As any one else been like this

jilly

Hi . I have just been back to the doctors because i am feeling horrible again and in a lot of pain. She is sending me back to the RA specialist. I have said before i have OA and had knee replaced and hip but i am having a lot of pain in my neck and shoulders and feeling really ill. It seems to come and go the feeling ill and the pain gets worse . I have noticed if i am feeling really ill my hands seem to be more painful and swell up mostly the thumb and 2 first fingers. The other thing that seems to worsen is my voice i always have trouble with it but it goes worse then. One other thing that i am getting is dry mouth and eyes . Is anyone else like this or knows why i could be having these things happening to them.
Happy New Year to you all .......jilly

arty

Hi Jilly

Poor you, sounds like your going through it. I have RA and dry eyes and mouth can be symptoms, so can aches/pains in hands fingers etc....maybe see a RA specialist? It can make you feel very tired too, which means you need to take some rest, I hate that as it makes me feel lazy.

Hope you get to the bottom of your problems....let me know how you get on ok

Wonkylegs

gosh that is a tough question, and one really that only your doctor can answer for you, as they can examine you as well as listen to your symptoms.

What I can say is that I have Rheumatoid Arthritis, and I have had all the symptoms that you describe at different times in my journey, though not all have ever been put down to the RA

it is never easy with such a systemic disease to know what is the disease and what is something else, so you really do need to get anything unusual checked out by your doc.

It is good that you have a referral to a rheumy, and perhaps keeping a symptom diary would help you when you get to see the Rheumatologist.

good luck

WONky

jilly

thanks for the messages i hope the RA specialist can sort it i have been to see them about 2 years ago but they couldnt find anything.only OA .I have been diagnosed with underactive thyriod which i have slowly been given thyroxine for i am up to the right dose now and hoped all that would have sorted everything else out but it has'nt . anyway thanks for the advise . I will post when i have been to the specialist . ....jilly

woodbine

Hello Jilly,

I have a hereditary form of OA, which is currently in my back, knees and hands. Recently I've also started to get pains in my neck, and like you I find that my fingers and thumbs can vary in size from one day to the next - sometimes swelling and becoming very painful over night. I also have lumps on some joints, and bend in my little fingers.

My mum has the same condition and probs with her hands (not surprising as it's hereditary!), though obviously she's had it for longer than me. She's also had problems with her voice, extreme tiredness and dry mouth and eyes. These 3 symptoms were put down to a problem with her thyroid, which was operated on to reduce its size a few years ago. She no longer has problems with her voice, but still has problems with dry eyes. We both feel that the dryness of mouth/eyes is partly down to the medication (co-codamol/co-dydramol).

The OA and thyroid both seem to be connected wtih immune systems. Both our GPs seemed to think that our swollen/lumpy fingers indicated possible RA, but blood test have shown this is not present in either of us. Both of us wish that we could be reffered to a rheumy or similar as we'd like to know more about what's happening, and why so many joints are involved, but our respective GPs don't seem to feel this would help.

Hope you can get some help though! It's good to know there are others out there who know how we feel

Naomi

jilly

woodbine wrote:

Hello Jilly,

I have a hereditary form of OA, which is currently in my back, knees and hands. Recently I've also started to get pains in my neck, and like you I find that my fingers and thumbs can vary in size from one day to the next - sometimes swelling and becoming very painful over night. I also have lumps on some joints, and bend in my little fingers.

My mum has the same condition and probs with her hands (not surprising as it's hereditary!), though obviously she's had it for longer than me. She's also had problems with her voice, extreme tiredness and dry mouth and eyes. These 3 symptoms were put down to a problem with her thyroid, which was operated on to reduce its size a few years ago. She no longer has problems with her voice, but still has problems with dry eyes. We both feel that the dryness of mouth/eyes is partly down to the medication (co-codamol/co-dydramol).

The OA and thyroid both seem to be connected wtih immune systems. Both our GPs seemed to think that our swollen/lumpy fingers indicated possible RA, but blood test have shown this is not present in either of us. Both of us wish that we could be reffered to a rheumy or similar as we'd like to know more about what's happening, and why so many joints are involved, but our respective GPs don't seem to feel this would help.

Hope you can get some help though! It's good to know there are others out there who know how we feel

Naomi

Hi Naomi , thanks for the advise ,as you say why do so many joints get involved , i have been told that OA is wear and tear i must have been hard on my body if that is always the case . I have seen a rheumy a couple of years ago he was very dismisive , I think there is something else going on when all you joints are painful . The trouble is by the time they sort me out if ever i wont care , i think I will have stopped caring. sorry i am giving way to my inner feelings , as you said it is so helpful to have others that have the same problems .......jilly

woodbine

Hi again Jilly,

I agree - there must be more to this than just 'wear and tear'. i started having problems in my late 30's (I'm 41 now) as did my mum. I hardly think we'd worn so many joints out by that age! it is very dispiritng that, as you say, it just seems to be dismissed. My GP did say that it might be something wrong in the genes that carry the 'instructions' for constructing cartilage, so that it isn't made correctly in some people, and so wears out quickly. The body tries to replace it with more wonky cartilage, which mostly wears out too, but begins to leave bits around, which explains the lumps apparently.

