Stiff hands in the morning?: Hi I am still trying to... - NRAS

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Stiff hands in the morning?

RJFS
RJFS
102 Replies

Hi I am still trying to work out if I have Ra or not, I have seen a rheumatologist who thinks I probably have though - based on one incidence of swelling in hands 18 months ago and continued paining hands and feet. As I've mentioned in previous posts though bloods come back normal etc.

I just wondered if anyone would end describing the stiffness in the mornings, I ache in the morning, my feet are painful for about 10 mins and then on and off all day - my hands feel 'fizzy' and painful in the mornings and stiff, though I have no trouble moving them or making a fist - its just that it host to do so and I kind of click a lot. I've read that people are so stiff they can make a fist or even get out of bed and I don't have that - with no further swelling since the one episode I am cautious about starting meds in case I don't actually have RA - no idea what else it could be though as have had carpal tunnel ruled out by GP...

Thanks in advance.

RJF

102 Replies
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Simba1992

Synovitis is the best indication of RA together with symptoms and most often a possitive CCP, blood result less dependable. Synovitis can be best detected by MRI or US exam. So I have understood.

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Shalf
Shalf
in reply to Simba1992

Definitely with an MRI

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helixhelix

Personally I prefer U/S every time as there's no radiation. These days I try to avoid MRI and CT scans unless really necessary.

A good rheumy can also feel boggy joints in hands, which is even better.

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Crazyxxx
Crazyxxx
in reply to helixhelix

I prefer US as well but mri scan has no radiation and shows by miles the most. So if the US isn't indicative then mri might help

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helixhelix
helixhelix
in reply to Crazyxxx

Yes true! I was muddling my CT & PET scans! MRI costs so much tho' that I don't like to take up appts if I don't have to.

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Simba1992

But MRI as far as I know does not have radiation(?) Never take it with contrast liquid.CT is really bad.

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Crazyxxx
Crazyxxx
in reply to Simba1992

Correct. X-ray, CT and PET scan use radiation and mri uses magnets. Mri is brilliant for soft tissue damage but as helixhelix has stated it's quite expensive. So if the US shows enough the NHS prefers to save some money

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Cheylann
Cheylann
in reply to helixhelix

MRI has no radiation so 100% safe.

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poemsgalore1

What about Osteoarthritis?

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RJFS
RJFS
in reply to poemsgalore1

yes possibly, I just don't know, the rheumatologist seemed convinced it was RA but I wonder if when I said my hands and feet were stiff, I gave the wrong impression. They are stiff but I can move them, they just hurt.

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Simba1992
Simba1992
in reply to RJFS

OA does not have synovitis. The MRI or US will make you wiser. Personally do not see any point in starting toxic meds before sure of synovitis.

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helixhelix

Not so, you do get synovial inflammation with OA.

ncbi.nlm.nih.gov/pmc/articl...

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Simba1992

Oups, got me there, but the histological and other features are different. Bone changes are different in the two and this can be detected with MRI.

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helixhelix

It's not a competition!🙂

Sadly so much depends on the skill of the person interpreting the exams...I feel so lucky to have a rheumy who has U/S in her office and doesn't hestitate to check my joints with it, as she knows exactly what she's looking for.

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Simba1992

In a recent discussion among rheumies this was in fact brought up as something for the future, that the US equipment should be in the doctors office for immidiate feedback. 😊

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thelmar
thelmar
in reply to helixhelix

Mine too. Done on the spot. No waiting for yet another appointment.

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Mmrr
Mmrr
in reply to thelmar

It all sounds ideal, so far removed from my experience.

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Shalf
Shalf
in reply to helixhelix

My Rheumy has US in her office too but it recently didn't show up inflammation - MRI did.

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RJFS

I suppose my question is what do other people experience in terms of stiffness, is it actually impossible to move your joints, or just painful? Thanks for all the replies.

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Crazyxxx
Crazyxxx
in reply to RJFS

I certainly have stiffness in the morning but I can move my hands. I always say it feels as if someone has put glue inside my joints. I have to push through resistance to move my fingers and the more I do that the easier it gets if that makes sense

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RJFS
RJFS
in reply to Crazyxxx

Yes, thank you it does. and sounds familiar to me. I read some of the personal stories, people saying they are too stiff to get out of bed, or make a fist, or that their hands literally get 'stuck' and I don't have that, glue-ey is a good description, and my elbows have been sore this week. I had a steroid injection which made no difference to be honest to my hands though my feet felt better. Thanks fro replying. R

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Crazyxxx
Crazyxxx
in reply to RJFS

To be honest I've never been that stiff that I couldn't get out of bed. I've been slow and achy but not to that degree

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wishbone
wishbone
in reply to RJFS

