Worried i may have RA. Pain in knuckles (especially i... - NRAS

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Worried i may have RA. Pain in knuckles (especially in morning) and kind of burning sensation all over body.

agreen24 profile image
33 Replies

I have been waking up the last week with tension in my hands mostly knuckles, kind of feels like o have been knocking on a door too hard which has left bruising. Last night it was enough to make me google and it appears that i may be experiencing early RA symptoms. Today i felt really tired and the bruising tension sensation in my knuckles has remained with me all day (wheras before it would subside after a few hours in the morning). Im going to try get to the docs tomorrow, but what can i expect timewise before i am diagnosed? I live in Northern Ireland, 40 yrs of age and am fit and otherwise healthy.

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agreen24 profile image
agreen24
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33 Replies
agreen24 profile image
agreen24

Thank you v.much. I cant believe it takes this long. I was reading about early intervention being so important (within the first few months) in the chances of remission. I hope i get an early diagnosis, whatever it may be!

Amy_Lee profile image
Amy_Lee

Dear agreen24 ,

RA comes bilaterally on both side of our body. Just to make sure you take as much rest as possible while waiting to see your doctor. Try to do some simple exercise to maintain your joints mobility everyday.

Try to go through the 2 very good and informative videos below for better understanding about RA. I have got most of my answers about RA from the videos.

healthunlocked.com/ra-warri...

If unfortunately you do have RA, be braved to fight the disease positively. Get early treatment, the golden period to put you back to remission and minimize the joints damaged will be getting treatment within the first 6 months of the RA onset. Do not skip your medication though you may read that the medication may have a lot of side effects. Work closely and trust your rheumy, he or she will check if there is any side effect developed. Get started with some low impact exercises daily to keep your joints mobile, it will be painful but you have to do it to avoid stiffness. Work on your body to the level of pain your can tolerate.

Below is the link of the exercises that I did in the very early stage of my RA recovery journey and I hope it will give you some idea what kind of exercise to get on with at this very painful stage.

healthunlocked.com/ra-warri...

Take good care and I always feel free to share your problem if needed.

agreen24 profile image
agreen24 in reply to Amy_Lee

Thanks for all the helpful info. I will let you know the result of docs appt

janmary profile image
janmary in reply to Amy_Lee

Hi, just a little correction - contrary to some medical info, Rheumatoid does n't always affect joints symmetrically. I have sero-positive RA, but can have flares happening in any joint, but rarely ( I'd say never, but I don't want to tempt fate) symmetrically

Amy_Lee profile image
Amy_Lee in reply to janmary

Dear Janmary,

According to my rheumy, before treatment, it does happen symmetrically. However, after treatment, if it flares, it could be any joint but not often as you mentioned. I am not very sure of this part really. However, as long as there is anything wrong, we should just go back to check with our rheumy to ensure we are in good care.

janmary profile image
janmary in reply to Amy_Lee

Hi Amy-Lee

thanks for your reply.My joints have never been affected symmetrically. I got a very quick diagnosis when I got to a rheumatologist, but had been reluctant to accept the referral just because I knew I didn't fit the 'classical' picture. I wouldn't like others to fall into the same trap.

I think that as more research is finally done the diagnostic criteria are getting blurred - confusing at the moment, but hopefully going somewhere positive.

nomoreheels profile image
nomoreheels in reply to Amy_Lee

"RA is a symmetrical arthritis, meaning that it usually affects both sides of the body in a similar pattern, although this is not always the case." This is taken from the NRAS website nras.org.uk/what-is-ra-article

I've read the same elsewhere (UK, Europe & the US) so maybe not as unusual as thought? Possibly your Rheumy thinks otherwise Amy-Lee, it does seem he's in the minority though, or maybe it's that it's only considered to be symmetrical in Malaysia.

Amy_Lee profile image
Amy_Lee in reply to Amy_Lee

nomoreheels , once one of my ankle was in pain, that was few months after the treatment, but the other part of my joints were not as painful during my recovery process. When I visited my rheumy, I told her the difference that I felt. She told me that after treatment, flare up could happen in any joint, it might not be symmetrical though it was not often. She advised me to walk in to see her as long as I felt something not right in just any part of my body.

