Talk to me about join pain for years and years with no arthritis markers?

[cultkid]

My hand, elbow, wrist, knee, foot and most recently my hip have all been having deep dull aches for years
They actually swell up. They seemed to be bad when it was cold but now it seems to be an issue when I get sick or run down they ache so much I can hardly use them
I have had blood tests for arthritis done

In February I got a sore throat
I then got another one in April
Since December when I had a virus of some sort I have had a constant low grade fever with some days of it being closer to 39

I am not over weight
I am 27

I will speak to my pain doctor when lockdown eases up
But is there something I should be looking for? It really really really fucking hurts

Cult kid big hugs to you.

Sadly it seems yet again you are a patient that is not listened to, which sadly is much more common for females

Yes a letter and a GP appointment insisting on referrals. If I were writing I would include asking why you are expected to live with the level of excruciating pain without appropriate NHS support and why are they not listening and exploring what is wrong in a holistic way as there is clearly something wrong that is in need of further investigation to reach diagnosis and provide treatment options.

Sadly it sometimes helps to take a male partner with you to these appointments

See this is what I mean if I itch myself a tiny bit look what happens

@RandomMess

I just feel so defeated
I could go private but I have spent in excess of 40 k trying to sort my back and kidneys and I seriously resent it not being available for help more locally and for free
I adore my pain consultant but driving to Harley st from Kent is crackers and means I need to be driven as well as I get sedated for paravertable blocks
The steroids cause persistent PV bleeding and I hate bleeding for 5 months after them it's gross it's disorientating and I get a chubby face

I’d ask to be tested for coeliac op, not everyone has digestive issues.

I have called Bennenden and a GP will call me back at 10.20 what a wonderful service

You need ypur ANA markers in blood checked for Autoimmune disease. Its a simple test and your gp can do it. Have you looked at Scleroderma? I have it- its a rare disease and very hard to diagnose. Most doctors havent even heard of it. Its a autoimmune disease quite similar to lupus( in fact they often overlap)you have a lot of the sypmtoms. You really need to see a rhuemy- push push push and let us know how you get on

I am at a&e the GP at Bennenden said I need to be reviewed as it is acute having a fever for 3 months
And he is worried about rheumatic fever

In my 20's I had painful, swollen joints, mouth ulcers, itchy skin (tiny blisters, total overreaction to a tiny scratch) and no blood tests for arthritis issues.
I eventually saw a rheumatologist whose friend had recently been diagnosed with coeliac disease with similar symptoms, so tested me. Started a gluten free diet after a positive result, and never looked back. I couldn't believe how much better I felt after 2 weeks, and loads of things that I thought was just me, turned out to be coeliac

I've been referred to rheumatology

Hi, I just wanted to come and give an update, the hospital called me yesterday and gave me an appointment to see the rheumatologist today at 10 am. I'm very surprised to have an appointment so quickly.
My GP referred me on Friday..

Now I feel even more worried that something was wrong

I wouldn't worry, I think referrals are quick at the moment because of covid.

I'm going to a specialist clinic for 8.45 this morning after being referred at 11am yesterday.

Good luck for the appointment.

I hope he feels he can offer you some immediate relief whilst they get to the bottom of diagnosis

I was very like you. None if my bloods came back with anything wrong. The constant pain was awful. Finally after 6 months of seeing the GP at least once a month I was referred to a Rheumatologist. It took another 18 months until I got a diagnosis of Lupus. 20 years on, I now have Fibromyalgia, costochonderitis and CFS in the mix. Pain is more controllable at the moment as seem to have a good mix of steroids and painkillers, but have been on a lot of different drugs to get to this point.

It's not arthritis he doesn't think he thinks it's an auto immune disease

Or maybe reactive arthritis

waiting for more information

Hi did you ever get to the bottom of this OP?

cultkid

Hi SmellyBeard I came across your comment on a thread regarding painful joints after childbirth. I'm having the same issue (had a baby in feb of this year and joint pain started about 6 weeks later). I'm still BFing. Did your joint pain eventually go away? Thanks

I’ve also just come across this thread today. Outdated username but I had baby number 2 in June. Was anaemic in pregnancy and had an iron transfusion. They repeated bloods 4 months postpartum (due to blood bottle shortage, it took some time). I was low in B12. However, even after injections every other day for 3 weeks, I’ve been getting worse. Joint pain in my ankles/feet/elbows. It’s got to the point where I can’t bend my fingers in the morning and have no strength in my grip. I’m paying to see a private rheumatologist next week. Did they ever get to the bottom of what was causing it for you? And do you feel better?

Maybe try the carnivore diet for three months. You might be chock full of oxalates and other plant antinutrients. You will dump oxalates for a while which is unpleasant but the anti-inflammatory side of the carnivore diet is a revelation to those with chronic inflammation and pain.

mum0fone - i have really bad stiffness in my fingers too after rest too or after gripping something for a while. Was referred to rheumatology in May and finally saw one in Sept. My inflammation markers were up but bloods negative for rheumatoid arthritis markers and xrays were normal. Consultant thinks I could have reactive arthritis following a sore throat. She gave me a steroid injection (kenalog) which has been a game changer. Still have sore/stiff hands but are so much better than before. Has also helped my achilles tendonitis (which is another sign of reactive arthritis). Meant to see consultant again this month for follow up but am on waiting list.
Still a chance i have seronegarive rheumatoid arthritis.... will have to wait and see.
Good luck with your appointment. Hope you get some answers/treatment

@mum0fone Did you ever get answers after being referred to rheum?

I did! I was diagnosed with Post Partum Rheumatoid Arthritis. It's 2 years since initial diagnosis- it was a long road, and to be honest we're still on it! If you're feeling fobbed off, I would urge anyone to continue pushing until you have some answers!

Thanks for getting back to me @mum0fone
After various other specialist appointments for the wide range of symptoms I have, I finally seen a rheumatologist yesterday. She thinks I have fibromyalgia, as I have no inflammation that she can feel in my joints. However, I've been sent for an xray and ultrasound, plus my third MRI, to 'rule out' psoriatic arthritis.
I also had a huge range of blood tests yesterday, although I have already had a lot via my GP which all keep coming back ok.

The thing is, I have nail psoriasis, dry eye and a lot of other psoriatic arthritis symptoms. The pain is definitely my joints, not this 'all over' pain that fibromyalgia seems to be. I also don't get the complete exhaustion and fatigue that they say fibromyalgia brings.

I'd class my mild pain at the minute, not debilitating, but it's definitely there. My joints are very stiff, and I'm 35. But if it is arthritis, I obviously want it picked up early and not dumped with a fibromyalgia diagnosis.
She did say though, that if the scans come back ok, it doesn't mean I won't develop PsA in future, especially as I have nail psoriasis.

I'm glad you have had a diagnosis and therefore, hopefully, the correct course of treatment