I think most of the stiffness in my case is due to varying degrees of joint erosion, but it does puzzle me a bit as right now, no matter how hard I try, I just can't raise my arms above the horizontal. They are painful when I attempt to but that's not what is stopping me, it's just physically impossible to do so..it feels as if a heavy weight is holding them down. While a couple of weeks ago when my RA was better controlled, I could raise them a bit above the horizontal and it was less painful doing so. Some of my fingers have joint damage and though not that painful, a couple have practically ceased up in a claw like fashion. My two big toes have become dislocated and are fully locked inward, but surprisingly perhaps are not particularly painful. Of course if I decide to kick some hard object such as a solid wall, which I have done on more than one occasion without footwear I may add, then my toes do hurt a little....OUCH!!! :-O ;-)

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RJFS
RJFS
in reply to wishbone

Goodness that sounds very painful - I hope you can get some meds that help with lifting your arms soon. R

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wishbone
wishbone
in reply to RJFS

Thanks.

If things deteriorate much more then it will be time to phone my rheumy.

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poemsgalore1

I have RA and OA. It's not impossible to move my joints, but it is difficult and painful.

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RJFS

Thank you, that's helpful.

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helixhelix

For me "fizzy" is a good description for my morning hands and feet. And slow and clumsy.

If you have only had one episode of swelling, you are perhaps in a good position to try to stop the RA (if it is that) from getting out of control by making lifestyle changes. And even if you don't have RA they can only be good for you!

You need to be motivated, as not easy. But it is more likely to be successful for people with early RA. So a) stop smoking if you do b) get your weight into normal levels if it isn't c) look at reducing stress in your life d) take daily exercise and e) smarten up your diet.

Then talk to the rheumy about holding off starting drugs. Many are quite happy to wait if they don't feel the need is urgent. But do beware that RA can rumble along slowly for years and then suddenly explode in the space of weeks. So even if the rheumy agrees you don't need to start drugs don't let them discharge you back to GP, but ask to be reviewed again in 6/9/12 months time.

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RJFS
RJFS
in reply to helixhelix

Thanks thats great advice and feels like the right way to go for me. The the rheumy wanted to start me on meds right away but I will try a wait and watch if I can, until I'm sure. I don;t smoke and am a normal weight, but more exercise ( I walk every day but not much else) and my diet (I'm addicted to salt!) I can work on :) Thanks.

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Cheylann
Cheylann
in reply to RJFS

I was prescribed methotrexate a year ago for similar symptoms to yours. No inflammation showed on ultra sound scan and bloods were normal however I had constant pain and stiffness. After many visits to rheu my and finally an MRI scan which showed only slight inflammation and bone erosion they sent me to podiatrist who has decided my entire problem is mechanical. My point is unless u r sure don't take those harsh drugs. I am so pleased I never did. It didn't sit right with me them prescribing it when they were not sure of exactly what the problem was.

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helixhelix
helixhelix
in reply to Cheylann

Do you know what caused the erosion? And has it stopped developing?

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Cheylann
Cheylann
in reply to helixhelix

No they haven't said. I don't think they know. I'm seeing podiatrist again this morning and am going to ask again. He said it could be an injury. Naturally I am worried that they are missing something as now my elbows are painful. Not stiff just feels like tennis elbow. All I would like is to rule out RA or PSA . RheU my said it would appear there is some inflammation near plant fascia and bone spurs but not enough to warrant a RA diagnosis. She gave me a cortisone shot which took all the stiffness from my ankles away but still have bone pain in heels and side of my feet. She said if sore joints and stiffness return I would then have to start methotrexate injections which have been in my draw for past year. Ridiculous.

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RJFS
RJFS
in reply to Cheylann

Thanks Cheylann, yes it is a big decision to start - thanks for replying. R

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Simba1992
Simba1992
in reply to Cheylann

Now here what I have read at least that in OA you have the symptoms but synovitis is not seen in MrI or US but this does NOT exclude OA but but does NOT give evidence for RA. As long as this is the situation I would not start with any toxic meds, eather. This would be over medicating. Read recently about a discussion among rheumies at a seminar. As a crucial indication synovitis was named.

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Mmrr
Mmrr
in reply to RJFS

Some great advice from helixhelix. But I would emphasise that RD can explode in a very short space of time, so be very careful if you decide not to take medication now. I would seek assurance that you would be seen immediately by the rheumatologist if you become unwell and not kept hanging around for months, which is the norm.

Looking back over the 27 months since being unwell myself, my RD has been of the exploding type and my treatment 'sub optimal' (consultants phrase). I now have thumb joint destruction and other hand and feet issues which developed within months of just being stiff and achy. All my joints are now involved including my elbows, shoulders, knees and hips due to not being offered appropriate medication at the time, which could have halted disease progress. I had no blood markers, although felt unwell - stiff, achy joints that fizzed and felt ill, feverish and fluish like all the time. Brain fog was so bad, just so bad.

