Battling the Stigma: Please help as I'm... - Fibromyalgia Acti...

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Battling the Stigma

TormentedWriter profile image
37 Replies

Please help as I'm feeling really dejected and miserable after speaking to my GP.

I had a telephone appointment with a GP a few weeks ago and discussed my symptoms. Fibromyalgia was mentioned as a strong possibility, especially given my families history. Before I got to see that GP, they left the surgery.

I've just had a telephone apt with a different GP, told them what was mentioned in my last call and was told "Fibromyalgia is just something we use to explain unexplainable aches and pains" (direct quote).

Is this the general view of healthcare providers? I feel like the GP isn't taking my concerns seriously. I was told by first GP to keep a daily log of symptoms, which I have. I tried to explain them to this new GP but she only focused on "aches" and weight. Told her it was much more than just aches but she didn't seem interested.

Does anyone have any advice?

Thanks so much for reading this.

Have a great day - Michelle

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37 Replies
Murpy profile image
Murpy

Change your doctor!!!! Demand to be referred to a rheumatologist please. Sounds like you have fibro but doctor saying aches and pains, it's a lot more than that it's debilitating isn't it. Be firm . Hope you get the right help. Take care x

TormentedWriter profile image
TormentedWriter in reply to Murpy

Thank you for replying. The way she spoke to me and dismissed it made me feel like I was some kind of hypochondriac. She asked if I was working and I explained I lost my job because of my health before pandemic hit but that I had set up my own shop which I did part-time. I am also studying psychology with a view to changing my career - her response was "we don't want to sign people off as disabled" - I hadn't mentioned about wanting to be signed off. I've always worked, since a week before my 13th birthday!

Your reply has made me feel a lot better about my shock at her response. Going to speak to my surgery tomorrow when I have my blood tests. I'm so angry at the Dr's attitude.

Thank you x

desquinn profile image
desquinnPartnerVolunteerFMAUK Trustee

Can I ask a couple of questions?

Whereabouts is the surgery - general geographic area is fine?

What was the GPs age and have they been at the practice long?

Am I okay to put an anonymised tweet up from our account about this as I would like to get others views?

A GP should not be dismissive like this. It may be how this GP sees fibro or their gross simplification but it is not helpful to relay it like this to you. "We do not know a lot about fibro or chronic pain and do not have many good treatment options but there are things we can try. It will take time and patience to find a balance that works for you." - this could work and would not leave you with a lack of a trust or faith from the GP or practice.

I would maybe make a polite complaint to the practice manager.

TormentedWriter profile image
TormentedWriter in reply to desquinn

Hi!

Thanks for replying. I have no problem giving you the info.

The practice is in Surrey and I would probably say the Dr is in their late 40's to early 50's. She has been at the practice for some time.

Absolutely happy for you to put out the tweet as this attitude needs to be stopped. How can a medical professional pooh-pooh so dismissively the suffering of so many. I'm disgusted.

I'm actually in the process of writing a complaint and looking at changing my GP surgery.

Thanks for you help! x

Queenielot profile image
Queenielot in reply to TormentedWriter

Afraid there is a lit of that going on in practices and it's very unfair the surgery I go to was great then one by one they all retired and new ones arrived now when you ring up they don't know you from Adam and have to read up on your file we just seem to have new ones every few weeks I was diagnosed in 2017 and they just seem to say anything to get you out we only have 10.mins appointment and you can only ask about one thing its absolutely crazy but yeah go back ask to see the manager and talk to her tell her how you feel about the doctor hope it goes OK gentle hugs

TormentedWriter profile image
TormentedWriter in reply to Queenielot

What a terrible way to run a practice! We do have a fair few rotations of GPS but I think that's down to the surgery also being a training facility for new GPS. But we do have a lot of long-term ones too. I've managed to get an appointment with the chronic pain specialist but not for another 4 weeks - better than nothing I suppose.

Thank you so much for commenting - the support and advice means so much. Xx

Queenielot profile image
Queenielot in reply to TormentedWriter

Good luck please let us know how you get on x

Yassytina profile image
YassytinaFMA UK Volunteer

Hello , differently push to see a different doctor, it’s not too be dismissed or fobbed off, thankfully most of us find a doctor who is in tune with Fibro but does not always happen 1st time, stick with it, the forum is a good place to read some posts , does give you hope that we get there in the end xx

Cat00 profile image
Cat00 in reply to Yassytina

Where are these doctors? I've never met one in 20 years.

