polyarthralgia due to seronegative inflammitry arthropathy

debbien

Hi DD and Suzy girl
hope i am posting this in the right place now! Please can someone explane in english or should i say simple terms what am i suposed to do now?

I have recently had a phone call to tell me that my rhumatoid factor is high they must have the blood test results back, fourtunatly the exray results are fine, so that leads me to excuse my ignorance but i need to make an appointment with my Dr about this what are the questions to ask as i dont know what is rhumatoid factor and what does it do if they are high then will it make my condition worse or is that part of the condition. Excuse me if i am being a bit dim but i am taking tramadoll when the pain is very severe and loosing the day as this makes me sick and makes me sleep more than usual,however sleep seems to be one of the things icould still be asleep at dinner time if i allowed myself. i take Naproxen for the inflamation and amitriptaline which is supposed to relax the muscles, however i find this also makes me sleepy and feel like i am in a daze, but a different daze to the brane fogg. Sorry to go on i feel like a hypocondriac and am sick of 'moaning' but not in a nagging sort of way, all i want to do is just get on. I used to have a very bus life i am only just 50 and would like to run around with my two grandchildren but my condition slows me down. I used to work full time and go to college once a week on a night do courese work and go to the jim, 4 years ago i ran the race for life and in the past 2 years i feel my condition has put my life on hold.
Thanks again any light on the subject would be appreciated.

Debbie

skezier

Hi Debbie,

First your not a hypercondriac! Whats happening to you is very real and so wrong actually.

In simple terms... there isn't one really as such. The rf factor can mean you have ra, but not always. I think it depends on how high it is but couldn't swear to that.

The amitriptyline is able to relax muscles but I think its also a sleeping tablet or is an aid to get you to sleep. A lot of folks here take it around 8ish and that way they get a good night sleep (hopefully) and don't feel so hung over in the morning.

You need to ask your doctor to send you to a Rumo for sure Debbie. That's so important as the xrays didn't show anything and the joints need protecting.

I think thats really what you should do. Ask to see a rumo and hang in there the drugs can tale a bit of time to get used to but if they don;t work or don't help your gp can change them and try some other combination cus there are so many and some combinations don;t suit us while others do.

You need to see a rumo though flower and once its all being treated and controlled you will find it easier. Hang in there. Cris x

debbien

Hi Chris
I should have explaned i have been back to the consultand he now says it is in conjuction with fibromialgia however when he has writen it in the letter he has put ?fibromialia so i guess he is thinking about it. He has changed the medication though and i will see how it goes he still says if i get realy bad flare ups then to go to A&E so they can use an injection to controle the pain does this sound right as i feel like the treatment is to manage the pain and not treat the condition? not sure if i am just not understanding the actual condition, the exray was for the sever pain i was in from upper back pain that went right round into my left breast which was so severe i couldnt breath, however the consultant didnt have the information passed on to him fromA&E dept so he asked for exray. This all seemed to start 2 years ago i had a very bad flu virus and cough but i thought i had a chest infection then Dr said no so i plodded on and then kept going back to DR she eventually sent me to consultant after a while and 3 payments later they realised i was being passed to the wrong dept they said i shouldn't of had to pay but it seemed quicker at the time to get treatment for what apeard at the time to be a mistery, so now have the right consultant but not realy understanding the condition! hey ho! I now need to go to the GP to enable her to monitor meds and do repeat perscription if she thinks it works. I would appreciate any light on this as i have barked up the wrong tree for so long its not better its worse more pain and because pain killers dull the pain i havent notice untill recently just how bad as i was told three months ago to only take it when needed so therefore i would wake up in the morning and find i couldn't move for pain hence A&E.
hopefully for your replys
Debbie

skezier

Hi Debbie,

I would have thought your first thing has to be about the RF factor when you see the gp. On the strength of that and your joint pain really I would have thought they would be giving you some kind of disease modifier.....

So ask about that or ask if you could/should see the rumo again for that.

The trouble with fibro is it doesn’t have a treatment as such. The ampi's I am not on but a lot here are and they could advise you better but I would have thought you would be taking them daily....

Debbie I think you need both the test result and your treatments clarified actually.....