In my case I knew that I had a rapidly progressing RD , but struggled to get good care. if you have a good rheumatologist offering preventative care I would take it. Meds can always be reduced once the disease is under control.

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RJFS
RJFS
in reply to Mmrr

Thanks Marr - can I ask about the stiffness, was it like a joint locking stiffness, or just painful and 'glu-ey'? R

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Mmrr
Mmrr
in reply to RJFS

More gluey in my hands and feet, slow movements, lots of cramping often feel I need to stretch the joints out.

I have a reduced pinch and cannot fully curl my fingers into my palm, probably due to tenosynovitis.

I also have OA so have a cross over, crunchy OA.

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bora62
bora62
in reply to Mmrr

This sounds just like me, taken years of these symptoms to decide I have Poss RA , feet stiff as in morning, hands been swelling off and on for years.. pains all over general unwell feeling constantly...Still no definate diagnoses , passed round hospital for test after test lol.

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Mmrr
Mmrr
in reply to bora62

Everything is obvious with hindsight and my situation is complex, but it so obvious now that I have and have had RD for years. Now all confirmed by MRI and recent blood changes.

I've known for well over a year I have an aggressive RD, trying to persuade the medics is another story. Keep pushing for a diagnosis, medics can be an intimidating bunch, keep going until you get the care you need.

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RJFS
RJFS
in reply to Mmrr

My rheumy seems convinced I do have it but I think it might be because I said my hands and feet are stiff in the morning - but stiff is not really the right word, I can move them, they just feel claggy. strangely today they feel much better ???

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Mmrr
Mmrr
in reply to RJFS

Feeling good one day and worse the next is symptomatic of RD. I'm under medicated just now, waiting to begin biologics.

Yesterday morning I was so stiff and achy I could hardly move, by evening I was walking much better. Today I'm hot and bothered and have sharp pains. That's often the way it is.

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Simba1992
Simba1992
in reply to Mmrr

Hello Mmrr,

As you know I have been following your " case" for a long time. Thank you for this possibility. It's always very educational to follow longterm someones journey.🤓😊I do have some question marks concerning your medication and the course of your illness and what we can eventually learn from this and would be very thankful for your comments.

Your illness had been bruing for some time before actual break of RA(?). This is the case with so many.When you were diagnosed you were in fact quite early put on MTX, which evidently did not work, which is the case in a significant %age of RA cases. The UK rules say you need to try the med at least for 6months. Since the effect of the med should be seen after three month, it seems like another three months did not make the situation better. After 6months a proper evaluation of the situation was evidently not done(?) So you kept on hanging there with suboptimal medication. You fought your case and pushed for more effective meds after 27months and succeeded after proof of synovitis as well as erosion with MRI exam.This was shown in hands and ankles(?)

The aggressiveness of RA.

RA is diagnosed as aggressive usually when you have clear inflammation markers in your blood ( not very dependable) If you have a possitive CCP ( don't remember were yours possitive?), presens of nodules positive ANA and synovitis. Aggressive RA without treatment can cause deformaties and usually during the first two years. This is the case in 10% of RA cases. In your case, inspite of MTX not working the illness did not proceed very aggressively(?) If the synovitis had not spread more extensively and the erosion had not caused permanent damage(?) or defomaties.

Can we say that yours is an example of aggressive RA? Or is this infact very often the normal order of things? Where there is in fact time to get a proper diagnosis before hard medication?

Can we push the use of biologics when the effect of meds is in fact suboptimal by insisting on a mri exam to detect ongoig synovitis? I believe the reluctance to do this may be the additional cost. Not only of the exam but of the ultimately following upgrading of meds.(?)

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Mmrr
Mmrr
in reply to Simba1992

Simba, thanks for all your input over the months. you have raised lots of interesting pointers.

I'm not sure what your question is 😁 ?

In total I've been on MTX for 11 months, it has most definitely helped both my joints/ aches/ stiffness and the brainfog. Oh my goodness has it helped the brain fog. It has been transformational. ( so did sulphasalazine before the salicylic acid allergy became a problem).

The issue eith MTX is the side effects which I've had since the first dose, namely mucositis and mouth ulcers, more recently the increasing gut problems (around 6 months). In my humble opinion I've not been properly assessed until recently. The focus being on chondrocalcinosis and OA, with inflammitory arthritis as an afterthought.

My hands have deteriorated much in the past 12 months, the plastic surgeon repeatedly saying the deterioration was rapid and aggressive. He raised the issue of biologics when I was refused guided steroid injections by the radiologist into my wrist joints one year ago next month, due to every joint in both hands showing inflammation on ultrasound (no point doing wrists !)