Yassytina profile image
YassytinaFMA UK Volunteer in reply to Cat00

After many years of being with the same doctor my practioner nurse booked me with a different doctor at my surgery , I could see why he was always booked up as was so thorough , I was chasing diagnosis for CFS but it was him that told me I had Fibro, I agree I still read here so many people still get dismissed/or fobbed off.☹️

Cat00 profile image
Cat00 in reply to Yassytina

I find with each new condition they just become less and less helpfull...😕

TormentedWriter profile image
TormentedWriter in reply to Yassytina

Hi - thanks for replying. I've managed to get an appointment with the chronic pain specialist so am hopeful that this will be a better discussion. The support and advice I've received here has been so encouraging. I was feeling hopeless and angry yesterday, but with yours and everyone else's responses, I feel a lot more determined and my spirits have be lifted.

It does seem that people all face an ongoing journey to simply be diagnosed, but with the friendly peeps like yourself on here, it will at least be a supported one.

Thanks again xx

ACHES AND PAINS 😣Sorry that doctor hasn’t got a clue, change your GP, and I am sorry you got dismissed like that, an understanding doctor would have either tried you on pain meds, and send you to a rheumatologist or pain clinic. You can still ask if you are not happy, which you are clearly not, good luck, let us know how you get on.

redmaple-5 profile image
redmaple-5

Ask to be referred to a rheumatology or neurology specialist for confirmation of diagnosis. How can they treat a maybe or strong possibility diagnosis correctly.

TormentedWriter profile image
TormentedWriter in reply to redmaple-5

I've just had word from the surgery that they are moving my appointment to the chronic pain specialist which is a huge relief. I was floored that the original Dr was so dismissive. I kept saying to her that I wasn't convinced I had it but, given all my symptoms and my related family history, it was something I would liked looked at. Her reaction was to act as if I hadn't spoken.

Thanks for commenting and for your help xx

redmaple-5 profile image
redmaple-5 in reply to TormentedWriter

Banging your own drum to be heard is the only way. Hopefully the chronic pain specialist will shine a light on your symptoms and give you answers. Keep us informed of your progress. Wishing you lots of luck. 😊 Remember pacing, avoiding stressful situations where possible and looking after number one are your top priorities.

Dinkie profile image
Dinkie

A letter to the practice manager is definitely in order here. I had to go down this route recently regarding my husband’s lack of care. Result a meeting with the senior partner, where my concerns were taken seriously and my opinion sought as to how to avoid such things in the future, a disciplinary for the GP concerned, a change in GP for myself and they are now falling over backwards to make sure I get proper access to whatever care needed. If you simply change GPs without addressing the issues the practice will be unaware and just blindly carry on believing they offer a good service. We shouldn’t have to battle for what we need but I’m afraid it’s the way of the world these days.

TormentedWriter profile image
TormentedWriter in reply to Dinkie

Hi - thanks for replying.

I'm so happy that you were able to resolve and address the terrible treatment at your surgery. Well done for no sitting back and taking it!

I submitted a complaint to the practice yesterday and received a reply this morning to change my appointment to the chronic pain specialist, which is great.

They didn't mention my complaint in their reply, so I will leave it until Monday to follow up with them, as I formerly worked in HR and understand the work that needs to go into all stages of the investigation process.

However, that said, I'm so angry with the approach of the original Dr. that I won't let this go unaddressed.

The only problem I'm facing, is the Dr is married to the Head GP - do this could be interesting!

Thanks again for you advice and support. It really means a lot xx

PeakyD profile image
PeakyD

Change your GP. Practice. I had a similar experience. Fobbed off for years by different GPs younger and older. I changed my GP practice and felt listened to and understood for the first time in about 15 years. Getting referrals and commenced effective treatment.

TormentedWriter profile image
TormentedWriter in reply to PeakyD

Hi - thanks for commenting.

I was about to change practices but have just had a response from the practice manager, arranging an appointment with the chronic pain specialist. Fingers crossed this appointment goes a lot more smoothly.

I'm so glad you have been able find a Dr that is supportive and understanding as I can only imagine what a relief that must have felt like.