May be I will raise the question again when I go for my appointment in Jan 2017. The more we know, the better we are in control of our own body.

nomoreheels profile image
nomoreheels in reply to Amy_Lee

I think we much as anything Amy the disease is still an enigma to a degree & those who understand it more than us are still learning. You've experienced a flare of a single & so non symmetrical joint & have a confirmed diagnosis so know it's something that can happen, there's no better proof than that. I think this is why the current information tells us that symptoms are usually symmetrical but not always.

Leonwp profile image
Leonwp

Hi, i really hope you are not about to join us and personally i hope that you go away and that we never hear from you again. But....that is probably what you are hoping as well. If your gp takes your diagnosis further you may be able to make enquiries with your local health service and get some indication of how long your wait could be. You didnt indicate gender but something said male to me, i only asked because in general you have higher risk as a female however early symptoms can be more noticable in certain more male based trades for example butchers etc, (yes of course i know there are female butchers before im shouted at but statistically??), you didnt mention employment status either. If you have any access to private health care, through a union or other source it may be worth considering using that facility at early stage if indicators lead to you being referred. The majority of people respond well to early treatment but that early treatment is vital. One other thing for you to consider is that RA is often although by no means always triggered by a viral reaction, in my case it was a sudden serious chest infection, i had some indicators similar to yours around 8 months earlier but after what i now know was a flare up the symptoms disappeared except that i was unusually exhausted, then the chest infection happened and my consultant (later) indicated that my immune system probably hypered and then started attacking my joints with a vengeance.

Please let us know how you get on and im sure we all hope for you this is a false alarm.

agreen24 profile image
agreen24 in reply to Leonwp

Hi Leon, i am male and work at a computer. I am fairly fit and i think that i have been feeling this gradually over the course of a few months as i remember thinking that i must have been stressing my joints as i was slending some time in the gym. Its like it was dormont and waiting for something and then last few days it became really noticeable in knuckles and now last night could feel it in my elbows. Thanks for the info!

Leonwp profile image
Leonwp

Well i thought you wrote like a man, (blimey i bet i get hung out to dry for that comment!). Could be Repetative Strain Injury you know or Carpel Tunnel Syndrome, both can radiate extensively and treated much the same as early RA awaiting diagnosis with anti inflamatories, pain relief etc. The major differences being that reduced use improves RSI and CTS but not RA as use and wear are not the cause, and the flu like aches and exhaustion come with RA.

agreen24 profile image
agreen24 in reply to Leonwp

maybe us men arent as elequent ;) i hope i dont have RA. Its amazing how much you dont know about things like this until it hits close to home. Thanks again for the info its a great help

helixhelix profile image
helixhelix

Everything really depends on your local services, both GP and specialist services. Many GPs know very little about RA, or other inflammatory diseases like it and take a lot of convincing even to start doing blood tests. On the other hand some places are really on the ball and have a fast track appointment system for people showing symptoms of early arthritis, so much faster than 18 weeks to get to see a rheumy.

But all the written information about it being so important to be treated early can be a bit misleading as so much depends on what type of inflammatory arthritis you have (if you even have one of them of course!). It was probably over year from first niggling symptoms to treatment for me, partly because I didn't go to a doctor until it suddenly went wild. But I responded well to treatment and have minimal permanent damage, and generally am in remission now most of the time.

However, in the meantime treat your body kindly - good food, proper rest and do keep up whatever exercise you do if you can.

agreen24 profile image
agreen24 in reply to helixhelix

thanks. I have read a lot about people being in remession, but what does it actually mean? no symptoms at all, no need for meds?

helixhelix profile image
helixhelix in reply to agreen24

I'm in a medically controlled remission which is the most common. So still take the drugs but am otherwise symptom free most of the time. I have tried several times to come off drugs completely but that doesn't work for me despite big efforts with diet and so on.

I have to be a bit careful, and can & do have flares from time to time, but they are usually fairly minor. So I'm quite happy to keep taking the drugs...

