To feel annoyed and misdiagnosed

[Helllllooooooo]

I’ve had chronic widespread pain for 3 years. 5 months ago after being tested for everything under the sun and having physio my gp diagnosed me with fibromyalgia.
I completely agreed after researching this as I tick every single box.
Sleep issues,extreme tiredness, ibs, flare ups, worse on periods, brain fog, piss poor memory, pain in the key areas worse, worse in damp weather and cold.
I’ve been on cocodamol, pregabalin and tramadol although I’ve come off the last two (nearly 1 pill a day) as I was gaining weight and I wasn’t comfortable on tramadol. These do/did nothing to mask the pain either.
I have a house full of mobility aids as I can’t stand unaided for long or even walk.
I have a tens and do a bit yoga twice a week if I am not too bad to keep loose and flexible and help my anxiety.
Recently I was given a mobility scooter via a charity to help me get out to spend time with my kids. This has got me from leaving the house once a month to 2-3 times a week! Huge help with having two boys!

My hands have been swelling up a lot the last few months and so I went to see a consultant.
He spent 15 mins with me and told me my hands are swollen because I’m overweight (I’m a stone lighter since Christmas due to juicing). I was then told I have been misdiagnosed and that if I attend physio again he expects me to make a full recovery in a few months...
erm, WTF!

I left and had a huge panic attack in the car park. I’ve been crying all day and I’m so upset. After 2.5 yrs of chronic pain to finally know what it was was amazing! Even knowing it wasn’t curable didn’t bother me, if I knew what it was I could manage it. Honestly I don’t believe him. It doesn’t make sense. He also said I shouldn’t even be using crutches, even though I cant stand up unaided because of pain! He didn’t ask me any questions about fibro type symptoms other than “how are your stools?”. I’ve tried everything to get better!
I’d give anything to be able to play football with my boys! Not making this shit up for shits and fucking giggles!
Nearly had a fibro tattoo last week, only didn’t due to a flare up!

Aibu?

Hi Op,

I'm so sorry! It is hard enough having chronic illness, but even worse when those in the medical profession are not supportive. I've been there ( over 30 years of it ) and it is awful. Unfortunately at these times, when you are completely exhausted and in pain, you still have to advocate for yourself until you can find someone who will provide proper care. I wish I could help, but I don't live in the UK, so I can't point you in a good direction for help. I hope someone else can.

On a side note... One thing that has helped me cope enormously is listening to books. I know it sounds silly, but when I put in the earbuds and listen to a great, well narrated story it keeps my head out of my head (if that makes sense), and I don't focus on the pain as much as I get lost in the story. It helps me to get up and get on with my day, and it keeps me physically moving which is always the hardest bit. All the best to you

I’d like to apologise.. I’m not ignoring you fibro ladies... I just feel I can’t say I have it now so I don’t want to say oh I understand yada yada yada and I feel like a fraud.

I'm not surprised you're pissed off.

In Days of Yore there was the possibility of a second opinion? I managed to get one via PALS a few years ago.

(I have a different thing wrong btw. A collection of auto-immune crap, and also a pesky fibroid for extra laughs.)

Poor you, fibromyalgia is a total bitch. I echo a previous poster, amitriptyline has helped me lots. I've tried many different med combinations and amitriptyline is by far the most helpful with the least side effects. Lidocaine patches are also good. As for the consultants opinion, get in touch with PALS. They can help you get to see another consultant. Explain that the consultant you have seen has not taken your illness and symptoms seriously. Some of the attitudes from medical professionals regarding Fibromyalgia stinks. I once sat in the waiting room of a pain clinic consultant for two hours watching her put my file to the bottom. When I finally saw her I asked why I had been passed over for so many other patients who has arrived after me. Answer: 'well you don't have cancer'. At my next appointment 6 months later I watched her do it again. After an hour and a half I lost my shit, had a real melt down and was still sobbing and raging by the time I got to the PALS office in another building. I never had to see her again, the new consultant made some helpful referrals for me and I got a letter of apology. I'm sorry you are feeling so bad, do give Amitriptyline ago, take a couple of hours before bed and it also helps with sleep. All the best x x

OP, I know exactly how you feel. Over the past few years I have been told that it is likely that I have fibromyalgia, lupus, endometriosis, kidney stones, gall stones, IC, period pain and the lost goes on. Finally got a diagnosis, turns out it was a slipped disc that was causing the pain. I'm so relieved I know what's wrong but so angry that it's been missed. I was also told by one consultant that "some people are just in pain, deal with it". Your anger is justified. Don't let anyone tell you otherwise. Xz

Thank you ladies (and gents if I missed you). I feel better knowing that.
I’m going to find a story or podcast and pray my brain switches off. Always worse when I’m stressed as I tense with makes matters worse.

I’m going to my husband to speak to our gp first, because if I go in and he agrees after all this I think I would probably be stressed, sectioned and confiscated of my crutches.
I hope you all avoid flare up for the foreseeable future for being so kind to me

That's wonderful that your lovely DH is going to be there for you! I was a teen when my mum fought tooth and nail for me. It is a great morale booster to have someone fight for you and knowing you have their support.

Just FYI, there is an American Facebook page for FMS. It has people from all over the world on it. It is very supportive and has lots of information and suggestions. Sometimes I've had symptoms I didn't know were related to FMS described by other posters, it can be such a relief to know you're not the only one.