Thanks again xx

PeakyD profile image
PeakyD in reply to TormentedWriter

All the best

Cotswolds25121 profile image
Cotswolds25121

As most have commented unacceptable response from the GP. Sad to say many people appear to have come across this attitude 😌It would help if drs/ health professionals were to be trained in this area of chronic pain. I recently took part in one of the studies as I am only to happy to pass information on about fm so that it helps those in the know to understand more about conditions like this. If we don’t take part how can we expect it to get better in the future.❤️Sleep well, everyone🙏I hope

TormentedWriter profile image
TormentedWriter in reply to Cotswolds25121

Hi and thanks for replying.

That's great that you are helping get the information out there to improve the knowledge, understanding and treatment of this condition. Even if it is discovered that I don't have FM I still firmly believe that we all need to do what we can to help escalate the medical and social attitudes to the illness. There seem to be far too many out there that see this as just an excuse for people to be lazy.

Winter9 profile image
Winter9

See a different GP, really. I was lucky that after requesting referral to Rheumatologist I got my Diagnosis of Fibromyalgia during that appt. So it really isn't just something they use to for unexplained aches and pains. that GP needs some training. Ask for a referral to Rheumatologist. Also for the record i've had Fibromyalgia for many years, have lost 5 stones in weight and am telling you now that it has made no difference in my symptoms at all. It has helped with my Diabetes and I feel better for it etc so it was a good thing to do but for me weight and Fibromyalgia made no difference. Good luck...keep on. Insist if you have to for that Rheumatologist appt.

TormentedWriter profile image
TormentedWriter in reply to Winter9

Hi - thanks for replying. I'm so thankful you have been able to find a Dr that supports you and believes in the horrible co ditions you suffer with FM. Huge congrats on the weightless and improving your diabetes.

I've had word from the surgery that they have move me to the care of the chronic pain specialist and I have an appointment in 4 weeks with them. Keeping my fingers crossed that it goes a lot better this time.

Thanks again xx

army1 profile image
army1

So sorry to hear about your experience with your GP, you are not alone with this attitude. Its lazy attitude from some GP,s as they connot be bothered treat you as a individual and take your problems seriously. Change your GP now

TormentedWriter profile image
TormentedWriter in reply to army1

Hi - thanks so much for replying.

I completely agree with you - Dr's seem to look at FM and either don't believe in it, or can't be bothered to embark on the long process of ruling out other possibilities a d obtain a diagnosis.

I have an appointment arrange by the practice to see the chronic pain specialist in 4 weeks so I'm keeping my fingers crossed for a much more supportive experience.

Thanks again xx

Sally444 profile image
Sally444

Hi. I'm not surprised you feel so miserable. What an awful thing for the doctor to say. It's no way just 'aches and pains'. It's the exhaustion that gets me every day and the stiff limbs and the stomach problems etc. etc.! Also, I know that weight can cause pain for some people but I weigh 8 stone.....so you can tell your doctor to get off her backside and start studying medicine again as clearly she has no idea of what she's talking about. Definitely write to the practice and get another doctor. Lots of luck. x

TormentedWriter profile image
TormentedWriter in reply to Sally444

Hi - thanks for replying!

I sent a complaint in yesterday shortly after my post on here. I mentioned that I think additional training was required as a result of the Dr's attitude.

They haven't responded to the complaint yet, but they have transferred my care to the chronic pain specialist and I now have an appointment in 4 weeks with them.

Thanks again for you advice and support xx

Sally444 profile image
Sally444 in reply to TormentedWriter

Well that's really good news. At least somebody is taking it seriously. It makes me very angry when people don't listen (as you probably guessed from my rant!) I hope the appointment goes well and you get the best help possible! 😊

R-OD profile image
R-OD

Ask to see/ speak to another GP, the DWP recognise it as a real condition I’m disgusted with your GP response luckily main recognises that I have it and is very knowledgeable and empathetic hope you have a better result with another GP

Acocoa profile image
Acocoa

Your case looks like mine when I was struggling 15 years ago when my daughter was 2. She is 17 now that's how long I have been suffering 😢. My GP and surgery at the time kept putting my condition; aches, leg and mucles pain, under feet pain and back pain, on my weight. I was a new mum then, feeling exhausted and overwhelmed of my pain. They kept giving me cocodemol and naproxen but no change. My pain progressed to all over my body. It was when I changed GP and move home before my condition was taken serious by my current surgery. Got referred to a Rheumatologist in 2018 and was diagnosed to have Fibromyalgia. I am having a brilliant care and support from my GPs.

