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Rheumatoid arthritis - any experience please?

(81 Posts)

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IHeartKingThistle Thu 19-Nov-15 13:26:47

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.

IHeartKingThistle Thu 19-Nov-15 15:49:12

Nobody?

CoteDAzur Thu 19-Nov-15 15:53:27

I (early 40s) was sent to a rheumatologist to check for RA because one knee was painful and scans showed one side of the cartilage was damaged.

Results came back negative. I don't have RA. The reason for the used cartilage was diagnosed and now I am pain-free.

In other words, yes, it could be something else. HTH.

Mcullumswoman Thu 19-Nov-15 15:59:07

I was diagnosed at 22 with RA. I am now 40, if you have any questions I would be happy to try and answer I can only offer advice from my own experience which is by no way conclusive.
At this stage I would wait for a confirmed diagnosis before reading up too much there are alot of worst case scenarios out there and there are also lots of things it might be other than RA my brother had a tentative diagnosis over 10 years ago but with an intensive dose of ibuprofen has had no further symptoms.
In the meantime if you can try and get some rest and not to worry too much.

gingermary Thu 19-Nov-15 16:06:55

I had a similar experience and was referred to a rheumatologist. I was diagnosed with undifferentiated connective tissue disease which is related but not the same as ra. It is managed by medication and I feel like a new woman now, I hadn't realized just how much it was affecting me. So any steps towards a diagnosis are positive.

Tagetes Thu 19-Nov-15 16:10:33

I have had RA for over 20 years. I'm now 55 and if anyone had told me then I would still be living a normal life I would have flatly refused to believe them. I can't deny it's had some impact (my hands are the worst affected and are a bit sore and swollen at times) but modern drugs - and the practice of going in hard with them early on - mean that the disease can be arrested and controlled right from its early stages. It affects different people to very different degrees and there's lots of help available - for many years it's just been part of who I am. Please try not to worry! (easier said than done I know)

IHeartKingThistle Thu 19-Nov-15 17:21:11

Oh thank you so much for the replies, reading them has made me feel better. Going to sit tight and think positive!

CigarsofthePharoahs Thu 19-Nov-15 17:32:51

I'm in the same position as you op. My blood tests came back inconclusive for ra, but I am anaemic! I've been referred to rheumatology anyway, my appt is in a few weeks.
I have to admit, I'm nervous. I wnt to know what's causing all my pain and restricting my mobility slowly, but at the same time I don't, iyswim? I'm also worried they won't take me seriously and I'll be fobbed off again, like my previous gp did.

wonkylegs Thu 19-Nov-15 17:44:25

I was diagnosed with RA at 19, I'm now 36. I wouldn't panic. First get a diagnosis.
Meds have come a long way even in the time since I was diagnosed and my current meds are fab. Unfortunatly I can't take them because I'm pregnant smileconfused so I'm just on steroids & painkillers until baby is cooked... But I have fab medical support and I've done this before.
It has changed my life but hasn't stopped me doing anything, sometimes I just have to take a slightly different approach.
I was really really ill at the start of my disease and pretty disabled by it, now people generally can't tell unless I tell them about it. I do still get pain occassionally but I'm much better at dealing with it.

IHeartKingThistle Thu 19-Nov-15 22:09:53

Thank you. It's great to hear some positivity. Cigars I hope we both get positive outcomes, whatever they may be!

IHeartKingThistle Fri 20-Nov-15 20:25:09

It's pretty bad today, whatever it is. Struggled with my hands and painful on stairs Scared if it's positive, scared if it's negative and I have to just put up with it.

Hulababy Fri 20-Nov-15 20:28:55

I don't have RA but I do have Psoriatic Arthritis. I was diagnosed at 37/38y though had had milder symptoms for a couple of years or so prior to that.

I'm 42 now and take plenty of medication to keep the flare ups down. I still have some symptoms daily but they are more manageable and because of the diagnosis I know there are things I can do and take to help myself.

choirmumoftwo Fri 20-Nov-15 20:33:03

Remember that positive antibodies don't necessarily mean you have RA, especially if there's family history, and negative antibodies don't mean you don't have it. It's a clinical diagnosis so rheumatology opinion is crucial. As others have said, the outlook for RA is much better these days. Wishing you all the best .

