Sleepnot: I sometimes have posted under... - Fibromyalgia Acti...

Fibromyalgia Action UK

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Sleepnot

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I sometimes have posted under the name of Kentish Old Maid but got confused over posting & replying, so I post & reply under Sleepnot only now.

I think we need to realise & remember that when we visit a GP, he/she is NOT a specialist in fibromyalgia or Rheumatology, every GP has to specialise in one subject though, so unless she/he DID specialise in Rheumatology, she/he will not know enough about fibromyalgia & it's associated conditions or enough about pain management.

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Sleepnot
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Hazel_Angelstar profile image
Hazel_AngelstarAdministratorFMA UK Staff

Whether a gp specialises in fibromyalgia or not, there is absolutely no reason why they cannot either prescribe relevant medication or refer to pain clinics etc.

While there might not be a specific care pathway for Fibro at present, there is one for chronic pain which fibro comes under

Sleepnot profile image
Sleepnot in reply to Hazel_Angelstar

Sleepnot

Yes a GP can refer to a pain clinic & issue pain medication, but just as I volunteer for a domestic abuse charity as I am a survivor of domestic abuse, the trauma I suffered caused fibromyalgia.

The GP or pain consultant may not have suffered from chronic pain or fibromyalgia & so cannot completely understand or empathise with you. This is the main reason the charity against abuse I volunteer for, prefers to employ & have volunteers that know what it feels like to have gone through abuse.

I saw a pain consultant some years ago & she was quite knowledgeable about fibromyalgia but I was discharged after one visit, not very productive. We have come quite a way from when I was first diagnosed with fibromyalgia as quite a few GPs' did not believe in fibromyalgia & did not hide from telling me that.

Hazel_Angelstar profile image
Hazel_AngelstarAdministratorFMA UK Staff in reply to Sleepnot

I think we will need to agree to disagree on whether a health professional needs to specialise in a condition to be able to treat a patient efficiently.

Charities are completely different, and I agree 100% that a charity benefits from having volunteers who have personal experience, as FMA UK is exactly same

Sleepnot profile image
Sleepnot in reply to Hazel_Angelstar

Hi Hazel_Angelstar,

Sorry if you have misunderstood my comments. I didn't mean that a GP cannot prescribe appropriately unless they have fibromyalgia or extreme pain, but the point I was raising, was it obviously helps if they have empathy. If a GP cannot help that is when they can refer or as a patient we are entitled to be referred.

I was diagnosed by a rheumatologist who pressed on trigger points & said probable fibromyalgia. If you can see a person's problem physically, it is easier to diagnose & treat, but with fibromyalgia people tell me how well I look & don't see the pain I can be in. Same with any mental health problem, it is very difficult to see inside my head & no blood test can prove fibromyalgia, so it can be difficult to get the right treatment, which is also a balancing act/trial & error with using & adapting medications. I worked in a GP surgery for the NHS for over 12 years & one GP could not empathise with the stress I suffered & how it increased my fibromyalgia symptoms until his father & mother died in the same year. He even told the practice manager that he now understood where I meant. His attitude towards me changed after this. I was not his patient, that would have been unethical.

Peace & love & understanding,

Sleepnot

Hazel_Angelstar profile image
Hazel_AngelstarAdministratorFMA UK Staff in reply to Sleepnot

Crossed wires then.... Yes definitely helps when they have empathy and understanding ☺️

I think it's difficult for anyone to truly understand, an example I sometimes use is my husbands situation. He has always tried to understand the pain I'm in , the fatigue, the brain fog etc (and with our daughter who also has fibro) ... And for the main part he did...but it was only after a stroke with left him with post stroke fatigue and brain fog that he really "got it", that and constant pain from arthritis made him realise just how debilitating life with a chronic health condition can be.

Sleepnot profile image
Sleepnot in reply to Hazel_Angelstar

Thanks Hazel_Angelstar

Sleepnot profile image
Sleepnot

Hi Ajay575,

I have had so many referrals to various specialists over the years for lots of individual problems I get as a fibromyalgia sufferer. I think a MDT approach would be better (multi disciplinary team meeting between the gastroenterologist, endocrinologist, rheumatologist, pain consultant & psychologist) to address the multiple symptoms that come under the fibromyalgia umbrella. I have had much counselling, CBT, tapping therapy, hypnosis, osteopathy, chiropractor, accupuncture, acupressure, different types of massages, mindfulness & meditation courses over the years, which help but can not offer a magic cure sadly. it is a complex condition.

Sleepnot

Sleepnot profile image
Sleepnot

Hi Ajay575,

I also have had physio therapy & hydrotherapy & osteopathy & relaxation classes have probably been most affective for me. My local hospital used to run a physio class for fibromyalgia & it was pitched individually just right. Depends on health authorities too re budgets & medication. Not fair.

Sleepnot

Sleepnot profile image
Sleepnot

Thanks Ajay575

ShelWhitt profile image
ShelWhitt

Been interesting to read this thread. You are spot on with empathy and understanding, unless they have it, no one really gets it. That is why I don't try to explain any more. My take is, if I hadn't got it, I wouldn't believe anyone could suffer this much, so I can't possibly expect anyone else to believe it. That is why this site is so good, everyone does get it! And because we are all suffering in a similar way, we all want to help each other. Which is great. As to the pros and cons of docs. It is the same as with anything, it is a lottery, there will always be good and bad. Sometimes younger/fresh brains can be best, other times more experience is better. Likewise, some docs have a sympathetic manner, others are more practical. Then again, some are not very good at all, but even that can be down to how good their teachers were. Our perception is sometimes wrong anyway. So, we all muddle through the best we can! Take care.

Sleepnot profile image
Sleepnot

Hi ShelWhitt,

Thanks for your reply. Yep perception is key at times. I hope one day they find a cure for fibromyalgia. Take care x

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