healthy diet.i try to walk more and try to cut down on stressful situations.
Any advice or help is much appreciated and I am so glad I took the plunge and joined this forum...... I feel less alone and less crazy already. Thankyou
 
You're so very welcome.

It sounds like you're doing pretty great things already, which I know is frustrating if it hasn't got you anywhere! You might find certain supplements helpful for improving your sleep quality. People here in the forum have had success with melatonin, gaba, magnesium glycinate, and passiflora. You could also do an elimination diet to see if any food intolerances are exacerbating your symptoms.

As far as stress management goes, I really recommend reading up on psychologist Paul Gilbert's theories of the three human emotional regulation systems and using self compassion to pull ourselves out of a stress state. You don't need to buy anything - there are several websites that detail it all - and that helped me quite a bit. He won an OBE for his work.

I also found breathwork really helpful for drawing down stress. A therapist really kicked my ass and got me to do it every day - otherwise I don't think it would have done any good! He also got me to keep a daily diary and try to observe what was making me feel stressed out, and what was making me feel positive. It turned out I was getting triggered much more often than I'd realised, which was making a huge difference to the intensity of my pain.
 
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Seconding Jemima on the rheumatologist. They are the most qualified to make a proper diagnosis. Unfortunately, I’m in the US and don’t know a lot about the NHS. What I have heard, as far as wait times and such, isn’t good. I do know you should never continue to see a doctor who you don’t trust, and/or, who belittles you or your symptoms. Thankfully, my GP diagnosed me and has been wonderful.
 
It turned out I was getting triggered much more often than I'd realised
A few weeks ago I had a day where a few things went wrong, nothing bad. I wanted to pinpoint them and ended up with 31 annoyances. Thankfully next day there were only 5 and usually there are even less. But I wdntve noticed that day if I hadn't counted...

For breathing exercises I thoroughly recommend Wim Hof's breath-holding exercise, derived from Pranayama. I've tried a lot, incl. the yoga types, but nothing helps me like that does, it really resets quite a bit.
 
rheumatologist. They are the most qualified to make a proper diagnosis. Unfortunately, I’m in the US and don’t know a lot about the NHS.
Whilst they are usually the ones to diagnose fibro, simply because they can exclude rheumatic diseases, they will if they are thorough or there is doubt send you to a neurologist, praps endocrinologist, whatever seems relevant. But often, esp. in the UK, they send you back to your GP with not much more than a pat on your back. And a just as big problem as the waiting time in the NHS is the difficulty in changing docs, incl. GPs. So...
How in heavens name do I find a doctor in the Leeds of Bradford area that will help me?
what I'd do is first try to get a referral to a rheum. from your GP as suggested and try to get the diagnosis there. If you're lucky, they're good and can help you the way you need it, either themselves or by good recommendations for the GP, which may work.
If you are sent back to the GP dissatisfied with both apparently some people say there is a way to change GPs if you want to hard enough, I'm not sure how that works tho.
To find a doctor that knows something about fibro you could try recommendations by local support groups (see FMA UK website); I don't know if it's as possible to phone around in the UK as it is elsewhere to ask the secretaries how many people with fibromyalgia they have...
A private appointment somewhere may help you get further quicker, if feasible; a recommendation by a fibromyalgia expert (like Chris Jenner in London) should impress any GP and make them co-operative.
I just searched for <fibromyalgia leeds> and came across 2 names on this very forum-site :D, both rheumatologists...: Helliwell at the University of Leeds and del Galdo at Leeds Institute of Molecular Medicine. With telephone, address....
The directory (bottom of "Home" or via "Get help") has 17000+ in the USA, 422 in Canada, 6 in the UK, and 0 (not 1) in Germany, 0 in Portugal. So lucky you @Lizzeedee: 6 in the UK, and 2 of them are around the corner.
I also has a few support groups (bottom of "Home" or via "Get help"), 2 in the UK. And heyho one of them in West Yorkshire - in Selby. (20 in the US, 8 in Canada).

In a separate thread I'm giving an overview of the resources on the homepage of this forum, fibromyalgiaforums.org....

Support groups I've found on the web generally tho:
There seems to be a support group in Bradford at Bradford Deaf Centre that meet every Friday, you can find telephone and mail online.
And there's a Wakefield fibrogroup org, if that's near enough. There must be one in Leeds too, but I can't find it.

But - If you're anything like me the docs can't help much at all after you have the diagnosis, so apart from forum ideas, good physiotherapists and alternative practitioners are much more important... My GP does everything I ask, but my sleep lab psychiatrist is the only one I can talk about developing my use of amino acids etc. which I found out via forums and websites.
 
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