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Suspected RA diagnoses, talk to me what life is like with arthritis

(103 Posts)
2fedup Thu 02-May-13 21:14:01

After having issues with my hands and knees for some time and no RA markers in blood tests, they have decided I do, on balance, have RA. It's a bit scary and I've stopped looking at doctor google as that really doesn't help.shock
Off to see the consultant next week and want to know how life goes on. I'm hoping medication will help, but bad flare ups are currently quite a scary thought.

It is arthritis awareness week this week
i've started a thread in chat, if anyone wants to contribute? smile

OHforDUCKScake Sun 06-Oct-13 21:31:12

I get stiffness for about an hour in the morning, and it flipping hurts to touch never mind squeeze.

Although, when the painkillers are working, it doesnt hurt when touched. In fact I just squeezed then and its not painful.

I tried to not take the Naproxen today and I lasted til 2pm before the pain was too bad.

Who knew the reason for joint pain could be so complex hmm.

candycoatedwaterdrops Sun 06-Oct-13 19:55:23

Anti-inflammatories have never really touched my swelling and I think (but couldn't be sure) that they generally don't do much for this type swelling or else rheumatologists would use them instead of stronger drugs. I find celebrex (the only anti-inflammatory I've ever been on) eases my pain a little but nothing else.

There was a campaign called the S factor. The signs of early inflammatory arthritis are the swelling (persistent in joints), stiffness (early morning that lasts more than 30 mins) and squeezing (does it hurt when squeezed).

RA does tend to be bilateral but not always. When they say bilateral, they include the swelling and stiffness as well as the pain. I wouldn't stress too much wrt to being bilaterally affected. I am affected on both sides but my pain is worse on my right side, probably because I'm right handed and use it more.

I have been diagnosed and undiagnosed with RA more times than you can shake a stick at. Sometimes they call it RA, sometimes they say I have an unspecified inflammatory autoimmune disease. I have no rheumatoid factor in my blood but my ESR is always very high and my CRP is usually slightly high. They are treating me as RA in order to get me access to the anti-TNF drugs with more ease. I am fitting the NICE criteria to get the drugs, so I assume it is RA but at this point, I don't care what it's called, I would just like to be able to walk without crutches again!

OHforDUCKScake Sun 06-Oct-13 11:34:22

Ok candy I need more of your opinion. This morning, I decided to stop Naproxen for a few days to see if there did end up with any swelling.

However, I took my hooj Ice Watch off and noticed that there is most definitely more swelling on my left side in comparison to my right.

However, first of all could it have been like that all my life because Ive only looked now!

Second of all, there is no heat.

Third of all, whilst all my joints hurt together, i.e both wrists, both knees, both elbows, my left wrist is a deal more painful and stiff than my right. My right IS painful and stiff but shouldnt they be 'even'? I thought the eveness of the pain was a symptom of RA?

And lastly, does anyone know how to upload a photos from an iphone to MN? Then I can show you the difference in size.

I don't know the exact result of my bloods, will see if I have them around anywhere. But even if my blood didnt show swelling, it is very obvious to look at (think sausage fingers... how attractive )

mandmsmummy Sat 05-Oct-13 22:44:28

Yes you're right x

candycoatedwaterdrops Sat 05-Oct-13 22:34:20

Oh yes, that's true but arthritis of the spine presents differently. Apparently, it is difficult to detect swelling in joints such as; spine and hips but for hands, wrists, elbows, knees etc - swelling in inflammatory arthritis is generally obvious, if not to the patient, definitely a medical professional.

mandmsmummy Sat 05-Oct-13 22:26:55

I don't have swelling or imflammatory in my bloods but I have ankylosing spondylitis (an imflammatory arthritis) x

OHforDUCKScake Sat 05-Oct-13 22:20:57

Oh I see. I didnt know that. It hurts to touch my wrist, but I cant see any swelling, I dont think.

My thyroid is fine. Dont know about vitamin D.

I suppose I will just have to keep taking painkillers then and never knowing what it is. This thought is a pretty awful one though. It makes me feel quite sick having to just deal with all the pain and tiredness and not know what it is thats effecting my life so much.

candycoatedwaterdrops Sat 05-Oct-13 22:11:10

In my completely unprofessional opinion, it's very unlikely to be an inflammatory type of arthritis given you have no/little swelling and no inflammation showing up in your blood. Have you been tested for vitamin D and thyroid?

