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?

No you are being very reasonable!

Poor you. So your GP diagnosed fibromyalgia but your consultant doesnt?

After two years you should be on preventable drugs instead of just painkillers.
You need to see your gp again and ask for a referral to a rheumatologist.
What a pain for you to go through.

have you been tested for rheumatoid arthritis ? NHS fobbed me off for over 12 years with ibuprofen...Went to the doctor in Spain and they bothered to do a blood test which came back as a textbook case of R.A. bow on medicine which has removed 90% of the pain. I'm in less pain than I have been since I was 16. I was practically told not to make a fuss by the GP in the UK. Maybe ask for a blood test for rheumatoid factor and C Reactive Protein....

Thanks that makes me feel a bit better.
I’m going to book to see my gp, however this consultant is the head of department in this trust! I now have a sinking feeling the gp won’t want to undermine him.

I was in pain during the physical examination, the nurse was comforting me. He then said I wasn’t “tender to the touch”! 1 the nurse noticed and 2 I’m regretting last weeks botox now - obviously I’ve been left unable to show expression

He was a rheumatologist.
Yeah I’ve been checked for RA also. Literally was tested for everything, twice. Had X-rays too.

Not the gp said that the drugs I was on he wouldn’t try anything else. Thinking of it that was another reason I came off pregabalin so I could ask to try something new and hopefully better. That was for pain and my depression

I am in the fibro club!! My treatment has been fantastic. Soo my drug regime goes:
Citalopram, gabapentin, a stomach medication, co codimol, etolyn and if the pain is too much a morphine patch. It’s a lot but i’m living my life, i’ve Got a job. I thought that I would need a mobility scooter but I use a stick occasionally, I pay for reflexology.

I’m a HCP and I can tell you that where I work there is a degree of skepticism about the diagnosis of fibromyalgia. The majority of people seem to have documented mental health problems prior to onset of symptoms and are often viewed as resistant to physical therapies that might help them. I’m not saying that they’re right but this attitude is definitely out there.

If you work in my trust then maybe that’s the issue... also have a diagnosis of borderline personality disorder

Op your comment about botox made me laugh.
Check out the fibromyalgia website.
However if you have had all the blood tests it' baffling that your illness isnt being revealed.
Must be so frustrating.

i was on cocodamol 30/500 x8, tramadol errr 8 a day can’t remember dose. Quetiapine 25mg plus 400 at bed. Citalopram can’t remember dose and 4 150mg pregabalin until recently. Pain was there with them so after giving them 2.5 years to work, I felt they were doing more harm than good. Gp wouldn’t give me anything I’ve been easily 6 times just about pain in the last 8 months.
I do take cbd, magnesium, vit d3, melatonin and a multi vitamin for good luck. It’s been a nightmare honestly. Fed up of being in no mans land.

Well OP....I DO believe in Fibromyalgia...but are you sure that your pain isn't weight related?

How overweight were you when all this began?

I imagine your pre-existing mental health problem is probably making it a lot harder for you. Healthcare is a horrible, judgemental place.

Fibro doesn’t show up in tests though, or so I have read from everywhere I’ve read.
I’ve done so much research because I hadn’t even heard of it when the gp said it. It 100% is me! It makes me really upset that myself and others could be being ignored of all our symptoms because of a prior mental illness. Especially as mental illness is linked.

When this started I had just had my son and I was 1 stone over weight.

Saying that, I actually was diagnosed with my mental health disorder after the pain started.

I have fibro too. Its an utter c**t. Doesn't seem like the reumy you saw is sympathetic to it so id suggest a second opinion. I've had fibro since childhood & not able to work, which I HATE! I do have 2 kids with ASD though & ADHD myself, plus a DH who barely lifts a finger, which is hard enough work lol. Currently I am on Robaxin muscle relaxants. Not many people with fibro seem to be on these for some reason, but they're pretty good when you start using them & help you sleep too. I also have slow release tramadol & strong co-codamol. I also will throw ibuprofen at it, CBD oils & normal tramadol, plus heat & ice & various creams & rubs, Alaesal is cheap & good, as is biofreeze. Sometimes nothing works. Diazepam can be good for a flare, but hard to get. The Pregablin will be the culprit for weight gain. It also kick-started early menopause in me. I had my first hot flush on honeymoon.

Who misdiagnosed? Your GP or the consultant rheumy?
Fibro is often used as a catch all diagnosis by GPS when it is unexplainable pain. That frightens me for you.

My rheumy said the difference between a patient with a fibro diagnosis and a rheumatoid arthritis diagnosis was ability to work
Those with fibro generally are unable to work so it must be pretty globally devastating

I was also this big in the past, in fact bigger and I had no pain at all. I was holding down my own business easily.
Sorry for the disjointed messages. Like I said piss poor memory

So you're not really that overweight?

I have fibro and it's bloody gut wrenching being ignored or labelled fat/lazy/mental by HCP. Does anyone else have really intense heat come from a painful area? The worst pain I have is in my back at the base and you can see it turn red and feel it become hot but not one medical person I've asked about it has looked into it but I can't find any information online about it either?

I’m unable to work, stand, walk further than the length of my hall.
I homeschool 1 son from my bed. My husband is my registered carer and he does the outdoorsy stuff.
I had one flare up last 4 weeks and I didn’t leave the bedroom. I have a 3 storey house and only bathe once a week because the pain is that bad I’m left in agony for days. Even wearing a handbag hurts my wrist and shoulder for hours. And don’t get me started on when my youngest jumps on me, in left needing all sorts of drugs as that can leave me tender for a day or two.

I feel misdiagnosed by the rheumatologist, he didn’t ask fibro questions, he didn’t check the typical places he was more interested in my hyperextended thumb and stomach hair which I was given a blood test for pcos by gp last week for but I’ve yet to go.

Yeah I get hot pain in my lower back, and it turns red. That’s my worse area. It happens in my fingers too, when I use them a little too much (texting) they swell up go red and stiff. I only went about my hands, and I didn’t even get a reason for that.

I’m a size 18. But I know it is down to the drugs. I was warned about those for weight gain but I took the risk because they were suggested to me.
I didn’t eat all that badly. Porridge, chicken salad sandwich and a bag of crisps and an average meal depending on the offers on the meat at Aldi and whatever veg and side we fancied.
Now I am on 3 juices a day. I was determined to get this weight off by alternative day fasting. Stone since Christmas on just juice to drop the weight quicky.
I’ll be sticking to this now, if I can prove it isn’t the weight perhaps I will be heard.