im new here and in pain, GP says arthritis but all test not

cindyjonas

Hello all, I am new here.
I am 34 and had an hysteroctomy at 24 but kept my ovaries because i was too young.
About 2 months ago i started with right wrist pain (like tendonitis), i wore a wrist support but never help much, the pain went to the left wrist (both side were painful under the thumb area with swollen), after a few days my fingers started to ache (from the middle down) and each knukkle of my fingers (hands) were hurting badly. Went to the GP, been told it was carpal tunnel symdrome but i refuse to get injection because i wasn't sure about that. within a few weeks my right ankle started to ache and now my 10 fingers, both ankles, bottom of my neck and just under my shoulders (between shoulders and biceps) are hurting with really really bad pain when raining. Went back to the GP, she sais that it is deffo arthritis but my blood test and xray are normal. She did referred me to Rumathologist about 5 weeks ago but still waiting for appointment. She want me to try some cortisone injections but i am scared to start. I am so much in pain that i may ask to try it. Has anybody had the same problem (arthritis but nothing show on test. I am so tired (sleep well but early up and once up i can feel the pain all over) PLEASE HELP

lindalegs

Hello Cindy and welcome to the site,

I'm sorry you're in so much pain and how awful for you to have had an hysterectomy at such a young age.

You can get sero-negative arthritis which needs a different sort of blood test as it doesn't show up in 'normal' tests but your rheumatologist will possibly do those for you.

The inter-muscular steroid injection will give you temporary relief from all the pain so it might be worth you trying it to see if it helps.

In the meantime try to keep a 'pain diary' so you can use it to show your rheumy perhaps with scoring your pain between 0 - 10. Ten being the worst pain you've ever experienced. The other thing is to make a list of questions for when you get your appointment.

Hope things start to ease soon.

Luv,

earthspirit

sorry to hear you are in such pain and i understand how you feel about trying new treatments without a proper diagnosis.

from my own understanding, it does not matter if you have arthritis or not when using the steroid injections, hopefully they will help reduce inflamation and ultimately the pain.

i know lots of people on here have had multiple shots of these over the years and for some they work and others they dont.

in my own case, the first one worked really well - took about 3 days to kick in and at first felt a bit worse then rapidly reduced increadible swelling in my fingers hands and wrists. they lasted about 4 weeks.

i had this repeated about 9 months later for my knees and they had no effect at all but in both cases, did not seem to do me any harm.

the shot was in my **** and virtually painless - less than giving blood samples.

as you are in so much pain at the moment it would seem like a good option until they find out what is actually wrong with you. im sure others will come along with more advice. in the meantime, keep up with pain meds and my old weapon of cold damp facecloths round the joints does help it ease off a little

hope you are feeling better real soon

stickywicket

Hello and welcome from me too. Legs has given you some excellent advice. It’s all very scary at first but you are not on your own. There are people on here with sero-negative arthritis and I’m sure some will be along soon.

I don’t know why your scared of the cortisone jabs but my advice would be to get them asap. They don’t work for everyone but, for many of us, they work like a dream. However, they are not a cure, so don’t be misled. They are to tide you over until the real meds kick in. Your rheumatologist will decide what they are – usually methotrexate, sulphasalazine, hydroxychloroquine or some combination of them.

I’m afraid the tiredness is part of the disease but, hopefully, once you’re established on some meds, you’ll feel much better.

tjt6768

hi and welcome from me too. Sorry that you are suffering so much..
I would consider giving the injections a go, there us nothing to lose. I've had a few now, some helped, some did nothing, BUT, I would have another tomorrow if there is the slightest chance it would help..
I have sero-negative arthritis, I have no rheumatoid factor showing up in my bloods, but the symptoms are all there and the treatment is basically the same. I also have Osteo arthritis too.
It can seem a bit overwhelming which is where this forum is priceless.
We are all here to help one and other...
Keep on posting your questions etc and we will do our best to help. You are not alone that's for sure..

Best wishes

dibdab

Hi there- welcome aboard, but sorry you had to find us. I also have sero neg RA and take hydroxychloroquine and sulfasalazine, with gold injections just started to add to the cocktail. Trust your rheumatologist, they will persevere until they find the combination you need. The steroid injections really don't hurt and take a few days to kick in, but the relief is wonderful when they do. Try not to worry too much, and try to get rest when you can, the fatigue thing takes so much out of you. Hope you get some relief and support soon.