Still my previous rheumatologist insisted that my hands were not her problem. She retired and I've been fighting since last April for better treatment. MTX helped my hands a lot , until the side effects resulted in lowered dosage, they are on a downward slope again.

Blood markers or not, the deterioration has been rapid, hence aggressive to me 🤔

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Mmrr
Mmrr
in reply to Mmrr

Sorry I should have said, I only ever managed to reach 15mgs of sub cut MTX for 4 weeks due to gut issues of abdo pain, visiting the loo up to 9 times a day at it's worst, increasing lower gut pain, passing undigested food. I was unable to leave the house for several days each week. That was July 2018, I was taking 30 mgs of aily prednisolone then too.

I've been on a reducing dose of MTX since then and am now on 7.5 weekly, still had some awful gut issues last week and the roof of my mouth feels as if it is permanently scalded, with a permenant red shiny appearance.

So not good in my book to put anyone through this for so long. We as RD people deserve better.

All my RD symptoms are increasing, I'm sleeping during the day again due to overwhelming tiredness (just awake again), the fatigue is crippling some days and my body aches, my joints are hot and stiff. My hands are hot, right thumb unstable, left burnt out and my feet go between ache, acute pain , stiffness and being not too bad at times.

Groin stiffness stops me walking any more than a few steps some days, then whoosh it improves the next day, no reason.

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Simba1992
Simba1992
in reply to Mmrr

Yes it does look as though. you are in an acute situation where I do the biologic will make adifference. Evidently MTX did help to a degree but not enough and the side effects have become quite unbearable. What I always find myself wondering though is what effect Mtx infact has on the underlying disease process. Yes it does take away symptoms and slows down progress at best but when it is stopped because of inefficiency or toxity what is the illness situation? So often hear how people in this situation feel very sick. The fact also being that Mtx effects our whole body and its life functions that are already in trouble. I have only myself to compare with but with time, since my diagnosis of agressive RA 2015 my symptoms have decreased not increased. From having all the pain and difomfort so often discribed here the whole situation has calmed down. My treatment plan having been always targeted on supporting my body in different ways and using meds very conservatively. But this is me and personally I have not regretted my choice. My brain fog and other symptoms did not need Mtx to disappear. Hope you feel better soon. Simba

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Mmrr
Mmrr
in reply to Simba1992

I've asked repeatedly about the long term effects of MTX, a particular concern being the persistent mucositis and gut problems, what long term effects are these having ? no one knows, I get a blank from the medics. I have my own views, based on past nursing experience and my reading, hence I increasingky deal with my own dosages of MTX according to my symptoms to keep me going for now.

My life just stops without DMARDs, I seem to have the most awful systemic and cognitive issues from heating up. The physical stuff although very debilitating I can cope with. (I'm under the care of an excellent neurologist, who researches into extreme brain fog, I've said before he says my situation isn't unknown , but under reported. I'm meant to be taking part in research, but am not well enough to do so for now). I've tried diet changes, I've giggled with exercise and mobility, nothing works other than DMARDs and steroids.

So I either stay at home feeling so ill, or I accept the (largely unknown) risks of meds. I've chosen to go with meds as I might get a good result and some reasonably good years of life. The alternative isn't worth having for me.

I was the fittest and most content I've been in my life immediately before becoming Ill, BMI 22, lean, athletic, good diet aged 57, good relationships, good work/lifebalance in a job I enjoyed. Yet, wallop RD raised its head.

I know you take LDN , do you take anything else ?

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Simba1992
Simba1992
in reply to Mmrr

So sad isn't, my situation was so simmilar to yours before the breakout. I do hope you get relief soon, it's really impossible to think about anything when feeling as rotten as you do at the moment. Take care. Simba

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Simba1992
Simba1992
in reply to Mmrr

I take LDN and have a diet that maximizes cell respiration and production of energy. I watch out for food stuff effecting estrogen levels as well as seratonin. I supplement with adequate vits and minerals as well as progesterone. I still take 5mg of pred.working to get off this. Took a 2m course of doxycykline ( low dose 50 mg) Made an enormous difference. Stopped in order to start my sun bathing treatment, which is very important, have noticed.

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wishbone
wishbone
in reply to Simba1992

Hi Simba, sorry to butt in, but just a couple of quick questions if you don't mind...Is synovitis always present in someone who has tested positive for both CCP and RF and has aggressive RA? Also, is it solely synovitis that causes joint erosion and deformity or are there other types of inflammation involved?

One more thing, I have an aggressive form of RA with some debilitating joint damage mainly to feet and hands. I've had RA for 16 years and think the last time I had an x-ray was 7 years ago when my feet weren't too bad, and I can't recall ever having a scan of any sort. Is this the norm or should the condition of my joints have been more closely monitored?

