Hi, I'm a newbie!

[mumsyme]

Hello everyone this is a long story but will summarise:

October 2017; I feel fatigue and under the weather for a few days, then all my joints are painful and stiff, especially my hands and feet which lasts for four weeks. GP takes bloods, everything normal, diagnosis of fibromyalgia.

February 2018; similar thing happens. I think I have SLE, but again bloods come back normal.

May 2018; same thing again, bloods taken, but GP thinks it's mental health which is incorrect.

October 2018; Knuckles and ankles, painful, stiff and swollen. Lower back stiff first thing in the morning, difficulty sitting up. Go back to the GP, who says its not RA but some kind of arthritic condition triggered by a low level bug and the swelling will go down in a few days but to come back in four weeks for blood tests if swelling is still persisting.

November 2018; blood tests satisfactory, no further action required.

It is now February, for four months the pain and swelling in my hands, wrists and ankles have got progressively worse. Both my little finger joints (left and right hand) above knuckles are swelling more causing a slight crooked appearance. I had to make a verbal complaint to surgery who finally referred me to rheumatology on January 16th 2019. Only problem is that the two hospitals which take referrals have not had a referral for me. NICE guidelines state that anyone with normal blood results but physically shows synovitis must be urgently referred to rheumatology. This has not happened with me. I wrote a letter of complaint to GP surgery with photos of my swollen hands, ankles and feet which my husband handed in today. But, I have not received any communication from the surgery. While this rumbles on, the swelling and pain is getting worse, with my fingers now beginning to swell just below the first joint. I've had no pain relief or steroids to help with the pain and inflammation. I just don't know where to go from here. Most of my joints above knuckle joints are swelling now and symmetrical.

[Shalf]

Hi there

Feel for you!

This happened to me too with the surgery. My forefinger was swollen and beating like crazy and very painful.

I ended up going to A & E through nhs24. I was immediately sent to the Rheumatology hospital where I was diagnosed with seropositive RA. My disease was very active and I was treated straight away.

Do what YOU feel. Don't wait on admin in the doctor surgery if you are in pain.

All the best xx

[Nessa28 in reply to Shalf]

Look Susie gok again , fibromyalgia . Don't wait if you're in to much pain and inflammation is evident why is your doctor not putting you on steroids etc . I was very lucky both my GPS specialities was rheumatology so they thought outside the box . But I repeat but it took 9 months to see a rheumatologist so push . Good luck hope you feel better soon and less pain .🤗💐

[Shalf in reply to Nessa28]

Sian, it's sticking out like a sore thumb!

Mumsyme, We have been chatting about this ' diagnosis' of Fibromyalgia. Otherwise known as GOK. ( God Only Knows). It appears to be the plaster that covers every pain, fog brain, fatigue, the whole package really! when docs can't diagnose a specific problem or worse - treat the problem. It appears this way. I also got told I have Fibromyalgia ( GOK)

[Nessa28 in reply to Shalf]

I was thinking about this gok I remember back to when I first heard of fibromyalgia and I think it was given as a diagnosis if they thought you were depressed etc as it was always a phantom diagnosis the doctors who go oh yea fibromyalgia along with ME but people have been so ill and disabilitated and left with a lifelong complaint addicted to pain killers and ant depressants as the doctors never get to the root problem . Am I wrong I remember when I was told I may have it about 17 years ago I started to laugh at the consultant and I told him I wasn't mental and wasn't making up the pain to which he discharged me . I feel for so many as this is the way forward for the NHS tell everyone it's gok 😱xx

[Shalf in reply to Nessa28]

It's the meds they are using to treat this ' condition' . Antipsychotic drugs. Antidepressants, Acupuncture, CBT, Anticonvulsants to name a few.

I would love to hear from anyone who is on or has had successful treatment for Fibromyalgia.

[Mmrr in reply to Shalf]

Shalf, I believe Glasgow have a new , successful programme for people with fibromyalgia, which involves physio supervised exercise , psychologist led CBT and self management and consultant support. Not much help to you , I know, but a different approach rather than a heavy drug regime. Edinburgh is just so far behind in many aspects of rheumatology, I despair.

[ruth_p]

You could go to a walk in centre or as Shalf says go to A&E. You should be taken seriously by your GP and the way they are treating you is not ok. Phone the NRAS helpline for advice and contact the CCG as they are in charge of the GP surgeries. Good luck x

[Ssmart]

Don’t be put off by this, but don’t pin your hopes on a&e either...I went to a&e when I had my first flare I had NO idea what was wrong with me, RA hadn’t entered my head, I was crying and my whole hand had severe pain I Couldn’t move my fingers without a wave of pains shooting up to my elbow and beyond. I was given an X-ray at a&e to which was told nothing is broken there’s nothing we can do for you, you

Need to go through primary care, I was sent home and although I felt better for having it looked at he pretty much told me a&e was for accidents and emergencies only, and that I should see my GP.