Amy_Lee profile image
Amy_Lee in reply to agreen24

I am also in remission after 1 1/2 years treatment. I was diagnosed in Jun 2014 and started the treatment in Jul the same year. Basically I am pain free though I still can feel the difference in my joints. I cannot tell exactly but they are not exactly like how I felt before I was sick.

I am still under the medication but my rheumy already reduced my methotrexate intake from 20 mg to 15 mg and now 12.5 mg. I hope one day I can be off med.

Thegreywitch profile image
Thegreywitch

RA is not always bilaterally, I have had ra for many years and the pain and swelling ( or just pain) in me personaly is almost never symmetric.

Although I get pain in both hands one is usually functional and one not, its very usual to just have one body part effected.

janmary profile image
janmary in reply to Thegreywitch

Me too, have retro positive RD, but never have flares in symmetrical joints.

Thegreywitch profile image
Thegreywitch in reply to janmary

Janmary thank you for stating your RA is not always symmetrical. I think sometimes people think they have not got RA as the pain and/or swelling does not follow the classic guidlines .

I would hate someone to suffer if their symtoms were the same as mine.

DelicateInput profile image
DelicateInput

Hi, It is very important to get an early diagnosis and thus treatment, from the start of pronounced symptoms. Are both hands affected? They usually are in RA. My right hand was badly affected overnight - I could not use it and thought I had either been bitten in the night or had an allergy. When the other hand went a fortnight later, it was obvious it was some form of inflammatory arthritis. My shoulder came on over a few weeks but was severely paralysed/frozen. The pain was sudden and severe but it was the disability that really troubled me.

It took six months to get an NHS appt by which time, of course, it was too late. The drugs worked well on my shoulder despite the delay but my hands have joint damage because of the delay and conventional drugs have not helped at all - just given me side effects.

I would think twice about going private. I did and was diagnosed very casually with gout and really messed around, and because of it the GP delayed my NHS appt even longer. I would not recommend it for arthritis.

Thus, anything that comes on severely and suddenly needs early treatment to avoid joint damage. Make sure that the referral letter to the hospital stipulates the date of onset of severe symptoms. Mine said that I had longstanding vague aches and pains all over my body when, in fact, I had a sudden severe onset of disability in both hands and my also my shoulder. This meant that I was kept waiting with a disastrous consequence.

I had the burning sensation going up my arms. It sounds like nerve damage but it is caused by RA.

agreen24 profile image
agreen24 in reply to DelicateInput

thanks for the advice. touch wood my symptoms dont seem to be as bad as yours were but i will definately be checking the details that get sent to the hospital. i went to docs today and got bloods done. The doc looked at my hands and said they can never be certain its one thing or another just by looking but she said possible inflammatory arthritis and results will be back next week.

DelicateInput profile image
DelicateInput in reply to agreen24

The point is that she should not be waiting for the blood test results if she suspects inflammatory arthritis. It says this on the NHS website: referral should not be delayed for blood tests or their results where RA is suspected.

What happens if the results are negative, as mine were? What is she waiting for? It takes a long time to get an NHS appt and the weeks add up. You cannot be certain just by looking - as several doctors including a consultant rheumatologist, a physio and an osteopath could not tell and made different guesses. You need to get ultra sound scans of your hands done. You can certainly tell from those and they are cheap. The hospital usually does them but the GP can easily arrange them. Blood test results are often negative early on and most people do not get positive results for about a year by which time it is far too late.

agreen24 profile image
agreen24 in reply to DelicateInput

now youve got me worried. i will call the docs tomorrow and ask for a referal straight away. i have private health care so i wonder do they need a referall or could i just call them and ask for appt with rheumatologist?

DelicateInput profile image
DelicateInput in reply to agreen24

It is best to get a referral letter. It should explain the situation concisely using medical terms. Otherwise, you have to give a long-winded explanation yourself, which is time consuming and runs up a bill. You only normally get two consultations paid for by an insurance company. Insist on getting the imaging done, ie ultrasound. I found ultrasound better than an MRI. It is far more comfortable and you can get both hands done and other body parts - but it depends on what the rheumatologist wants.

Insurance companies normally won't pay if you have not been referred by your GP anyway.