Keep pursuing your doctors. Or change GP. Your pain is yours and only you understand your pain and experiences. Sending virtual hugs x 💐

TormentedWriter profile image
TormentedWriter in reply to Acocoa

Thank you so much for replying. Wow, that was a long journey for you! I'm so glad you are now receiving the support and care you need. I hope your health improves with the treatments.

I submitted a complaint yesterday and was told this morning that my care had been transferred to the pain specialist and I have my first appointment with them 4 weeks from now. Fingers crossed it's a much better experience.

If it isn't, I'll definitely be looking to change surgeries.

Thanks again for your support xx

Fabchaz97 profile image
Fabchaz97

I've had the exact same thing it's all about your weight. My old doctors was useless I pushed and pushed to get referred to a rheumatologist and now changed doctors and have been referred straight to a fibromyalgia clinic. Keep pushing and find a better doctors

Flo60 profile image
Flo60

I was sent to see a rheumatologist after being diagnosed 7 times by various doctors, with fibromyalgia. The rheumatologist looked at my feet and said, I see you have bunions (which I don’t) and then proceeded to tell me I didn’t have fibromyalgia as I wasn’t in pain that particular day! I have read that the pressure point tests aren’t always reliable and yet that is what she went on. She completely ignored the fact that some days I feel like my skin is sunburnt from my scalp and all down my body. That I have days when my muscles ache so much I think I’ve been playing tennis all night whilst simultaneously climbing mountains. Some days I can barely be touched without feeling like I’m being pinched. Now I’m being prescribed amatryptaline which is odd as it makes you drowsy and I suffer chronic fatigue. It is an ongoing battle.

Makie-Uppie profile image
Makie-Uppie

I have to agree with everything everybody else says on here, doctors can be a bit of a lottery. As for an imaginary thing, the F-word (and that was the only explanation) has tried to kill me about four times.The worst was when I phoned the doctors and spoke to two locums, they had both decided I was suffering from indigestion, I got to the hospital (don't remember all the details) and woke up 2 days later. I was told ten minutes more and I would have left via the morgue, everything was shutting down.

The hospital consultant told me that if I had said to him what I told the doctors he would have had me to A&E on the first day not the sixth or seventh day and four or five phone calls later. There was a last one but that was for a taxi, the driver of which somehow got me there.

The other times my temperature got that high I began to fit and again came close to cooling off in the morgue but hose times someone took notice pretty quick.

Pretty nasty for something imaginary, I now bear the scars from those encounters both inside ands outside my body, not pretty in the bathroom lol.

So don't let them beat you up, stick your guns and eventually they have to support you and if they don't their not worth worrying about.

ShelWhitt profile image
ShelWhitt

Hi. Sorry to read about your experience, but sad to say I think it is a common experience. Although I get on with mine OK it is fast becoming the norm that you cannot get an appointment with the same doctor more than once, you have to see who ever is available , as and when. It does not make for continuity, understanding or good doctoring practice, but that is how it is in our practice. Whether it is ignorance, not knowing what to do with us because they haven't answers, or simply the back door approach to introducing private medicine, who knows?I have been diagnosed fibromyalgia around 15 years now, but had it over 30. I also am hypothyroid and have been treated for that for years. For the last 5 years I have been in a total mess, with my husband also chronically ill for whom I am his carer. Had a missed scalp cancer - treated for 2 years for excema- until I finally paid privately to have it removed, last summer. Thyroid results are never right but have only been tested 3 times in last 18 months and medication not changed at all. I am convinced they don't do enough testing. Have paid privately for that - but NHS won't accept private results other than their own, so got nowhere with that. Had full blood test which shows borderline vit B12 and Folate but doc says OK. when all my symptoms indicate that I am undermedicated. Where can I get answers? There is no one to go to other than on here to compare notes with fellow sufferers and that cannot be right. I have cried buckets bu that doesn't help as my family think I am a hypochondriac; and don't want to listen, no matter how often I try to explain things to them. I am really in despair at our health service, even though I admire everything they have done throughout covid.It is the rest of us that now need attention.!

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