Deb x

hileena111

Hi Welcome to the forum
I've got OA and havent had to have cortisone injections but know of lots of people that have. Lots have come on saying that yes its possible to have arthritis without any rheumotoid factor.
Sorry I'm not much help...just wanted to welcome you
Love
Hileena

refereerick

Hi Cindy,
I'm new here too (6weeks). I've had the symptoms come on very quickly, and on the first blood test for RA mine came back as negative. I've seen about 5 different GP's and a rheumatologist and they all seem to agree its arthritis in some form. I had a steroid injection and to be honest its not done much for me, but its no different from having a blood test and its worth a try.
I'm off to the hospital to see the rheumy nurse on Friday and I think i'm being put on methetrexate. Hopefully they might have more info on what I have by then.
I've found cold packs on the inflamed joints help and if your feet/ankles hurt, a bowl of as cold water as you can bear, and soak your feet, its really helped me.
I hope you get some relief soon as I can sympathize with you as the pain can be overwhelming.

Take care, Rick x

barbara12

Hi Cindy
The others have said it all, I just want to say welcome to the forum, I and do hope you get your appointment very soon, I have had many injections, some work some dont, but everyone is different you must give them a try.
Wishing you well with it all, and please let is know how you get on x

cindyjonas

Hi and thanks to all of you. I think I will call my gp tomorrow to organize these injections.
The gp was not sure what kind of arthritis It is but due to the hysterectomy it may be osteoarthritis, I just feel so (kind of ashame) some days I can't even open the bottle of milk. The swollen are not bad these days but the pain is so wild. Another I noticed is even when I drive it hurts. Another 2weeks ago I noticed a very pronounced black dot in my right eye, the doctor mentioned that it could be linked with osteoarthritis.I don't really know what to do and who to talk to as I am scared that the doctor think it's all in my head.

Again thanks to all your comment and any suggestions please feel free

tjt6768

good luck with the injections and I truly hope they help.

The black spot? Not heard of that one, but there are quite a few folks on here far more knowledgeable than me, not a hard task lol


Best of luck with things. Hope you make yourself at home here on the forum.

cindyjonas

To be honest I'm not really bother about the dot but I will definitely call the surgery to arrange the injections.

Do anyone know if the pain is going to go away and if I will be able to have my life back? I know this is maybe sully but I don't know what to expect

tjt6768

I really wish we could answer that mi dear.
Truth is we don't know...
Given the right treatment some folks do great and live a normal life etc.
I hope you will be counted among them
Only time will tell though..
Besides, when the treatments don't work as they should, as humans we learn to adapt...
Then we try another treatment..

Best wishes

stickywicket

There is absolutely no need to feel ashamed because you can't open a bottle of milk. You've not done anything wrong. As for driving - yes, I can remember how that hurt.

Your GP is certainly not giving the impression that she thinks it's all in your head. On the contrary, she's referred you to a rheumatologist and is offering jabs in the meantime. For my money, take what's on offer. The sooner it's dealt with the better.

Will the pain go away? Will you get your life back? No-one can say. Both are possible but I don't know how likely. Certainly steroid jabs can seem like a miracle cure for some but they're not a cure, just a temporary relief. I know nothing of black dots in eyes but I certainly would make sure the GP and rheumatologist stay aware of it.

Let's know how you get on.

cindyjonas

Thanks sticky and tony. I will ring the doctor. First thing tomorrow.

tjt6768

a pleasure..
Wish we could do more..
Have to fight this horrid disease together lol..

skezier

Hello Cindy

A late welcome from me as well.

The others have said a of of what i would have said already but the one thing I really did want to say is it honestly does get easier and the fear diminishes as you get used to it.

I hope the rumo will see you soon and the steroid jab in your bum is the depot medrone but your gp may have to send you on to the hospital to have one as not all f the docs do them. Mine don't.

Not all the arthritisis show in bloods and unless you have joint damage it doesn;t show under x-ray either so thats a good thing in a way. The rumo will sort out some treatments and also what kind you have but in the mean time try to stay calm.

The helplines might be able to help if you ring them (their number is at the top of the page).

hang in there flower and hope you will son be seen and feel a lot better. A cyber ((( ))) and a hope Cris x

frogmorton

Hi Cindy

and welcome from me too.

My bloods are all negative too, but the rheumatologist has treated me. I am sure you will get the help you need.

I am a good girl and take my medication as prescribed....try to do a little exercise (swimming and walking) not overdo anything and so far so good I feel pretty well.

My best advice is as it always is to keep talking - and this is a really good place to do that. Fear of the unknown is the very worst thing and once you feel informed...it is all less frightening.