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NeonkittyUK

Just a quickie from me Wishbone. I think it's all about £££ with the NHS and scans. I haven't had a scan in any of my specific joints in 24 years. I had a general isotope bone scan initially and two dexas. When I mentioned having a scan on my knee one rheumy went nuts and said only if you're going to have a replacement will I let you have it scanned! I'm going to ask for one now she's retired. X-rays they will let you have, but not scans. Ask for X-rays as they will let you have those I'm sure.

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wishbone

Thanks Nk, I thought money might be something to do with it. I'm not really bothered about it as I doubt having my joints monitored would have made any difference to my present condition. I'm just curious.

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Simba1992

I would keep away from x-rays if only possible. The accumulating radiation doses do have an effect on your health. I think people with chronic disease should be spared as much as possible from exams with radiation. The CAT scan is a very high radiation.

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Simba1992
Simba1992
in reply to wishbone

Hello wishbone,

No you do not always have synovitis when tested positive on RF or CCP. But if you have synovitis with positive CCP you most probably have RA ,if the synovitis is not caused by trauma or some other infection. It is synovitis that causes bone erosion in RA, nothing else.

Does sound strange that your situation has not been monitored by imagining more often. I would insist on having an MRI ( not any x- rays) or at least US to have a picture what the situation is today.

Here is some reading that may give more light on synovitis.

verywellhealth.com/what-is-...

Good night Simba

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wishbone
wishbone
in reply to Simba1992

Thanks Simba,

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Angels-delight
Angels-delight
in reply to Mmrr

Hi Mmrr andHelixHelix,

I have the same stiffness and pain in my hand. I have pain in my toes but not as bad as hands, wrists, elbows and shoulders. I had 2 Retuxan infusions 3 months ago. I called my Innomar nurse who arranges my appointments. He said he would fax Mt Rheumatologist to request an appt or a prescription for another infusion which I was advised that I can have after 3 mths if still in pain.

I should be a night owl as I do feel better in the evening. I am unable to open my fingers flat without bad pain for several hours. I can see the erosion in my fingers on both hands making it difficult to do many things and I live alone. My son and family are great and do a lot to help me.

I have been on many meds over 30 years but the last 12 mths as been the worst. I live in Canada so I have blamed the weather for the increase in my RD pain.

I wish you well and hope you have a really good Rheumatologist.

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Mmrr
Mmrr
in reply to Angels-delight

Hello !

I too am a night owl, always have been, but often feel better RD wise as the day goes on.

It's difficult as I then don't want to go to bed !

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PurpleGeck

I haven’t yet had an official diagnosis and aren’t yet taking any medication (just a steroid injection so far) but it was stiffness in my hands, especially in the morning, but that didn’t completely go away all day which prompted me to first visit my GP. That combined with tingling and pins and needles in all fingers. Sometimes it wakes me in the night. But I can’t describe it as painful, just a constant presence with varying degrees of sensation and stiffness. I still have full range of movement, although my hands sometimes feel a bit weak.

The rheumatologist was surprised that I don’t have any pain, nor do my joints display any visible signs of swelling or erosion, but x-rays show some inflammation and also my blood tests show positive for CCP antibodies and CRP (albeit it in the low numbers) so it’s looking likely I have RA). Other RA related bloods are normal. Have you had all of the possible blood tests?

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RJFS
RJFS
in reply to PurpleGeck

That sounds so similar to me - my hands 'fizz' at night and in the morning, I have pain all day and my feet are sore for a bit in the morning, or if I sit for a long period - I hobble like an old lady but only for ten mins or so. I can do everything - I type a lot and I can walk and get out of bed, but there is pain all the time in my hands, and the 'buzz'. I've never had the stiffness people describe and only one episode of swelling - its confusing. I go back to the rheumy mid march so will ask about bloods but I've had two rounds and so far all ok apart from I needed to increase my thyroxine....

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PurpleGeck
PurpleGeck
in reply to RJFS

I wish I'd thought of using fizziness to describe how my hands feel - all I could come up with was that they don't feel normal! But I did tell the doctor I feel like an old lady sometimes! When I first get up in the morning I feel like I'm hobbling down the stairs and instinctively reach for the bannister. But then I'm fine and can exercise as normal!

I've recently requested blood tests to check my thyroid function because I read that one of the symptoms of hypothyroidism can be numbness, pain and tingling in the hands and feet and want to rule everything out before starting on meds. Rheumy thought I might have carpal tunnel too and referred me for nerve conduction tests, but I had these a few days ago and got the all clear for CTS.

I did feel an almost instant difference in feeling following the steroid jab (a shot of depo medrone (edit) in the arm). My hands felt much better and I temporarily lost the granny syndrome! The tingling never went away 100% though. I'd say I felt maximum benefit for around 5 weeks - I had it about 8 weeks ago and I'm back to where I started!