Also FYI, audio suggestions, best I've ever found: If you like Terry Pratchett, his books are brilliantly read (especially the ones by Stephen Briggs - best narrator ever!). I forget the entire world when listening to his stories. Other amazing narrators are: Katherine Kellgren (RIP), Barbara Rosenblat, Hugh Fraser, Steven Crossley, Jenny Sterlin, Davina Porter, Emilia Fox, Philip Franks, Stephanie Daniel (RIP) and many more...
Oops sorry!

I have an autoimmune disease that affects my mobility and gives me a lot of pain.
What I have noticed is that the NHS is so stretched now that chronic conditions are right at the bottom of the heap.
I have had appointments cancelled, referrals refused. My gp doesn't know enough to help.
I recently got a second opinion while abroad (paid for a consultation in a teaching hospital). I was really impressed by the standard of care and the expertise.
I was referred to the rehab department and had some treatment that massively helped my pain.
The doctor also talked me through some options that are not available in the UK, but are supported by clinical trials.
She kept explaining to the medical students that patients have to wait a long time for appointments in the UK and that NHS treatment is restricted.
This was in a country generally assumed to be quite poor.
I am currently trying to source similar support here, but it is expensive.
My follow up NHS appointment with my consultant has been cancelled again. Leaving me to try and manage my medication and symptoms as best I can.
The NHS is brilliant for acute things, but if you have a chronic condition you are ptetty much on your own. IME.

I was diagnosed with osteoarthritis about 10 years ago,had even been to see a specialist in hospital who mentioned my nodules . Earlier this year I went to see a different specialist who said I didn't have arthritis at all but my problem was muscular instead. So do I or don't I have arthritis?

OP, I know this isn't the point of the post but eating nothing but juice three times a day is a really terrible idea and will definitely be exacerbating your symptoms. Can you seek diet advice from your GP?

I heard it on the bbc news a few months ago that fibromyalgia is a very difficult medical condition to diagnose. Many patients such as yourself have gone years just like yourself before being dignosed.
Hopefully more and more awareness will help develop knowledge of this deliberating condition. Take care x

I wouldn't seek diet advice from a GP. Their expertise in the area of nutrition is non existent and the NHS guidelines are badly out of date.

I really struggle to understand how you’re able to do yoga twice a week but yet require a mobility scooter and can’t walk further than a length of a hall? And before I get flamed, yes I know all about fibromyalgia, I’m not casting judgement, just confusion.

And definitely stop juicing and eat a proper balanced diet, that will help loads while also losing weight.

@maxthemartian So where would you recommend instead?

@peachgreen anywhere the NHS which will "helpfully" suggest aspartame and a low fat diet.

Lots of people juice, and have found it helps their conditions and health. My ibs has been much better and predictable.

@maxthemartian That wasn't my experience (in fact avoiding artificial sweeteners was a major strand of the advice) but I can believe it varies from trust to trust and also that the advice given to me could have been condition-specific (I have PCOS so artificial sweeteners are a no-no). "Anywhere" isn't a very helpful recommendation though and given OP is only drinking juice three times a day I'd suggest that any advice is better than none.

I was in a very similar state, wheelchair bound until I was referred to a specialist physio in Fibromyalgia

The first thing she’s does is put you on an elimination diet, her finding are that many patients are affected by gluten

With me it was true, off gluten and I could walk again, my body had been stripped of all vitamins and minerals with some including b12 and vit D being profoundly deficient

6 years on and I can still walk without the stick sadly I have developed spinal arthritis as a result of calcium loss

my gastro specialist says I would never have been found as I have an immune system fault which makes coeliac disease hard to detect

My physio who I consider a good friend now, has successfully treated hundreds of fibro sufferers and this is often the root cause

How long did it take until you felt better? Like I said I’ve been on this diet a number of weeks now. While ibs is much better I don’t feel much better in my pain symptoms.

That’s amazing for you though!!! Was this an nhs physio?

I’m beginning to see that nhs resources are obviously lacking. I d always been a huge advocate for them, offered my body to students, done 3 medical trials/research teams while pregnant and now this shit! I’m obviously aware it’s different teams/hospitals but certain areas are very disappointing.

On reflection, and after acting out what happened lol, to my husband; the way the doctor talked over my responses, said I wasn’t tender when in physical pain and the nurse saw me wipe away a tear and comfort me, at one point sniggered/laughed (not a huge one) I think either he wasn’t interested in my case from the off or profiled me due to my weight and/or mental health disorder.
After googling I see no connection to him and fibro, yet lots between him and other chronic conditions. So perhaps it’s a condition he doesn’t believe in like many others.

Hi there, sorry, I opened this because my DH has been chronically ill, with no diagnosis, and I can empathise with how frustrating and disappointing it is to have test after test with no conclusion other than "you're in perfect health"

I don't know anything about fibromyalgia I'm afraid, but for you all as it sounds utterly debilitating, made maddening I'm sure by people dismissing your symptoms!

My husband has never had an MH issues, is a seriously calm, gentle person, who is being driven to the edge by this. He is just fobbed off constantly, depsite being a MC, well-educated man he's essentially told he's fine- one consultant tried to tell him he had health anxiety and gave him a script for diazepam!

Anyway- sympathy and empathy to all suffering this way. And a YANBU, OP. Well done on the weight loss, keep going, and all the best to you.