Undiagnosed

[alihug63]

Hi, I'm new to this but have been reading your posts and love the support you give one another 💗 I have suffered joint pain especially in my fingers, hands, wrists, elbows and shoulders for years, with definite signs showing visibly in my fingers over twenty years ago. I'm now 54. Doctors have never been interested, giving me leaflets about non-specific pain, or if acknowledging anything, saying it's normal age-related 'wear and tear'. Two years ago I began to have days of all body intense pain and exhaustion, this would arrive suddenly, usually when I was very stressed and then gradually go. At last I got a gp who cared enough to run tests, but blood work showed nothing..my lovely go said this is often the way and referred me to a rheumatologist. Unfortunately, with the stressed state of the NHS, a year later I am still waiting! Just recently I had a night of flu like symptoms, hurting all over my skin, feeling very cold, sick, shaking and exhausted..is this normal in RA? So much I don't know, it frightens me..I'm studying

for a fine art degree after 31 years bringing up my 6 kids, it's my dream, but I get so afraid things will get much worse and I won't be able to use my hands. I take ibuprofen daily but no meds as I'm not even diagnosed. Does this sound like RA? Sometimes I question my sanity..one day of such pain I can't move without immense effort, and another fine, I can climb a mountain!

[oldtimer]

It is often very difficult to diagnose joint pains, especially if the symptoms and signs are not typical and the blood tests not helpful. Sorry to hear that you are struggling with it. But even if you get a diagnosis, it's not the end of the road as a diagnosis of RA doesn't mean that the correct treatment can be found straight away.

But it's worth carrying on and seeing if you can get some relief.

[Ali_H]

The fact that your referral to a rheumatologist has not been followed after a year breaks several treatment guidelines and I would make a formal complaint about this because at least if it's not RA (here's hoping!) you can be steered towards what it actually is.

All the best

Ali

[AgedCrone]

Even if it's not RD...you need to see a Consultant who will proceed with further tests....soon!

Have you tried hurrying up your Rheumy appoinment? If that doesn't get a result go back to your GP & tell him very firmly you can't go on like this...he is able to fast track appointments.

As you say the NHS is stretched to the limit, but you need some sort of diagnosis ...fast!!

Unfortunately with RD you need to develop a thick skin & push to get Appointments.

Good Luck!

[alihug63 in reply to AgedCrone]

Thank you for your reply! I did call the hospital about my long wait for the appointment and they explained that they have had a staffing problem, the main rheumatologist left and they haven't been able to replace him permanently, and so the waiting list has grown instead of getting shorter.. but last time I spoke with them, about 2 weeks ago they said I had moved a bit up the list and should be seen within 15 weeks .... My lovely doctor who initially referred me is now off long-term sick, and the intern I saw said that in her opinion it is highly unlikely that I have RA, as if it is something I am making up!....Frustrating - It's not like I WANT RA!

[AgedCrone in reply to alihug63]

Unfortunately Alihug your experience is not unusual....rheumatology is not a popular choice to specialise in...there are not enough rheumies to go around.

...can you pluck up courage & go back to your GP practice & emphasise you really cannot put up with (describe your symptoms- a little embellishment wouldn't hurt) & ask to be referred to a Consultant Physician ...a specialist who practices at Consultant level & diagnoses in all fields. You are not being a nuisance...you have a medical problem that needs solving.

Alternatively phone around different hospitals asking how long is their rheumatology waiting list...if it's shorter get your GP to write a referral ...but don't cancel your place on the waiting list you are on until virtually the day of any new appointment...cancellations can happen right up to the day!

Of course you don't want RA....but you do need to know what is causing your symptoms.

So best foot forward ...& get yourself an earlier appointment!

Very Good Luck!

[alihug63 in reply to AgedCrone]

Thank you AC, you have given me the push I needed, I will go back to the gp..I think that although I want to know what is happening in my body I am afraid about what that means..I hate having to take meds and have always tried to use natural remedies where possible and live a clean life..I already take bp meds, thyroxine and anti depressants and feel daunted when I read of what sufferers of RA have to contend with in their meds.. what I'm saying is I want a diagnosis but I'm very scared about what that means I suppose!

I have wondered about fibromyalgia too as the pain can be so sudden and random, then disappear suddenly too, it's so strange..

Thank you for your help and all the very best to you xx

[AgedCrone in reply to alihug63]

I was diagnosed 18 years ago ...one day I was heading into retirement playing tennis every morning...the next I had RA.....all my plans were out the window!

But I got on my own case......& now I'm on RTX & living a very nice life thank you ! Ups & downs now & then, but mostly bearable.

But you have to push,push, push. I'm a control freak & refused to just take the pills I was offered & shut up.

If you've got RA it must be treated or it will only get worse.

I have been very lucky & only had two (excellent) Rheumies all through, but it can be a rocky road.

Good Luck, let us know how you get on.

[CarolineC57 in reply to alihug63]

Hi Ali - just noticed you say you take thyroxine. You have hypothyroidism? The symptoms you have may well be due to under-treated hypothyroidism. I hope NRAS don't mind me mentioning another group here on HealthUnlocked but it might be worth taking a look at the ThyroidUK group too. Often, thyroid doctors treat by looking at the TSH result alone, not on symptoms. It may well be that you actually need an increase in your thyroid meds or a change of thyroid meds. There are lots of people on the T-UK group in that boat, myself included. Good luck!

