Rheumatoid arthritis - any experience please?

[IHeartKingThistle]

I've just come back from the doctor. I went because for 2 weeks I have had discomfort in my hands, knees and feet and I thought it needed checking out. They feel tight and swollen but aren't really. It hurts a bit to climb the stairs.

We didn't really discuss much, but she asked if there was family history of RA (yes) then sent me straight for a blood test to see if I had it. I have to wait a week for the results.

Now I'm googling and panicking. I'm 36. It could just be nothing, right? I'd really appreciate some information if anyone has experience of this.

[shebefierce]

As I understand it seronegative ra doesn't show in blood tests. I have ra (since I was 20 so 20 years) and give myself weekly injections of embrel. It's been life changing and my life is near to normal. Sometimes a bit sore or tired, but usually okay...

[Schmoozer]

I wonder if it's reactive arthritis ?
I while back I had a tummy bug, and a few weeks later I had joint swelling, it was diagnosed as reactive arthritis which can be temporary

I had the blood tests and found the markers for rheumatoid arthritis
And since then I've had back pain
I was seen at rheumatoid clinic, discharged 😞
Even though I still have some symptoms

[IHeartKingThistle]

I had no idea all these conditions existed until now. Just goes to show what so many people are living with and people have no idea. Glad you found a treatment that's working shebe.

I also didn't know that undiagnosed Lymes disease can present with arthritis - I was bitten by a tick in July but as it was only on 15 hours and I didn't get a rash I haven't been concerned. Maybe I should ask to be tested for that? The symptoms don't perfectly match so it seems really unlikely.

Just want it to go away! My hands don't feel secure doing anything.

[thenewbroom]

Did they check inflammation levels in your blood? There are many kinds of arthritis as others have pointed out. Ask for a CRP test. Can only be good news that you are RA negative though.

Joint swelling isn't irreversible, but joint damage is.

[IHeartKingThistle]

I'm pretty sure they did so I guess that was normal too. There is no visible inflammation, so I'm not surprised by that result, it just FEELS like my hands are swollen, like I have tight gloves on.

Argh.

[IHeartKingThistle]

I mean thanks! Sorry!

[AndNowItsSeven]

It could be fibromyalgia, that feels like swelling when there is none.

[IHeartKingThistle]

Does it? Isn't that usually severe pain? I wouldn't call this severe - it's painful but not excruciating.

[AndNowItsSeven]

Yes usually, however fibro is a very variable condition it can affect people differently.

[ClaireLumia]

Hi OP, how are you feeling today? Hope you've managed to get a docs appointment.

[IHeartKingThistle]

Thanks for asking! I feel rubbish! Just knackered and stiff. Had to climb the stairs about 16 times today and it was really hard work. Drove home and it was an effort to keep my hands up and grip the wheel. Am teaching flat out this week so won't get to go to docs until Monday I think - hate not knowing what it is and hate waking up in the morning hoping it's gone away.

[ClaireLumia]

That sounds tough. Have you tried taking ibruprofen & co-codomal. I'm prescribed 400mg ibruprofen and 2 co-codomal 5/200mg 3 times a day when needed. Both can be bought over the counter so might be worth trying. If I overdo things a bath as hot as i can bear it really helps. With a glass of wine to have while I'm in there! (For medicinal purposes obviously )

[IHeartKingThistle]

Now you're talking! I usually stay away from ibuprofen as I have a history of gastritis. Think I might give it a go though.

[Sidge]

I'd be pushing for a rheumatology referral if I were you.

I had similar symptoms (morning stiffness that got so bad I couldn't brush my teeth as I couldn't grip the toothbrush, pain, no visible swelling but hands felt tight and swollen) and saw a number of GPs before finally getting referred. I was diagnosed with RA about 3 years ago. I am seronegative and had largely normal bloods (my CRP never really went above 10-12) yet on ultrasound I had massive amounts of inflammation and the consultant started me straight away on lots of medication.