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RJFS
RJFS
in reply to PurpleGeck

ok thats really interesting tome because I didn't have an obvious benefit form the steroid - so with that and no swelling since the episode 18 months ago I am just not sure it is RA - but if not then what - so achey today! This so much for replying. R

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PurpleGeck
PurpleGeck
in reply to RJFS

I do hope you get to the bottom of it soon! It just seems to be such a complicated disease, with no set of affects-all symptoms. It’s even harder if you don’t have particularly proactive healthcare providers. I am so thankful that when I first went to my GP complaining about my hands, the first thing she did was send me for X-rays and blood tests that included a CCP antibodies test. It’s almost as if it’s been caught too early, lol!

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RJFS
RJFS
in reply to PurpleGeck

Thats exactly what I said to my husband - it's like it is RA (it seems the closest match) but so early it hasn't quite settled into the normal road of symptoms..

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RA2018
RA2018
in reply to RJFS

I found this discussion very fruitful and thanks R for raising good questions! In fact I shared very similar experience with R. I started feeling morning stiffness/numbness just in my two fingers 19 months ago. 2 months later, I started feelin joints pain when sleeping at night, sometimes numbness. Morning stiffness last for only minutes and gone. But I feel pain in different joints whole day.

After ruled out all other options, I was diagnosed as Sero negative Inflammatory Arthritis (is it iRA?), and start taking Mtx since then. I am now taking 15 mg per week.

After taking med, pain was reduced but numbness and stiffness of joints increased. As I am from Asian country, I took Chinese herb to help improve blood circulation and reduce numbness.

Looking back, I am not sure if I am really RA and I may try other alternative before taking Mtx.

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RJFS
RJFS
in reply to RA2018

yes - sounds very similar, let me know how you get on. R

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RJFS
RJFS
in reply to PurpleGeck

Also - can I ask - did the steroid injection help? I had one a few weeks ago but can't say it made much difference to my hands though my feet felt a bit better

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Mmrr
Mmrr
in reply to RJFS

Steroid injection don't help me nearly as much as oral prednisilone.

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PurpleGeck
PurpleGeck
in reply to RJFS

Strange that you didn’t get any relief from the injection, but then again maybe not as everyone seems to be so very different in their journey.

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Mmrr

This is the first time I have heard someone use the term fizzy to describe their joint problems. It was one of the first terms I used, but it was dismissed outright by my rheumatologist. Thank you!

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Ssmart

I also Like that term fizzy!! My hands in the morning are definitely fizzy fuzzy 😁

They are almost dead when I wake up not quite like pins and needles but almost numb, like I’ve layed wrong but it’s both of them even if one is worse. My

Husband sometimes massages them

Gently if he’s around in the morning and it feels wonderful and I think it makes them “wake up”

They are not as stiff now I’m on meds (hydroxy) as they were, and I can pretty much I use them normally right away in mornings now, though I do feel my wrists are weak.

I work part time in a supermarket, and am

Just careful not to overdo things!

Hope you get some answers! X

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RJFS
RJFS
in reply to Ssmart

Thanks, thats so interesting - my GP diagnosed carpal tunnel at first but it doesn't fit - I know something is not right - I just don't know what! Glad to hear your meds are helping. R

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Ssmart
Ssmart
in reply to RJFS

They said could be carpal tunnel several times to me too I even had to go to nurology and have conduction tests in nerves in arm... but all was ok except found a random nerve that doesn’t conduct properly in one arm... an incidental finding apparently as wouldn’t cause my symptoms!

I ended up having millions of blood tests and one was very high I forget which one... and had positive rheumatoid factor too. I’d like these repeated- if I ever get to see rheumatologist again lol been waiting forever! Xx

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RJFS
RJFS
in reply to Ssmart

Thank you - good to know I'm not alone with these confusing symptoms - back to the rheumy mid march so will talk through it all then xx

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Simba1992

Perhaps some use of this comparison between RA and OA and diagnosis.

clinicaladvisor.com/home/fe...

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pd118

I am always in tub running water warm over hands flexing then wash underarms and face helps me

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thelmar
thelmar
in reply to pd118

I find it helps to squeeze a bath sponge whilst my hands are in warm water.