It’s hood to know some A&e departments are more thorough and kind than the doctor I saw at mine.

He could have at least given me some form of pain relief 😢

I still don’t understand exactly what happened to my hand to be honest, but the other side did the same thing a week later. My “normal” stiffness/bruised/achy/ feel broken joint feelings were like a tickle in comparison to that pain.

I think you should go back to a different GP and indeed if you aren’t in Suffolk in the UK then do try your a&e department. I bet it depends on the knowledge of the doctor you see, mine said perhaps carpal tunnel... see how it goes... pah ha ha

Indeed NRAS helpline might be a good idea as Ruth suggests.

Keep up with your complaints/photos and I truly hope you get some help and a diagnosis and some relief xx all the best!

[Shalf in reply to Ssmart]

Bloody awful! I had to be seen by an NHS 24 doctor first. Perhaps if I had presented myself to A & E it may have been a different story but still, if in acute pain they have to treat you. X

[Ssmart in reply to Shalf]

Yep I wish I’d gone to out of hours gp first, and in truth there wasn’t a lot a&e could have done for me, it went on it’s own within a few days of me staring at my hand and crying not knowing where to put it as no position helped, only to reappear in the other hand lol 😂

I liken the pain to stabbing myself in the palm with fingers so swollen they can’t move and radiating up arm.

I was just so scared wondering what was wrong with me, but not sure what else they could’ve done without me having a diagnosis, maybe they’d have given me an injection or something, who knows! X

[Shalf in reply to Ssmart]

I can understand. Even a bit reassurance makes a big difference and yes, perhaps a strong painkiller too! Hope you don't have that experience again. X

[Mmrr]

In my experience you need to keep pushing and pushing to be heard. If your GP won't refer you again , ask her/him to provide you with a letter explaining why ? ( for your records ) .

A freedom of information request (FOI) to the practice manager for all your notes / blood and other results will give you access to everything you need to understand their thinking.

The FOI causes the practice a lot of work, but it is your legal right and they cannot refuse. Stand firm.

In my experience things changed when I upped my game and accessed everything about me. I am now copied into everything written about me and it scares the hell of out everyone, but you get better care.

A very sad state off affairs.

[Nessa28 in reply to Mmrr]

I totally agree if you can stand firm and refuse to back down . Your treatment is normally better which is so wrong as when you're ill you need all your strength . I just feel for those they get pushed into a corner . Good luck xx

[Mmrr in reply to Nessa28]

Yes, medical power can work in both ways for the patient, they can open and close doors for almost everyone they come into contact with. For whatever reason, you end up on the wrong side it can be near impossible to get on the right side again. All it takes is for one Dr, to disbelieve or misdiagnose you and its often then a locked door you are facing. In my case it was a GP who failed to understand the complexity of what was going in with me, despite repeated visits to her. By that time my notes were littered with comments such as .....claims she is not depressed, refused antidepressants again......lots of e clamation marks beside comments I had made.

I've found by asking for everything in writing, and to justify every decision the doors opened again.

Not everyone is able to stand up to Gps, for whatever reasons. But, I would encourage everyone to be strong, it's your health.

We all, need to look them in the eye when unhappy with repeated incorrect decisions and politely say, thank you for your opinion, can you write that down for me and provide me with a copy for my notes ?

Follow up with.....Or would you prefer I used FOI, whatever is easiest for you Dr ?

Suddenly , your world will change.

[Shalf in reply to Nessa28]

So do I Sian.

[Shalf in reply to Mmrr]

Good on you for not giving up! It takes a bucket load of determination and energy! I hope what you have achieved has shaken the system up to our advantage! They may not be so ready to oust us out the door with a script for anti depressants and/or some cheap painkiller. It's incredibly important RA is treated early! I unfortunately wasn't and suffered the damage for it. Doctors need to action tests sooner!!

[Mmrr in reply to Shalf]

They are GPs and as such cannot know everything, they are not expected too.

My alarm comes when as GPs they disbelieve people who normally do not attend their clinics (I had not been seen for 4 years prior to reporting my initial symptoms, and that vist was about knee and hips problems I had, when I asked for some guidance on the NSAIDs I was taking !).

And then not actioning a rheumatology referral , until a physio I saw privately wrote to her saying he would recommend a referral. I had visited her 10 times in the intervening 4 months.

I would not and never will accept a situation like that again.

By that time my notes were littered with unprofessional comments about my anxiety and depression, I was doomed from then on in until I stepped up and challenged.

When I feel well and have a good treatment plan, I intend to write to the senior partner, not to complain , but rather to ask my situation be used as learning opportunity. What might have happened had I been referred on say my 3rd visit to the GP and all the anxiety crap not included in my notes ?