Sadly you do need to push. It took me telling a GP that at 41 it was NOT NORMAL to struggle to brush my teeth and get dressed in the morning. Up until then they had just given me painkillers and sent me away. Good luck!

[AyeAmarok]

Are you having any fevers, or spikes in temperature OP?

[Candleabras]

I too self inject with Enbrel. It's a heavy drug, but first line treatment didn't work. I could hardly walk by the time I went onto Enbrel, and had to walk down the stairs side-on every morning, as my feet wouldn't bend without me being in agony.

Now, the only visible sign is joint damage, done whilst I was fannying about instead of getting treatment. I go to the gym, lift weights, and run on the treadmill, easy peasy.

Hope you get sorted out sooner rather than later. I remember the feeling of swollen fingers when they looked absolutely fine.

[Weldedparentmaterials]

Candle that's really positive. Is Enbrel a biologic treatment?

[BrainWillingBodyNotSoMuch]

Diagnosed at 15 now 32 (and 3/4!). Mine has been very difficult to control as I have fibro too. I'm also allergic to a lot of the meds, I've tried everything but now they just treat the reaction alongside the drug. I had to make the decision between career or having a family. I chose family and have two beautiful but exhausting boys. Got a very supportive DH who makes me laugh. It's not easy but I think everyone is battling something, be it emotional, mental or physical. On the plus side using my blue badge and wheelchair means I get to see parts of places 'normal' folk don't or skip queues!
Oh and I've never had a positive blood test! Good luck.

[IHeartKingThistle]

Thanks so much for your stories. It's so helpful - does anyone know if I can stop a thread in Chat disappearing?

Don't think I've had any fevers. I've never been able to regulate my temperature well though!

[Candleabras]

Yes Enbrel is a biologic I believe, anti TNF

[shebefierce]

Embrel is great, but as an earlier poster said it is a heavy drug. I was exactly the same in that I would edge down the stairs sideways each morning...and was so used to it that I stopped realising it wasn't normal! The embrel was a blessing, but initially it made me Ill, large blisters, fatigue, flu symptoms. I would go to bed to inject so i could instantly lie down as the swollen throat, headache etc would hit within moments. That has mainly passed now (occasionally it knocks me for six for no good reason that I can see!). It also raises the risk of other nasty conditions. It's a medication you would only want to take if absolutely necessary and other options failed.

[Candleabras]

Shebel, I agree absolutely with you, and did say upthread that I had already tried first line treatment. Regular blood tests to check for changes are necessary with the heavyweights. I'm very lucky that up to now I have had not one side effect, but almost 100% improvement.

Lupus is the one side effect that worries me!

[IHeartKingThistle]

OKI have an appointment for Monday morning. Still hoping it will all have gone away by then!

Took me forever to do the packed lunches this morning

[IHeartKingThistle]

Hi, sorry to resurrect this. Feeling confused by it all.

Last week the symptoms eased off to the point where I thought it was over. Thought it must have been viral or something. But this weekend it came back and my hands feel awful again. Weak, sore, sort of numb all the way up past my elbows. Knees not too bad but not great.

Got called back to GP today as they realised I'd had a tick bite in July. Had a blood test for Lyme disease this morning and they also did an X-ray of my hands but I'm not sure what that would show - inflammation?

GP was very non-committal and I have no idea what she thinks it is. She did say that if both these tests are normal she will refer me to rheumatology.

Just want to forget about it all and have Christmas. I haven't told any of my family I'm having tests and I don't intend to unless I get a firm diagnosis. DH and my friends know though.

Sorry to keep posting on this but I'm confusing myself on Google.

[Icantstopeatinglol]

I think your gps doing the right thing by testing for Lyme disease. By the sounds of it, it has similar symptoms to inflammatory arthritis/fibromyalgia as in chronic fatigue/joint pain etc. I'd do as you're saying and enjoy Christmas. The gp seems to be checking everything right and if they refer you to rheumatology even better. Hope you feel better soon and get some answers!