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Kariss

Hi RJFS,

Determining if you have RA, another inflammatory illness or something else entirely is notoriously difficult. Lots of other diseases mimic the symptoms of RA too which doesn’t make it any easier. My RA started in my feet although this wasn’t obvious as I also have osteoarthritis which had caused bone overgrowth in my big toe joints. It was only diagnosed when one of my fingers swelled and the knuckle became stiff and painful. I would liken it to the feeling of stiffness and throbbing pain from an insect bite or sting, such as a wasp or spider, especially when touched. When it didn’t heal I realised it was not a bite and the long road of finding the right treatment started. My bloods showed raised ESR levels but I was seronegative. During this time I also felt horribly tired with zero energy and stiff in all my limbs which ached constantly as if I was going to go down with a cold or flu. My fingers were like sausages on waking and the original culprit bent like a claw which couldn’t be prised open. I was depressed and anxious. In the mornings I had to come downstairs sideways I was so stiff, and it would take an hour to diminish. I also experienced the fizzing you describe. It took two years of trying different meds before I found one that sort of worked, although depot steroids always made me feel better for some weeks. This is just my experience and everyone presents differently so you may be totally different which is why it is so hard to diagnose the disease.

I suggest you ask lots of questions at your next rheumy appointment and if you can, take someone with you for moral support and to help remember what the consultant says! I have never been offered scans or ultrasound, but have had x rays of feet, hands and chest. This is a great forum for help and to meet like sufferers. My personal tips for self help are: soaking hands/feet in hot water, heated wheat bags for anywhere that aches, making sure you get plenty of rest and finding other ways to do simple but difficult things, (eg carrying a basket on your arm rather than by hand). Oh, and most important, make sure friends, family and colleagues realise you need help as this disease is hidden and to them you still look fine! There are lots of good tips on this site!

Good luck, I hope this helps a bit and you get the answers you need soon.

K xx

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RJFS
RJFS
in reply to Kariss

Thanks so much for this - it does help. I am always in a hot bath, and have lately noted that I instinctively carry bags on the elbow rather than the hand because of pain and stiffness. I have never had the 'unable to prise open' situation with a hand or finger, and also don't get the swelling - just the once - but am constantly tired and often sleep in the day despite a good nights sleep. I do have dislocating knees - so they hurt anyway and though I also walk sideways down the stairs in the morning that is mainly because of the knees. I also have hypothyroidism so that may explain the tiredness.... I'm 47 but feel a lot older! will take a long list of questions with me to the next rheumy appt. Thanks again. R xx

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Kariss
Kariss
in reply to RJFS

I think my RA probably started about your age but was undiagnosed for quite a while. I am 64 now and have been being treated for 12 years. I remember when I went for my initial consultation and was asked how I was feeling generally, my reply was: ‘ I just feel old!’

One other little thing I recommend is to keep working as long as you are able. Being around other people, although sometimes difficult, really helps your mental state - but make sure they understand your condition! I found colleagues were generally quite caring and helpful, even though they never seemed to work out what the difference was between my RA and their aches and pains from overdoing exercise! 😂I’m retired now and staying social becomes something that has to be worked at when you’re feeling stiff or tired from the disease and/or the meds! That’s when forums like this become so nice to have available.

Wishing you all the best xx K

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RJFS
RJFS
in reply to Kariss

Thanks Kariss, I work part time and have quite a long (and uncomfortable) commute, but my manager is wonderful and very understanding so I am now working at home 2 days and in the office 2 days. We are getting a puppy in May so that will keep me walking. Good advice I think to keep going as long as possible. R xx

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Kariss
Kariss
in reply to RJFS

That’s exciting! A puppy will keep you busy for sure. I’ve been thinking of getting a rescue dog recently myself as I really miss my old Labrador who passed some years back, but it would have to be a less energetic pooch this time as my walking is much limited. I do have a grandson though (and another due, also in May,) and that keeps me as busy as you can imagine, helping out! I just wish I could siphon off some of the little one’s energy!

Good luck for your clinic visit and keep us posted on how you are doing. K x

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RJFS
RJFS
in reply to Kariss

I know the feeling, my daughter is 13 and I wish I had half her energy! will let you know how the rheumy appointment - and the puppy! - go - :)

Rx

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Ann2019

Ask your GP to test you for anti-cccp antibody blood test. That has the highest specificity for having ra than all other blood tests. That being said, even if you are positive, if you don’t have the extreme symptoms that some have with pain, swelling and inflammation, then you may have a mild case of it, in which you can deal with it by taking naaids, supplements and diet modification. I would avoid the biologics if possible, because they are quite hard on your organs and immune system. People have different types of ra, and you don’t have to help yourself with only medications with harsh side effects.

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RJFS
RJFS
in reply to Ann2019

Thanks Ann2019 - will talk to my rheumy about supplements and diet. R

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helixhelix
helixhelix
in reply to Ann2019

Remember that RA can be 'silent', so if you have raised inflammation markers it can be attacking your internal organs even if signs on the joints are not that obvious.

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Shalf
Shalf
in reply to helixhelix

I'm seeing my Rheumy tomorrow, must ask her about this as its scared me to read your post this morning.