For the fibro it might be worth asking about ether gabapentin or pregabalins. Both of those help but the pregabs are the better though they do mess with your head here and there as you get used to them. I do 600 a day and it really does help. Mind it took a year to get to that dose

I can't help thinking g you need a treatment plan and Debbie I don think they could be doing more for you actually..... Don’t like to say that but this rf thing needs to be clarified.

Hey you’re about late and I hope you can get some sleep soon. Hang in there. Cris x

dreamdaisy

Hi Debbie, you found us! I am sure some others will be popping in soon to say hello, you are in a very similar position to quite a few on here but at least you have a positive RF (which would indicate RA) you are on some meds (the pain control does not ever take it all away, it takes time to adjust to living with a certain amount of pain but that has to be done) and I think if you ring the helpline they may well be able to help you sort out all the thoughtsw whirling round. Some sorting can be done via writing, but sometimes nothing is better than talking to someone who understands.

One of the biggest problems with GPs and consultants is that because they know stuff they think we know it too. We have to point out, on a regular basis, that we don't and that they have to explain things to us. It is not easy to 'challenge' a doctor, but it does need to be done from time to time.

Keep a diary of your symptoms, what helps and what aggravates, that will help the doctors gain a clearer picture of you. Although all of us on here have some form of arthritis we all vary in how we are affected, everyone's arthritis is unique. I have to dash off now, I will pop back later and see how you are doing. Take care. DD

debbien

Hi Chris and DD
The diary sounds a good idea you two seem to have the measure of it! I do have a funny sleep pattern not sur if thats the meds, there are times when i cold sleep all day all night too but every so often i have nigt where i cant sleep at all,however if i do sleep too long i have trouble moving as everything stiffens up therefore i am unable to do daily tasks even siple ones my legs and feet drive me crazy my shoulders feel as though i have 10lb wiegts on them.
I am finding you all to be very helpful and feel you have more understanding than GP or consultant is this because you realy do know how it affects a persons life.
Thanks for now
Debbie

dreamdaisy

Tiredness is is a factor of any type of arthritis, it can also be a side-effect of medication (or the interraction of some meds) - as I said we are all different in how we are affected. One trick is to rest during the day, break larger tasks down into smaller bits with a rest in between (especially on a bad day) and generally just be kind to yourself. Your life is changing, there is no doubt about that, but remember we are always here (me especially!) and we will do what we can to help. DD

PS I am in my fifteenth year of this, skezier has been coping for considerably longer. She is a remarkable woman and as you get to know us all I am sure you will find that too.

debbien

HI yes the condition does seem to make me have days of rest and consecuativly until i can all of a sudden get up in a morning and instinctivly feel that it is going to be a good day. However as i said i up untill two years ago did work full time doing a very physical job ( advanced teaching assistant to children and students with pmld and other special needs) pushing wheelchairs pulling hoists and equipment walking daily such as pe type and along side that all the family things.
Your right my life certainly has changed and is still changeing, because i have been on long term sick for so long while the Drs and consultants diagnose and try meds, i have now lost my job as they were uable to keep my post open indefinatly, even though i know i wouldn't be able to do all things that i used to in a day i am not the sort of person to not do anything and am finding it very difficult to get my head arround the condition and the knock on effect it is having. Realy i just want to get on and be able to turn the clock back 2 years!
Is it just me or is this what everyone goes through?
talk again soon
Debbie

dreamdaisy

You have had a tough time, arthritis takes its toll and not only on our joints. It affects everything. As time goes on you will begin to adapt and adjust, to learn to make the best of the better-feeling days and to ease up on the not-so-good ones. It's a steep learning curve. We are all on it, some are steeper curves than others but we do know what it is like. DD

frogmorton

Hi Debbie

a very quick welcome to the forums from me.

I see you ahve had some great advice and hope that soon your doctor will refer you to a specailist (rheumatologist) for treatment and to keep an eye on your arthritis.

Love

Toni xx

skezier

Hi Debbie,

Fibro brings advanced fatigue as well as the bone thing..... its not an easy one to break through either.

Have they got you on any meds other than the Naproxen and the ampi's? As a general you should have an anti-inflammatory and also decent pain control.... I know the Naproxen is both those but it clearly isn't working enough for you and your gp should help you with that while you wait to see the rumo again.

