Help me understand

[Crazycatlady_101]

I’m 32 next and since I was 25 I have had terrible joint pain and flare ups with terrible painful stiffness and swelling. Always in both my knees sometimes both my elbows all at the same time, I feel and ache all over with fatigue!

I’ve been to the drs numerous times over the years with no help when it started I saw a rheumatologist he said I was hyper mobile and that was the end of that.

It’s carried on over the years been told it’s covid, tennis elbow, due to my weight, I am overweight which I know doesn’t help and contribute toward the pain but I know it’s not just that I used to work in hospitality for 10 yrs and could do 15,000-21,000 steps a day with no issues. I do less now but I can be on my feet all day and can have no pain but when a flare starts I struggle walking and moving, getting up and down, using stairs, the pain and stiffness defeats me.

I usually take ibuprofen and that eases it, I sometimes take it before I get out of bed to help me get out of bed and ready for work but this flare up nothings working, I’ve rung the dr because it’s effecting me at work, he’s prescribed me 500mg naproxen, take twice daily, referring me to physio and I asked for my bloods to be taken while I’m having a flare up to see if there’s any inflammation come back.

I have an underactive thyroid but never been told if I’m hashimotos (attacks auto immune system) or not. I have been reading that people who have underactive thyroid have higher risk of ra. My joint pain got better once being on levothyroxine but these flare ups are still continuing.

I’m not a dr but for years I’ve always thought there’s something more to this. I’ve asked before to do blood tests to see if I have rheumatoid factors but they come back fine but I know that still doesn’t determine if I have it.

This time the pain feels different it’s been constant and all day, I sleep with pillows under my knees because I can’t put my knees straight it’s so uncomfortable I can’t sleep, it’s exhausting then I’m tired in the day so I’m making mistakes at work.

I don’t have redness or hot to touch, both knees are stiff, swollen and hard above the knee at the sides and tender if I touch, painful if I squeeze. Every-time I have a flare up it lasts for 2-4 weeks sometimes longer but this is the worst I’ve been for a while.

Everytime I use dr google ra comes up, with my symptoms, am I right to keep suggesting this to the dr?

Thanks for reading

[sylvi]

I have RA and it never shows in my blood either so don't be disheartened by that and keep plugging thee hospital. xxx

[Crazycatlady_101 in reply to sylvi]

Thank you that’s good to know that I’m right into looking into ra because of previous bloods not showing anything x

[medway-lady]

I have Hashimotos which is extremely common in UK and it is an AI condition. But it in my experience doesn’t cause joint pain but Cronic fatigue, skin issues, and once on the right dose of thyroxine is just forgotten apart from blood tests. I don’t know if you have RA which is treatable for most people so it’s really just waiting for your blood tests to come back. You might be lucky as if you’ve got Hashimotos and I’d think your blood was checked for antibodies when first diagnosed so your GP would have an idea if it is RA. You might test positive first time and see a Rhuematologist fairly quickly. And then get access to medications. The worst bit is it’s a waiting game until your bloods return. I think ask your GP to test if they haven’t already for Hashimotos and keep a diary to show symptoms too but I’d urge you not to keep taken OTC medications which might damp down symptoms before seeing your GP again. It’s hard but your GP needs to see the problem at its worst. My joints never get hot either and only one hand is affected so RA is a strange disease affecting everyone differently. But don’t give up as if it’s RA it is vital to start on medications to relieve the issues asap.

[Crazycatlady_101 in reply to medway-lady]

Thank you for replying! I definitely need to ask about hasi’s and my blood work when I first was tested, the fatigue is a big thing for me I’m always tired( I don’t sleep well anyway) but I’ve always put that down to underactive thyroid! When I have a blood test I try not to take anything for at least 12 hours before to try and get a true reading. It’s just so disheartening when gps won’t listen, I’ve done diary’s before and took pictures but they just palm me off but I think I need to be persistent and keep up with the diary’s and logging everything like you said

[medway-lady in reply to Crazycatlady_101]

Ask for T3, T4 and TSH usually it’s only T3 and TSH tested and once the right dose is prescribed the fatigue should go. I think I’d also ask about Aenemia becuase low B12 causes awful issues. That is also treatable. Low thyroid usually means feeling cold and outer eyebrows disappear too. X

[Crazycatlady_101 in reply to medway-lady]

Thank you I’m going to write all this down! The cold is definitely a symptom for me I’m always cold and it’s to the core sometimes!

[Deeb1764]

for 2 years kept going back to my GP saying is this RA but bloods showed no! Then it came in as RA when I could hardly walk. Many people get sero negative autoimmune so not always showing in the bloods so can be trickier for a diagnosis.

Have you asked for x rays for the joint ie elbows and knees?

Is the pain on both sides of the body?

It can take a long time for diagnosis mine started with Vit D super low and B12 sweats and fatigue and the rolled up with the whole body in pain

Everyone is different but maybe a call to NRAS helpline to see if they have any guidance on this for you.