Amy_Lee profile image
Amy_Lee in reply to agreen24

What DelicateInput said is very true, my blood test showed negative too. But my attack was very sudden and aggressive. My rheumy said though I had a negative blood test result but I had all the RA symptoms all over my body hence she treated me immediately.

I notice that many people missed the golden period of treatment because their onset of the attack is slow and not obvious hence a lot of them end up with some kind of joints damaged. Therefore, my advice is to request to see a rheumy immediately if you can.

RA is a long term battle, you need to check if your insurance will cover all your medical treatment? Over here, I too have a medical card, but my insurance company said that the medical card does not cover anything related to RA but would only pay for the accommodation if I were admitted.

agreen24 profile image
agreen24 in reply to Amy_Lee

so i got to see a rheumatologist today. She didnt seem to think it was RA as i dont have any noticeable swelling and said that it looks to be very mild if it is. i had to convince her to do an ultrasound and xray but that did not show any signs of damage. im still waiting on the bloods coming back but i walked away thinking im probably being a bit of a hypochondriac. I felt better today bit still feel bruising in knuckles and tension in hands although less so than at weekend. Could it just be something virus related? the guy who did the ultrasound said it could be rsi from using the computer(im 8 hrs a day at a computer so plausible)...

Amy_Lee profile image
Amy_Lee in reply to agreen24

I was badly hit by RA onset. My blood test results were negative, my X-Ray and ultra sound had no signed of damage. Since physically almost all my joints were swollen, warm, painful and tender, my rheumy said that I was indeed having RA. She gave me 2 steroid injections immediately and started me with treatment since.

1 1/2 year later, she declared that I was in remission. It was in Aug 2016. In fact I was pain free since early of the year but my rheumy said that I needed to have the consistent condition before she could say that I was in remission.

Since a few of them did experience non-symmetrical symptom, then we need to be very careful to our own body and to highlight the pain to our rheumy if it does happen to avoid any damage.

agreen24 profile image
agreen24 in reply to Amy_Lee

my hands appear normal but very slight redness on the corner of pip joints that feel bruised. even of early stage pics ive seen my pips dont look like that but feel like they should look that way (if that makes sense). i have been taking a lot of curcumin for something else and im wondering if that has prevented my hands from swelling up as it is a well known anti-inflamatory. I guess i want to be totally confident that i dont have RA but im still not convinced yet.

Amy_Lee profile image
Amy_Lee in reply to agreen24

agreen24 , go for the appointment to see your rheumy. Tell him or her what you eat and how you feel. Keep a record of your problem and show your rheumy when you see him or her. I find 3 very important records you must keep so that you are in control of the situation: -

1. Blood test records - you can see your performance hence can ask your rheumy when any indicator goes out of range.

2. How you feel each day - write down the pain and swell that you have on any part of the body, bring along to talk to your rheumy.

3. Food that you eat - any food that cause more pain to you the next day. Write them down and experiment it yourself. Only you know your body best, no one food fit all. Some may be okay with dairy but some may not. Though I stopped dairy during the on set of my RA, now that I am in remission, I take them occasionally. In fact, my rheumy encourage me to take more dairy because I need calcium to keep my bone healthy especially when RA and the DMARDS will weaken my bone.

agreen24 profile image
agreen24 in reply to Amy_Lee

Hi AmyLee. I did goto see the rheumy but she didnt seem to think it was anything that needed immediate attention. the ultrasound and xray didnt show anything but even now as im typing i know im not feeling right, my hands feel weak and fingers feel tight, while my elbow feels like ive overextended it. im also getting lots of cracks and pops in joints that i have not noticed before (but maybe im just noticing every little thing now). Does early RA always show inflammation or acute pain?

Amy_Lee profile image
Amy_Lee in reply to agreen24

I suggest you get a second opinion to avoid any problem. I am very sorry to have you here in the group really. I would rather you do not have RA.

agreen24 profile image
agreen24

so got blood results back and they are showing negative for ra my rheumatologist said. She said that because there is little inflamation that she would treat it gently for now with anti-inflammatories unless it gets worse and then she would think about steroids/dmards. I asked her if inflammation=damage and she said yes so the fact that i dont have inflammation and only feel slight burning aches and tension etc means that there is no damage being done. Is this true?

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