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helixhelix
helixhelix
in reply to Shalf

I didn't mean to scare anyone. However we often focus on joints and forget that RA is a systemic disease that can attack other parts of the body if you have widespread inflammation.

nras.org.uk/the-effects-of-...

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Shalf
Shalf
in reply to helixhelix

Think it can be said for the other way around too as I have active inflammation in my hand/wrist ( hence seeing Rheumy) yet ESR is low. Very strange disease!

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Simba1992
Simba1992
in reply to Shalf

I do not think you have to worry too much. It's all about inflammation. RA is a systemic disease witch means we have more inflammation in our bodies. Inflammation is always a stress for our body and can lead to other AI diseases as well, like diabetes, cancer, Hashi, CVD it all depends on our weak points and the level of inflammation. The inflammation, synovitis in our joints in RA very seldom cease to exist even with RA meds but it is often decreased.

In other words the less inflammation we have, the more we support our body's normal metabolism , take care of underlying dysfunctions the better chanse we have not to get other problems.

I think you are doing a good job at supporting your whole body.😊👍🏻xSimba

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Shalf
Shalf
in reply to Simba1992

Thanks Simba

The inflammation just loves my right hand! I understood if it affects a joint/s on one side it likely affects same joint/s other side. My leftie is fine 🤣

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Simba1992
Simba1992
in reply to Shalf

Your Sed rate being low is a good sign for low inflammation😊

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helixhelix

Yes, it's the inflammation. Which is why it worries me when people who have raised inflammation markers say "oh, I can cope with pain" and dismiss taking any meds or tackling the inflammation. Even if going for the lifestyle approach you need to keep monitoring.

I have very low inflammation markers, even when I have puffed up joints that are bright red and throbbing. I put it down to my good lifestyle.....but doesn't help when trying to convince people that I am flaring.

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wishbone
wishbone
in reply to helixhelix

Like what happened when I abstained from meds and inflammation managed to get into my lungs. However, my abstention was not without good reason, as you probably know I was recovering from sepsis and was scared stiff of getting it again as it was linked with taking a biologic. That said, I definitely think I could have gone about things better than I did.

Something I've noticed with my RA is that unlike many people here who complain about hot red swollen joints, I only had that type of thing very occasionally. An abundance of pain in multiple joints that's for sure, but not much in the way of hot swollen joints, and yet I have quite badly deformed hands and feet an no doubt have varying degrees of erosion in a number of other joints. Oh, and let's to forget my messed up lungs! Seems a bit strange to me how my RA, which doesn't appear to be too bad on the surface can do so much bloody damage!

I've not long come off the phone after speaking with my rheumy nurse who told me that my last blood test a month ago showed a significant drop in my inflammation markers, which now stand at 28. Do you think this is still a little high as she didn't seem entirely happy with it?

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helixhelix
helixhelix
in reply to wishbone

Well I get fretful if mine go over 8.....

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wishbone
wishbone
in reply to helixhelix

Several expletives come to mind, but a diplomatic oh 'eck will suffice for now!

I'm glad I didn't think to ask the nurse what my markers were before they decreased, or I'd be really down in the dumps as the way my RA currently feels they are on the way back up, hence my phone chat with the rheumy nurse who is arranging for me to see a rheumatologist.

I'm at a quandary yet again!...my options with meds are few. I know that rheumy will want to increase my baricitinib from 2 to 4 mg, but with my infection risk I just don't know what to do for the best.

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helixhelix
helixhelix
in reply to wishbone

Imagine if your markers were 327? You'd feel brilliant that gone so low..... Mine have always been low or low'ish, so I'm not a typical example.

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wishbone
wishbone
in reply to helixhelix

Is that about as high as they can go?

I've never bothered asking what my markers are, but think I can recall my rheumy telling me they were sixty something at one time, but have a feeling that they have been much higher than that. It might be interesting to find out. Do you think rheumy will tell me if I ask?

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helixhelix
helixhelix
in reply to wishbone

They are your results! You have the right.

Because I'm a nerd I have spreadsheets of my results going back to first tests...and it's actually very useful as I've learnt what is normal for me - and what's not!

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wishbone
wishbone
in reply to helixhelix

Thanks helixhelix, I'll find out when I see my rheumy.

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Angels-delight

I was advised several times by my Rheumatologist that I have carpel tunnel syndrome as I have pain in my fingers to my wrists and I also have nodules in my finger joints and in the palms of my hands. I haven't had any test on my hands to check if this is the case. I am going to mention it again to my Rheumatologist next time I see her.

Take care

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Angels54

Hi This exactly how I have felt , hands are worse on morning, if it is RA you need to get medication ASAP .

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Angels-delight

I went to see OT in Oshawa 2 weeks ago she said it isn't Carole tunnel syndrome. It is cause of my RA and I should have been referred 12 mths prior and not ignored.

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