Advice

[Vonnie10]

Hi im looking for some words of wisdom on how to deal with my clinic back story is my ra flared up last year and its on going pain stiffness in both hands & wrist but no inflammation some days are worst than others last year was giving a steriod injection didnt help my blood markers are all with in range scan normal clinic said it not my ra but osteo i rang today its getting pretty unbearable & fibromyalgia was suggested i do not believe for one minute its fibro i feel like they say its fibro when they cant explain or undertand my problem. its like all.they care about are blood marker and not my symptoms its feels like its my ra clinic saying everythink else but my actiual ra . Very confusing. Got a appointments at clinic next week any helps is much appreciated thankyou.

[Luludean]

good luck for visit!!!!! Hope you can ask suestions and, get replies which mzke sense.

So many forms of RA and OA !!

When I ask for some clarification ( common sense) I get “ it’s an umbrella term!!!! »

Not much help.

[Spanelmad]

Unfortunately this is often the case when you have a rheumatologist is only worried about blood numbers!!I would keep a diary of symptoms, what it stops you doing, how long the stiffness lasts for.And get them to examine your hand joints.

[medway-lady]

Are you on medication for RA as it might have stopped working?

[Vonnie10 in reply to medway-lady]

Hi yes toclizamab maybe its need tweaking somethink added in...i dont know 🤯 its so frustrating them saying fibro or osteo when its feels like my ra which triggrrs carpel off i have my op for carpel eary june doctor at private clinic i seen few weeks ago told me when ra is flaring up it triggers cts its gone on a long time now i wished they stop saying over the phone like she did today its fibro without examinations its a bit rich giving me a diagnosis like that. Plus no inflammation isnt helping my cause & pushing clinic to say osteo & fibro they are not listening to me.

[wilbertjellyfish in reply to Vonnie10]

Toziludimab is very good at keeping your blood markers in normal range as I've found that. I'll have pain etc but bloods are better than me.

[Vonnie10 in reply to wilbertjellyfish]

Yes i said ti my gp wouldnt my bloods be normal with the toc & why are they not looking at my symptoms she agreed with me but clinic not so much.

[KittyJ]

why do you think it’s not OA ? Stiffness and pain are common symptoms so maybe talk to your doctor about pain relief to see if that helps.

[Vonnie10 in reply to KittyJ]

Its feel like my ra i dont know 🤯

[Ali_H]

might help to take someone with you to your clinic appointment - sometimes this can nudge to more thorough listening and examination on part of the practitioner!!!

All the best

Ali

[Vonnie10 in reply to Ali_H]

Ill get my hubby or my daughter she is a trama nurse

[Lornap1]

I had exactly the same issues. They actually told me I was in remission due to my markers, I was absolutely gob smacked. I kept phoning and telling them my medication wasn’t working and I’m definitely not in remission. They then said I had fibromyalgia, I point blank told them I’ve not got that because if I take prednisone the pain goes away and the pain is exactly the same as my Ra pain. They sent me to the physio who said this is absolutely shocking how they’ve dismissed my symptoms. I had so many swollen joints and tendons in my hands wrists etc. my physio gave me steroid injections in my shoulder and 3 fingers, max allowed for the week. My case was discussed a few days later and I was told that my meds were indeed not working. Over 2 years later I was still on them. I ended up getting scleritis and it was my optamology consultant who wrote to my Ra consultant to say I need the meds changed. Keep fighting, you know your own body and pain. Do not let the fob you off

[Vonnie10 in reply to Lornap1]

HI this gives me some hope.. its gone in for over a year now had bloods scans done last year sent to physio resting splints were made bloods were in range scan normal & steriod injections didnt help osteo was diagnosed but when i was first diagnosed 5 years ago steriods didnt help much then ..my flares keep flaring up this lastest flare is hell cant do much of anythink..i was giving a diagnoses over the phone by a nurse its fibro im not happy with this at all.....im going in thursday to ra clinic ill see what said i never get to see consultant its always gate keepers ( nurse) i have carpel tunnel also diganosed last year by neuro had a study done on my hand i need a little op... op will be done on 9th july consultant i spoke with 4 weeks ago re cts told me when your ra is flaring it makes cts worst this is excatly what happening my carpel is bad right my hands is in a claw position both hands are stiff and very sore it all fits but clinics narrative is i have fibro disgraceful saying i have this over the phone not even had a blood or exam done im so angry over it...i cry when i wake up another day of living hell. My family must be sick of it i know i am. thankgod you stood your ground & i will be doing the same .

[Tealblue2]

I agree in that steroids and naproxen don’t help if it’s fibromyalgia. I’ve had a fight for months. And they still say that although I have clear inflammation, have had a complete change of meds in the last few weeks etc that I may still have fibromyalgia and they will look into this later -

[Vonnie10 in reply to Tealblue2]

Let hope your new meda work.

[Sebastian247]

I have also been told I have fibromyalgia as a way to explain symptoms of brain fog, chronic fatigue, and headache. I think it's side effects of mtx and have been asking for a change in medication.

I don't have chronic pain which is so I understand the main symptom of fibromyalgia. It seems to me rheumatology diagnose fibromyalgia quite frequently for RA sufferers. In my case without being examined for it, or having the symptoms.

I'm seeing a gp tomorrow to ask for a second opinion and hope it will be removed as a diagnosis and we can get back to helping with mtx side effects.

I wonder if you should also ask for a second opinion about the fibro?

Best wishes. Seb

[Vonnie10 in reply to Sebastian247]

I hope you get some answers im going ti clinic thursday

[Sebastian247]

Hope you get answers too.

[AgedCrone]

Why didn’t you accept it could be osteo? OA often raises it’s very painful head as we progress with RA…& your description does sound very much like OA.

Why not accept any offered pain meds for OA & see how things go?

Hands,/ wrists are often the first place Osteo appears, & If you refuse to accept what your clinic offers you……you are really are on a hiding to nowhere aren’t you?

Did you just have a carpal tunnel decompression? That can cause pain during recovery as the nerves recover.Make notes to discuss what YOU feel is wrong at your next clinic appointment .

As you know…nothing is straight forward with RA…& pain in your hands could originate elsewhere…like your neck,or your elbow.

[Vonnie10 in reply to AgedCrone]

Hi AC maybe im in denial bad enough having ra but with it been symmetrical in both hands thought it wass my ra im learning as i go along i went to clinic things had settled back down after weeks & weeks of on going pain..it kicked my cts off i go tuesday for my lil op so hopefully one less problem you could be right could be refered pain my right shoulder was playing up lack of sleep with not been able to get comfortable with the shoulder didnt help Dont think nurse on phone call last week shouldnt have said i have fibro thank god its wasnt put in my notes.