IHeartKingThistle Fri 20-Nov-15 20:41:21

Thank you choirmum, I didn't know that. I'll push for a referral if I still feel like this when the results come back next week.

Really appreciate the advice.

bertsdinner Fri 20-Nov-15 20:42:17

My sister has psoriatic arthritis, which is similar to RA. She takes medication for it that helps a lot. At the start of her illness, she had a lot of pain, weak hands and her fingers were warping. At one point, she couldnt hold a towel and had difficulty walking. With the meds, she is more or less back to normal.
She gets flare ups and needs help with some things, like opening coke bottles, but its much more manageable.

IHeartKingThistle Fri 20-Nov-15 23:25:09

I didn't feel secure holding a pen today. I hope that doesn't persist as I'm a teacher and spend half my life marking!

wonkylegs Fri 20-Nov-15 23:33:35

I'm an architect and when I was diagnosed I was at uni, fine line drawing and model making.... I thought it was the end of the world but actually with the right treatment and a few tricks (pen grips, wrist supports, taking breaks) I could keep going. I made it through uni and into my career and although computers have taken over a lot (they pose their own challenges) I still draw.
If you are struggling I'd advise getting a foam pen grip - they are cheap and little but can help.

IHeartKingThistle Fri 20-Nov-15 23:44:58

Thanks wonky.

IHeartKingThistle Sun 22-Nov-15 18:40:13

Can I ask a question? I've been having problems with my hands - in the morning I can barely grip and they're bad most of the day, but by the evening I've been getting the strength back in them. Then next morning they're bad again. Does that chime with anyone else's experience?

wonkylegs Sun 22-Nov-15 19:20:33

Morning stiffness is a classic sign I'm afraid. Mine gets better by the middle of the day and then worse again in the evenings but not as bad as the mornings.
If mine are really bad I soak them in warm water in the morning and do some gentle exercises - touching fingers together, opening and closing fist etc. gentle and slow but it gets you moving. I get whole body stiffness especially in my hips and knees so I often wake early but take about an hour to actually get out of bed. Then a long warm shower.
Mines generally better when I'm on my meds but because I'm only on steroids at the moment I've started to have difficult mornings again.

thecatneuterer Sun 22-Nov-15 19:27:11

If it is RA there is a new wonder drug out (which I've forgotten the name of but can find out). It's recently been approved by NICE. My mother was diagnosed with RA about three years ago and was accepted onto the trial for this drug. It has put all her symptoms into total remission and seems to have no side effects. So it is as though she never had it.

If it is RA the sooner you start taking the drug the better as joint swelling etc is irreversible, so if you start before it starts to have an impact you should have as good an outcome as my mother.

If you want to know the name of it pm me and I'll ask my Mum.

IHeartKingThistle Sun 22-Nov-15 19:38:28

Thank you so much for responses. If diagnosis is RA I may be doing a lot of PMs!

DrewsWife Sun 22-Nov-15 19:44:39

My teenager has enthesitis and psoriatic arthritis. Diagnosed aged 7. Now 19.

Pain management for her is essential as is a good rheumatology nurse. Swimming and gentle exercise. Stopping moving her joints is a bad option for her as she always feels worse

IHeartKingThistle Tue 24-Nov-15 16:40:38

Bloods came back negative, no further action required.

I think further action is required! So stiff when I get up, weak grip, pain in knees, toes, fingers. Think another visit might be in order.

It's good news I know but I was really hoping for answers today sad

ClaireLumia Tue 24-Nov-15 18:36:04

I'm surprised they're saying no further action with the symptoms you have. When I went to see the doctor with similar symptoms he referred me to the rheumatology dept at the hospital.

My bloods also came back negative for RA. The rheumatologist diagnosed inflammatory arthritis. The meds I'm on are working really well and, as long as I don't overdo things, I'm doing OK.

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