Finally keep a journal of what’s going on as this will help a lot

[Lex54 in reply to Deeb1764]

Hi I have inflammatory Arthritis/RA . I am seronegative and my inflammatory markers are rarely up. I have very similar symptoms and painful Achilles at time when swelling at worst. However I did tear my Achilles years ago and this took a long time of treatment to recover. I also struggle with pain all over my joints on both sides of my body. I struggle with getting comfortable in bed as well. I retain a lot of fluid and when not as active or don't drink enough fluids suffer very much with swelling of legs and knees and also struggle to pass urine. I'm sure that this is due to me swelling internally as well.

I have multiple medications which do help and if I am late taking these or need to stop Methotrexate as unwell find the pain much more . Currently recovering from a flare after antibiotic treatment and stopped Methotrexate for 3 weeks.

Keep asking Dr for Rheumatology referral as not getting better! Also when I gain weight and less active I am much worse ! Good luck !

[Crazycatlady_101 in reply to Lex54]

Thank you! I did ask to see a rheumatologist but he said I’ll refer you to physio so I did eye roll over the phone but I’m hoping they will see something and be able to refer me

[Crazycatlady_101 in reply to Deeb1764]

I’ve had X-rays on my knees a couple of years ago when I was having a flare up and all came back fine. The pain is always in both knees and usually both elbows all at the same time but my elbows are fine this time no pain in them but they crack a little more than normal.

Before being diagnosed with underactive thyroid my vitamin d and folic acid levels were low so had to go on high strength for a while but now I take supplements, I will ask what they’re like when my blood results come back.

[wilbertjellyfish]

I think you need to go back to the Drs. Alternatively get a private appointment with a rheumatologist, it's expensive £200 but my heart goes out to you struggling with this for so long. My RA factor on bloods is negative but my inflammation markers are always up.

[Crazycatlady_101 in reply to wilbertjellyfish]

I’m really hoping my blood results will show something, I know something isn’t right with my joints but it just feels like a loosing battle with the gp so I understand why people pay private

[wilbertjellyfish in reply to Crazycatlady_101]

My GP told me to go private at the start because to here was an 18mth waiting list and I could barely walk. It was worth it

[virtualreality]

Sorry to hear the flare ups are getting worse, that in itself makes it worth further discussion with your GP. The fact that anti-inflammatories seem to help does suggest an inflammatory component to what's going on, whether or not your blood tests show this (as others have said, it doesn't always show in blood markers - especially if taking NSAIDs). It could be palindromic arthritis given the flaring pattern without symptoms in between. Keeping a symptom journal is a really good suggestion because that makes it so much easier to share detailed observations with the GP and something there might just a ring a bell for them and prompt further investigation / onward referral. I really hope you get some answers soon.

[Crazycatlady_101 in reply to virtualreality]

Thank you! Yes I definitely need to start a journal again! I think I need to research some information about bloods not showing everything so the gp knows I knows not to palm me off by not thinking I don’t understand! X

[Impie]

I was the same since my twenties and even difficulty in teens and also told hyper mobile. Eventually after foot and knee flares that rendered me immobile in my mid fifties and being misdiagnosed with gout and ligament injury and after being told by a private rheumatologist again that I had no sign of autoimmune disease, after ten months of waiting to see an NHS Rheumatologist I was diagnosed with seronegative palendromic arthritis. I have no rheumatoid factor. I take methotrexate which helps enormously and hrt which has been a massive help. Keep pushing and suggest seronegative to your GP and ask for a referral. Good luck it's an awful drag xx steroid injections in my knees were a wonder drug too xx

[Crazycatlady_101 in reply to Impie]

I feel for you having to wait all them years for a diagnosis when you know something isn’t right! It’s so easy to give up because no one listens!! Thank you x

[Impie in reply to Crazycatlady_101]

It just becomes a way of life and our normal doesn't it xx

[Cheesechurch]

Have you had an ultrasound scan of your joints or an mri scan?

[Crazycatlady_101 in reply to Cheesechurch]

No just X-ray on my knees a few years back and that was during a flare but it all came back fine x

[Mmrr]

Ditto to what people have said above. I am seronegative, apart from reduced white cells my blood are 'normal'. Unfortunately some Drs are still not fully aware of seronegative status and RA. Keep pushing for a referral. Best wishes to you.

[Crazycatlady_101 in reply to Mmrr]

Thank you very much all these comments have me hopeful x

[Cheesechurch]

A exray does not show ra at the beginning.

[smilelines]

my daughter has hyper mobility and her joints really move differently? Do yours? You’d know if you are super flexible in some joints. My daughter suffers from joint pain. She has had ultrasounds and bloodwork. All normal. An ultrasound to check fluid levels in the joints seems warranted and ask your gp about the palandromic arthritis. I think it is concerning that decisions are being made off normal blood results as with PSA blood work is normal and even with RA is can be normal. Hope you get to the bottom of this.