There is life after diagnosis

Love

Toni xxx

cindyjonas

Hi Toni,

It is true i am kinda of scare of the not knowing factor.

It is just that i am feel falling in bits, 2 years ago i have been diagnosed with coronary arteries spasms and need to take some medications every day for it. now this, it is not fair on my family, my little boy is 12 and see me in pain and that is not right at all. sometimes i really think it is all in my head. on my fingers, wrist and ankles the pain is really at the joint area and feel like a spreading pain for a few inches either way of the joint (is this normal?) but my shoulder bit is really weird pain because it is just under the shoulder and arm joint (if that make sense) the pain is like about 1 inch under the arm bone. Currently i am taking some medications not prescribed in the UK because the naproxyn is not working well and give me so much of a bad stomach, i am taking Brexine which is very good for the stomach, my GP told me to buy some more when i go back to Belgium.

frogmorton

Hi Cindy

Honestly when this first happened to me I cried for a week solid and couldn't no matter how hard I tried think about anything else!

Like you I wondered if I was going mad/imagining things! Time cures that bit - I think sometimes the mind struggles to process frightening things so we try to ignore them,

My kids were two at 13 and one at 10 at the time. I tried to hide it from them as well, but now they are fine with it.....not worried at all.

So long as your GP is happy for you to take your medications from Belgium I am sure it is fine.

For now a useful thing might be to start writing down what has happened for the rheumatologist. It is a practical thing you can do now at least. Include other things like if you have a fever, or are very very tired etc.

and keep talking to us lot

Love

Toni xxx

cindyjonas

rang the doctor this morning to have the injection, but when i arrived the doctor told me that she doesn't want to give me injection as too many joints are affected so she did give me some oral steroid, 40 mg to take each day for 1 week so when i go to the Ruma doc we will know if they work or not.

Fingers crossed

x

Harlansmummy

Another one here who has been told I have some form of arthritis but am showing negative on bloods. The body is a strange thing :?

I hope the steroids help

cindyjonas

hi Harlans,

I have been given some PREDNISOLONE to take (8 tablets) each day as a trail before meeting the RUMA, i really really hope that they will work.

I can't believe how many people have arthritis but nothing show on test.

I thought i was going crazy but i starting to realised that im not alone which is making me feel slightly better (i know this sound weird).

The GP was really nice today, she did say that she was expecting me to start some steroids medication view the pain i had.

I am glad that i found this forum to be honest because i think i may have wait even longer before trying any meds.

Just a matter of time now to see if it work or not.

tillytop

Hello Cindyjonas and Harlans Mummy and a belated welcome to the forum (apologies if I have already welcomed you - brain a tad addled just now :roll: )

Cindy, really glad you have got some prednisolone pills which will hopefully tide you over until you see the rheumatologist. Whilst steroid injections don't work for everyone, from what I read on here most people seem to benefit from the oral pred so hopefully it will help you. It certainly works really well for me and, although it is not a good long term solution, it can be very useful as a "stop-gap". 40mg daily is quite a hefty dose so hopefully you will start to see some benefit soon. Please do let us know how you get on.

Tilly xxx

cindyjonas

Hi Tilly,

LOL yes i did look to my GP a little weird when she told me to take 8 tablet each morning, but she said that it seems that i have an aggressive arthritis as in 2 months i got so many areas. But she did tell me that that should work within 3 days and that would give us a good indication of the kind of arthritis it is.

As i told her today i had expected to have knee problem as i had a really bad accident in 1991 and had lot of cartillage replacement on it but have a guess, NOPE my knee (up to now) is fine, my ankles are really sore once i stop walking or standing up (i think that during the day i can feel them but i try to move them as much as poss to minimise the pain)

I hope that the meds will start kicking soon and hopefully i will not look stupid trying to open a bottle of milk by myself.

Shooter

dibdab wrote:

Hi there- welcome aboard, but sorry you had to find us. I also have sero neg RA and take hydroxychloroquine and sulfasalazine, with gold injections just started to add to the cocktail. Trust your rheumatologist, they will persevere until they find the combination you need. The steroid injections really don't hurt and take a few days to kick in, but the relief is wonderful when they do. Try not to worry too much, and try to get rest when you can, the fatigue thing takes so much out of you. Hope you get some relief and support soon.

Deb x

Wish i could say same about my rhumy i made my self wait 24 hours after my apointment before i did anything other wise i would have written to her hospital and the bma i am that disgusted with her [text deleted] sorry rant over steve.b