I don't know if you saw on the news last night the 49 year old nurse who died of cervical cancer, despite being told all was well 6 times previously. She was diagnosed after going privately. Drs get it wrong, they are human, but 6 times ? I am inclined to think she was labelled as a 'problem patient' and not taken seriously. Just like many of us.

[Shalf in reply to Mmrr]

I agree and understand everything you have said. It's just despicable that anyone should feel the need to do that for truth and for health.

Re the cancer woman, I literally cried when that came on the news. My hyper sensitivity to these things kicks in easily! Just devastating! I'm sure you will make a big difference to a lot of people how they think and act on their own health now Marie. Personally, I thank you. X

[mumsyme in reply to Shalf]

I've just watched the video of the couple. That poor woman having all that crap to deal with while dying. Something so fundamentally wrong with her situation.

[Shalf in reply to mumsyme]

It's hard to believe it's real !!

[Fruitandnutcase in reply to Mmrr]

I think there is huge variation in how people are treated. I was SO lucky that when I saw my GP - not one I had ever seen before either - he fast tracked me to a rheumatologist. I said that my fingers weren’t distorted but he said with fast treatment it shouldn’t ever come to that - yet I have met so many people with sore distorted finger joints who have just been told to take a paracetamol. It seems to be the luck of the draw doesn’t it. We almost need a to make up a map of the U.K. showing where treatment is good or bad for each condition we have.

[Gnarli]

I'm truly sorry you're having so many problems. Unfortunately, not being heard by GPs is quite common and you need to be firmly and politely insistent that investigation and treatment are needed because your levels of pain are not normal. I wish you well

[mumsyme]

Thank you everyone for your responses. It's quite disheartening isn't it that we're seen as problem patients? I'm always asked about my mental health. As of 15 minutes ago my situation has got even worse; the letter of complaint with photos my husband handed in yesterday has got lost. The woman named as practice manager on the website who I addressed the envelope to apparently left a year ago. So my husband is now waiting for the surgery to phone back with news of finding the letter. I think that I am going to take the complaint higher. I will give them a chance to find my letter of complaint.

[Shalf in reply to mumsyme]

It never rains but it pours! That is so annoying! Hope they find your letter. X

[AndrewT]

Dear mumsyme,

I don't know what is 'Wrong', with you mumsyme, but....What I DO know is you need Medical Help! If you can't get a GP appointment, go to a Walk In Centre- yes you will have to wait, sometimes a few hours, but you WILL see a Doctor. Explain, to Him/ Her ALL your symptoms, how long you have had them- above all 'Lay it On' Thick! Yes, I know, this isn't 'Like' you or 'In Your Nature'- but, think for a minute here- has this approach got you anywhere? (a clue here, read your own Post). Now, and I DO appreciate how hard this will be, go back and 'Raise F..King Hell' or, at least, fight your Corner.

Just another thought, I don't know how possible this will be, but can you Change your Doctor's Surgery? I only ask because I did this, about eighteen months ago, and have Never 'looked back'. (I can even order, my Drugs, 'On Line' and then pick them up at the Local Chemist.) It might be worth 'Looking Into', this idea.

Whatever you do mumsyme (lovely 'Name' by the way), please know, you have Friends here.

Warmest Wishes

AndrewT

[rab1874]

Definitely take it further as they need to stop the damage being done to your joints before it’s too late xxx

[mumsyme]

Thank you all! The Practice manager phoned me around lunchtime. She said she's read my complaint and passed the letter with photos to my GP who will sort everything out for me. I very rarely see my own GP, last time was November 2017. I burst into tears on the phone and said I was fed up and in pain. The manager said that she'll get my GP to phone me at the end of the day to have a talk with me.

[AndrewT in reply to mumsyme]

I don't like saying this mumsyme, I DON'T 'Normally' Rock The Boat but.....Give 'Em Hell Babe- or, at least, make your POINT Strongly! It seems that, the Practice Manager, Might (just MIGHT) be Someone you can Turn To.....Ok I'll take off the 'Rose Tinted' glasses!

Can you let us know how you 'Get On' please mumsyme. Our Love, and Support ARE with you.

We are ALL 'Rootin' for you Babe.

AndrewT

[New50]

Moan your head off and tell the docs to refer you back to rumy. I went to the hospital and asked them there once they told me it wasn’t Achilles tendinitis, it was the chap who did the ultrasound that suggested it. Then I went back to docs 4 times over two weeks and finally after 18 months I got and appointment with rumy In fact as there were two requests I went to both different hospitals but I’d had enough of being ignored. Still waiting mind but had an mri and once the hospital of my choice gets all the details I was told I could start meds. So waiting for a letter to see the nurse. If I don’t hear anything I’m going to phone phone phone till I get a response I want as it’s now over two years since and still swollen n in pain. So just keep pestering them xxx