[AuroraB]

Sorry to hear about the delay. Maybe when you've been seen you should leave a comment on the national Patient Opinion site - feedback can be good or bad. So earch on NHS Choices Patient Opinion to find the site.

nhs.uk/aboutNHSChoices/abou...

When rheumy departments are good we can also celebrate that on the site!

[Jesnaskah]

First and foremost...you are not insane...what you are feeling is real. There are so many more blood tests they could be running besides the inflammation ones.

They need to look for all sorts of antibodies and start to rule out different things.. like fibro, lupus, PMR, checking rheumatoid factor. And these are just blood tests.

My Rheumy wanted to make sure what I had wasn't a potential virus, so she even checked my blood for hep a, b, c, parvo, ebv, cbv, Lyme, anything we could think of. Sadly, after months of trial and error, it turns out I have seronegative RA.

I hope you are getting some relief with the Nsaids ...but be careful they don't irritate your stomach.

At one point, as we were still ruling things out, my Rheumy put me on Prednisone (I had high inflammation markers) and it helped dramatically with my pain...i could finally sleep after 2 months of not sleeping! Now I'm on methotrexate and trying to taper off the Prednisone. It's a never ending journey...but hopefully you have something like PMR...which may go away in a couple years as it does for a lot of ppl.

Keep pushing your doctors, even if that means calling them everyday. They should at least be concerned with providing you some kind of relief in the meantime.

I am also very new to all this. I was just diagnosed 3 weeks ago. I'm 34 yrs old. I just took my 3rd dose of methotrexate (taken once a week) and I've already lost so much hair on the front of my scalp. It's very traumatizing. I hope my body adjusts and my hair stops falling out.

I'm wishing you all the best. Keep in touch.

Jes

[alihug63 in reply to Jesnaskah]

Thank you so much Jes, I'm sorry you have to cope with so much so young..

I already take meds for high blood pressure and low thyroid, neither of which I was troubled by but which were discovered in random tests, so it feels frustrating that the one thing I have been to the doc for so many times is the one most of my doctors have been unconcerned about, despite my deformed swollen knobbly fingers which are my only really obvious sign.

Is your type of RA the one that doesn't show up in bloodtests?, I heard that was possible and am wondering as my tests were negative..

Good luck with everything, I hope you settle into taking the methotrexate and the side effects stop, you're so young to have to deal with that..xxx

[AARA]

Hi alihug63

I am so sorry to read about your situation and the problems. You have already been given lots of good advice. You just need to figure out which bit of the advice is going to get you to see a Rheumatologist asap. I had health probs. for nearly 2 years before I got to a see a Consultant. My main problem was getting my GP to do the referal. Once I got that my wait for an appointment was nothing like as long as yours.

In recent years new meds. have become available which can really halt the progress of the disease and I thought that it was acknowledged, that the sooner you could get the diagnosis and appropriate treatment the better the long term out come was, not only for the patient but even for the tax payer.

Like so many things in out poor old NHS the theory and the reality appear to be getting further apart. Just keep on pushing the creaking system, even if that at times that can make you feel a little selfish.

Whilst you are waiting you could try adjusting your diet. Works for some. Trying to develop a healthier gut has made a huge difference to me. Try putting something like Healthier Gut/Microbiome into the search on this site, or Google, or Youtube. If anything sparks your interest then get back to me.

Hope life turn a corner, in the right direction and soon.

AARA

[Neonkittie17]

Hi Alihug, I'm sorry you're having to wait so long to be seen by a rheumatologist. That is not acceptable. Can your GP write to them and say you are really suffering? Get them to see you and no more waiting. I would have wanted to lay on the floor outside the rheumy's office I think. 😕 I hope you get seen soon. Keep going with the art degree. Fantastic !! 😁🎨 It will channel your thoughts and you feel great at your achievements. You will meet lots of people and have a great reason to wake up and feel enthusiastic! Since being diagnosed with RA and having a lot of mobility issues with joint damage, I have done a full time BA Fine Art and a part time MA in Printmaking. Both exhausted me but I was very strong and stubborn! I attended more than those who didn't have any physical health issues and I produced more work than any of them! I was very productive and I loved it and I am hoping to do a PhD. I have a Boutionniere knuckle and a swan neck knuckle in each middle finger (years of pulling a screen print squeegee haven't helped!!) due to joint damage sustained whilst chebrhbg meds and a long delay but I draw/paint/print just as well as I always have and haven't lost precision. They don't hurt but just look a little awkward sometimes. It hurts sometimes to print when I've been doing quite a session but it hurts if I don't, so ..... ! Good luck with your art. Neonkittie x

[Neonkittie17]

Forgot to add Alihug, you could ask Student Support for an assistant to help with anything physical if you felt you needed to. Maybe just on a certain activity if it is too physical. Some students with mobility problems did at my art college but I didn't as I was very strong despite the joint damage. I did accept some help in deferring two modules of my BA in year 2 as I got diagnosed with Graves at that time and was very underweight and exhausted for a few months till it got under control. My painting tutor said I had to do the two of his modules over summer so I did a three month deferral which I didn't want to but he insisted. If you state your condition on your application they should get in touch to see if they can help in any way. The help can be a little or more if needed. Use it if you need to! Good Luck. There is always a way round things. 😀x