I think you honestly need clarification on your diagnosis, treatment and blood results..... I so hope it wont be long before you get those cus I think they really could do more for you just now.

I am so sorry you lost your job. That's not easy but its going to get easier once they start to help you more and maybe it will go into remission for a while then. Remissions can last years if your lucky. Mine hasn't but we all have different systems and mine is a bit challenged in other ways as well.

Leaving you a cyber ((( ))) and a hope they will actually help you more soon. Cris x

debbien

Hi All
I did see the rhumatologist who is the consultant i now see however it was he who changed me from celebrex to naproxen and said continue with amitriptaline + paracetamol and the tramadol, this is why i need to go to GP so she can monitor me but in the meantime the bloods consultant requested have come back this is where i say it was high so as that is all i was told i dont know what imlications there are or does it confirm that it is RA. However i am under the impression that i dont see consultant rhumo for 6mths unless that will change once DR has seen me?
I am vauge about it all coz it seems they are all waiting for one or the other to do something including me, bearing in mind i have been waaiting for 2 years i just think it seem long and drawn out with pain and a life on hold not able to plan something because not knowing how i will feel from one day to another, not knowing which bit is meds which bit is the condition?
Thanks for all your possativity keep it coming i feel i am geting more of a result talking to all of you.
talk later
Debbie

dreamdaisy

I think quite a few of us plan from day to day, especially when our arthritises are active (the auto-immune types flare and die down from time to time) and it does make life challenging. You do learn when you can work through stuff and when you can't and when to ease up.

The general pattern of appointments is to see the consultant twice a year and in-between times the rheumatology nurses, but this does vary from region to region. Once you are in the system I hope this will apply to you too. There is not a great deal to be done about the fibro but if RA is confirmed then some other meds will be introduced: if they are come and talk to us, not Mr Google, and we will talk you through them as much as we can. DD

tillytop

Hello Debbie

To echo what the others have said, I would expect that, given the symptoms you describe and the postive RF, your GP would re-refer you to the rheumatologist at the earliest opportunity because, if RA is confirmed, you will probably need to be prescribed disease modifying drugs (DMARDS) in addition to anti-inflamms and painkillers. (The DMARDS are intended to "dampen down" the underlying disease, rather than just dealing with the symptoms as painkillers and anti-inflamms do).

You ask what Rheumatoid factor shows - well RF alone is not sufficient to confirm RA but it can help with diagnosis when taken into consideration along with other symptoms. Rheumatoid arthritis is known as "sero positive" if, along with the other symptoms, you have a positive RF. There are many types of inflammatory arthritis and if you have one of those but don't have RF in your blood, it is known as "sero negative" arthritis. (Apologies if I am repeating something which has already been said).

My advice would be to go back to your GP as soon as you can, ask ask for another rheumatology referral as a matter of urgency.

Finally, please don't apologise - you are not moaning and you are definitely not a hypochondriac!

Thinking of you.

Tilly xxx

debbien

Thank you thank you all
it is all becoming a bit clearer now i have read your posts so i think i need to get on that phone tomorrow for appointment asap with GP will make notes from this so i have the questions to ask although you all seem to be very helpfull and have thrown loads of light on this, makes me wonder why the professionals cant explane more simply so we can understand instead of how i have been thinking which has been very muddled.
thanks again and i will keep in touch
Debbie

debbien

Hi All,
Can anyone tel me does this condition get worse with the change in wheather. The temperature her has been up to 30 and i am only in north yorkshire, i feel like i cant wake up i just want to drink all the time my eys are so sore they have a hasy focus about them and no i dont need to put my glases on it just hapens sometimes, my feet are bunig and if i have to take another step today i don't know how i will do it my body feels like it has been hit by a truck and is so stiff my back is killing me i dont know if to keep it as straight as possible or to curl up in a ball.
Does anyone else get this?
Debbie

suzygirl

Collywobble, I love the cold water bottle for the feet idea, may have to pinch that!!!

Debbie, a lot of us find changes in weather a pain. I hate the heat, the cold and the damp :shock: any change affects my joints, which is annoying

My physio said a cold bottle from the fridge rolled under feet was good, I love that. Freeze gels are nice as well.

I would note all your symptoms to mention to the rheumy, when you see him, it all helps.

Thanks for your lovely post on my thread.