This is the explaination for some cases of multi joint OA, especially where it runs in families, but he can;t say if it's the case in me specifically wihtout an expensive DNA test, of which there's no chance on the NHS, obviously.

I read (in a library book) recently that OA costs the country more in sick leave than any other condition, and is suffered from by more people than cancer , heart disease or altzhimers, but gets less research than any of them. Understandable in some ways as we don't die of it, but none the less very frustrating when you're aching all over!

Naomi

jilly

Hi again Naomi ,That is very interesting I have not heard that. The trouble with GPs is they see so many people with arthritis because most people over 40 have a bit , they dont think we can be in so much pain when we have multipule joints involved and as you say we dont die from it even though some days we think we might ........... again thanks for the help .....jilly

suncatcher

Dry eyes and mouth are symptoms as are the others you describe. It is good you are going to the specialist to find out for sure as there are others similar best to know for sure.
your body needs a rest take it easier it sounds like a flair. Hope you get your mind put at ease soon from the doctors just take care now x Joanne

crinkly1

Hello Jilly,
I've had similar symptoms for more than 20 years - and yes, it's recognised as hereditary 'Nodal OA' that typically affects fingers first then can affect nearly all joints. It shares symptoms of flare-up, inflammation and chronic pain with RA but blood tests are always negative which puzzles some GPs.

Being 'only' OA makes it difficult to get access to a Rheumatologist and virtually impossible to have on-going Consultant support so I well recognise your feelings of despair at ever getting answers. (I'm profoundly thankful that I don't have one of the more destructive versions of arthritis and I know that NHS resources are limited but this isn't easy to live with either.)

It can be really depressing but you need to stay as positive as possible and be persistent in asking for the help you need. Take heart, research as much as you can about the condition then help your GP appreciate the problems and be prepared to push (very) hard for help.

(Sorry - I'm useless at adding Smilies etc but am cheerful, honestly!)

frogmorton

Hi Jilly

I am glad you are being re-referred to the rhuematologist.

I am sure you need and deserve more help than you rae getting at the mo.

You clearly have a good GP who will put something in their request about your symptoms which should mean you are taken serioulsy.


Love

Toni xx

woodbine

Hi again everyone.
It really does help to know that there's so much sympathy / empathy from fellow sufferers out there! The nodal version of OA that you mention Crinkly1 sounds exactly like what I have - the blood test results seem to confuse my GP too. What you say about being grateful not to have RA and it's destructive symptoms, while struggling to live with the symptoms of this type of OA - especially the inflammation and all-over effects of it is exactly what I feel.
Do you have any idea where I/we can get any more info on it, please? I have tried to research it on the internet, but without a great deal of sucess, and as I mentioned, my GP doesn't know much about it, but doesn't see the need to send me to a rheumy - which, as you say, is a common problem too. I think that I'll put a question on the helpline board to see if they can provide nay more info.

Thanks again everyone.
Naomi

tweedie

Hiya ,
The dry eyes etc is often Sjorgrens Disease , it is one complication of having arthritis , there are articles about in from arthritis care. Isn't life just fun sometimes lol
Joanna
(Tweedie)
xxxx

tillytop

Hi Jilly

I am so sorry you are struggling so much at the moment. I am glad the GP is sending you back to the RA specialist again and hope you don't have to wait too long for an appt.

I was very interested to read what you say about your voice because I have the same problem - at times in the past I have found it difficult to speak. It had never occurred to me that it could be anyting to do with the RA (even though I also have dry eyes and dry mouth) and, when I have mentioned it at appts it has just been dismissed. But since I have been taking high dose steroids, my Mum commented that she could hear my voice properly for the first time in about 10 years, which suggests to me that it could be part of the inflammatory process.

Sjogrens syndrome is well known as being secondary to RA so it would definitely be worth mentioning it at your appt.

Thinking of you.

Love Tilly xxx

crinkly1

Hello again, Naomi and others.

Re Nodal Arthritis I was very fortunate to be seen, on my very first referral, by a professor of Rheumatology who told me about new research having identified this variety of OA but it was without a name then and it's been difficult to explain it to GPs who think strictly in terms of 'wear and tear' - usually in one or two joints. (Because I was a PE teacher they were convinced that my arthritic joints were the result of excessive sporting activity or injury!)

I have, over the years, scoured every library and internet site for more information and found USA websites the best informed. But there's not much out there!

Thankfully, after many years of battling on, my latest appointment was with a young female Rheumy who is conversant with Nodal OA. Her letter to my GP should ensure that I'm heard with greater understanding and she offers to see me at any future time if things are particularly bad again.

In the end, as for any form of OA you have to find your own best way of dealing with things but when hands are too painful to use a walking aid and knees and hips too sore for comfortable mobility it's a real dilemma. At least I shall now have confidence to be more assertive when I need treatment in addition to the usual medication!

My best wishes for your referrals and my hope that you get a clear diagnosis - it's always easier to confront reality when you know what you are up against.
Alison (the creaking wrinkly)