OHforDUCKScake Sat 05-Oct-13 21:53:54

I also got a searing pain at the bottom of my hand/top of my wrist a few weeks back, ran it under the tap as the pain was that bad and within 30 minutes a huge long black bruise appeared and stayed there for about 2 weeks.
I forgot to tell my doctor this, I have a picture will show him monday but I have no idea if this is related.

OHforDUCKScake Sat 05-Oct-13 21:52:22

I dont think Ive had swelling no.

My wrists joints are very very painful, radiating at the outer joint where the knobbly bit is, and my knuckles are very painful and stiff in the morning. The bottom of my thumb joint causes me awful burming pain.

I have pain in the elbows, knees and when its all very bad, in my shoulders.

My joints crack during a flare up, but not im between when Im fine.

I have typical symtoms of carpel tunnel and have done for about 6 years and regularly wake up with hands blown up to 3 times the size (think blown up marigold!) and pins and needles.

Im slim and not over weight so I cant blame that, as I know weight can effect joints.

Ive also been getting horrendous fatigue, this is the first night in a week Ive been up past 8.30pm.

mandmsmummy Sat 05-Oct-13 21:28:14

Not as far as I know duck! But they are having that effect on me. X

candycoatedwaterdrops Sat 05-Oct-13 21:26:21

Do you have joint swelling, Duck? What are your symptoms, if you don't mind me asking?

OHforDUCKScake Sat 05-Oct-13 21:13:58

No I have no side effects from either, thankfully. Do you have asthma? I know ibruprofen can be a trigger.

mandmsmummy Sat 05-Oct-13 20:52:42

Anyone had side effects like breathlessness from naproxen, ibuprofen? X

OHforDUCKScake Sat 05-Oct-13 20:47:40

Thats been mentioned to me a couple of times actuall so I looked at e symptoms and no thats definitely not me at all. I couldnt identify with any of the symtoms.

My mum has polymyalgia (which isnt as bad as fybromyalgia) and her symptoms dont match mine at all either.

candycoatedwaterdrops Fri 04-Oct-13 16:50:53

I meant to say this morning but was in a rush....

Duck - have you looked into fibromyalgia? That can cause the symptoms you describe.

candycoatedwaterdrops Fri 04-Oct-13 08:24:16

Beyond Did/do you have normal CRP and ESR?

LostInWales Fri 04-Oct-13 07:52:32

There is nothing trivial about pain of any sort. I don't think people are educated enough about how to use painkillers which is such a shame because they are really helpful!

mineofuselessinformation Thu 03-Oct-13 22:05:53

Oh and I do know about omeprazole and the like - dd had to take it when on a high does of steroids.

mineofuselessinformation Thu 03-Oct-13 22:04:42

Thanks Lost. Sorry if I've trivialised what you or anyone is going through. (I know things could be SO much worse for me than they are.)
I will start tonight and stop being so lazy about it. smile

LostInWales Thu 03-Oct-13 21:57:17

AS someone who has more than she really wants experience of managing pain, paracetamol and the like are much more effective if you keep the dose up over a period of time not just when you start to have pain. If you have a happy liver etc etc I would start now, taking the appropriate max dose for the day over the correct intervals. This should help a lot. Also tag teaming with an anti-inflammatory (see 'Losty's short lecture on NASID's and stomach health' wink ) So if you can take paracetamol 4 times a day and ibuprofen 3 times per day (check it's a while since I've taken either) try and make it so you can spread each of the type of pills out so you never come to the end of both at the same time IYSWIM. Then get the children to bed and take the codeine and get a heat pack on your hip when you get home!

mineofuselessinformation Thu 03-Oct-13 21:30:27

Hello again.... Just coming back to ask a question.
My hip has been painful recently, escalating to screaming pitch when I drive for more than 30 mins. I need to do a 1 1/2 hr drive on Saturday (and back again - I'm dreading it) so wondered what the best combination of painkillers and anti-inflammatories is? I have paracetamol, ibuprofen, diclofenac and codeine. I know I can't take the ibuprofen and diclofenac together--and don't want to be off my face when driving--. Should I start taking the max dose of paracetamol the day before (a gp told me that I should really try to keep a level in my system) but usually try not to take anything unless I really need to.
Probably a slightly dim question blush but thought someone could give some advice.

Ducks, PsA has none of the markers for RA, if that possibly helps?

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