What can I do?

magenta

Hi all,

I'm at my wit's end tonight. I'm beginning to think that the drs I've seen recently think I'm imagining all my pain. It can't all be down to the fibro.

I now have no rheumy to go to-she discharged me, more of a 'nothing wrong with you-go away'. I feel that my GP will be unable to do anything more for me as I've been referred to a rheumy, been discharged-that's it!

I'm waiting to see a podiatrist but I'm basically going to see if he/she will do xrays and help me with my pain. Both knees are very sore, stiff and swollen-particularly on the insides of knee. My ankles feel as if I've broken bones in them and my feet are so painful. Now my hips are causing me all sorts of pain. I don't know how much more of this pain I can take. It's getting worse. I can still climb stairs but slowly and it's very painful. I'm counting down the minutes for when I can take the painkillers but I may as well be taking sweets as they don't really help.

What can I do, other than going private? I really do feel quite tearful about it all. I've had enough of being told 'you're RF is negative' or that 'you're too young, you can't have arthritis'.

Magenta x

mig

Hi Magenta,Sorry you are suffering and cant do any thing to help you but i will be thinking good thoughts for you.Mig

valval

hi ask your gp for second opinion if you have only seen one rhumy you should be able to see another one i wish could help you more i was scared stiff they would tell me it was all in my mind but thankfull rhummy was great bless him still half afraid of him but getting there good luck val

tjt6768

Hi Magenta..
I'm really sorry that you are going through this..
May I ask, have you had any diagnosis at all before? Sorry if I can't remember.
I've been told for many years.. You're too going blah blah.. It's horrible..
If I was you I would ask for another rheumy. A second opinion. You are within your rights.

We are all around so at least you know you're not on your own.

You must go back to your GP though. Tell them exactly how you feel.

I wish you the very best.

magenta

Hiya,

I was diagnosed 12 yrs ago with sero-neg arthritis but that doesn't seem to get mentioned anymore, even though it's in my notes. I've got OA already in my jaw, big toes and neck. Also been told by my last rheumy that I've got the start of OA in hands. Got fibro too, diagnosed about 3yrs ago.

I've seen a good few rheumys now but they always, always refer back to me having a negative RF, therefore I don't have RA.

Magenta x

tjt6768

I was under the impression that sero neg is a type of rheumatoid. (I might be wrong?) That's what I've been diagnosed with in my hands, wrists, elbows and knees. I'm still under the rhuematology dept.
Bit strange.. I really hope you get some answers.
Isn't it bad enough that we have to suffer the things we do without being messed around by the ones supposed to be helping us?

I wish you the very best of luck.

elnafinn

Hi Magenta

I keep reading that the rheumatoid factor is only one small part of the approach toward classifying a patient as having rheumatoid arthritis.

http://www.healthcentral.com/rheumatoid-arthritis/c/question/31661/28157

It would appear that there are many people out there struggling because they do not have the RF and gps, rheumy's will not listen and take on board what the patient is telling them.

Keep on, keeping on, Magenta, upsetting though it is, I am sure you will eventualy find someone who will listen and take you under their wing.

Elna x

magenta

Hi again,

Thanks everyone for your kind words.

Tony, I too thought that sero-neg was a type of rheumatoid arthritis. Every time I go to my GPs to moan about my pains, they do bloods, even though I keep telling them I don't have a positive RF. It seems that up here in Glasgow, the rheumys don't seem to do anything unless I have RF in my blood. Now I have the fibro diagnosis, which I do believe I have, they use this as an answer to all my pains.

Dear Elna,
How's things with you? Hope your Mum is well these days?
I've had 20yrs of trying to get answers-don't think I've got much more energy left to keep on at them!

Thanks again,

Magenta xx

tjt6768

They do like to take the easy route sometimes don't they :x Makes me so angry.
I was fairly lucky as I got the diagnosis quite quickly. Even with the negative bloods, and I have only recently had swollen joints.. Mainly fingers and knees. And that's not that bad to the eye.. Can certainly feel it though
Anyway, I wish you the very best..
Don't let the buggers grind you down.. You've always got us motley crew on your side, lol..

magenta

Hi again Tony,

It's only now that I too have visible swelling. I have it in my knees, hands, elbows and ankles but they never look at them!

Think drs could all do with a refresher course in medicine.

Thanks for your support,

Magenta x

elnafinn

Dear Magenta

How kind and sweet of you to remember the anguish I went through with my mum. She finally got over everything that was thrown at her, is fiercely independent again and looks after herself in her bungalow with help from a friend whom she pays to do some shopping and a little cleaning for her. Cleaning has never been one of my mum's top priorities, there are far to many, much more interesting things in life to do!! She used to pay me to do the cleaning when I first moved away from home many moons ago She has had a gardener for years and now he keeps the whole garden in order for her. She ventures out shopping using her stroller and goes to the library and so on. She is 88 years old now and is quite remarkable considering all she went through.

If you get on with your gp, Magenta, I would go back to him and show him the swellings in your ankles etc or take photos incase it goes down. Why is the RF being present, so damn important, especially to the rheumy's where you live? :roll: Would your gp send you for xrays? Let's hope the podiatrist can help you with your feet.

Thank you for asking about me too. I struggle some days and have just had an echocardiogram and a BP monitor fitted for 24 hours as I faint every so often and am being treated for high BP but sometimes it goes really low especially after a faint. Gp should call me Monday with the results. Had a foot and spinal op last year, have had a few falls, the last one being on Wednesday so feeling a little fragile, but there you go. Most days are good!

Do let us know how you get on, it is good to talk

Gentle hugs
Elna x

bubbadog

Hi Magenta, Don't ever give up! It took me 13yrs to get a diagnosis. I was pushed from pilar to post, eventually it was because a physio I had been sent to (god knows why I couldn't even do any of the exercises she did with me!) gave me the name of a new orthopod and my G.P ( who I had also changed to and she had started from a blank page and was a breath of fresh air!) sent me to see him and after different scans and a bone density scan I was diagnosised with Osteoporosis and Fibromylagia and then the long road started!! So Magenta don't ever give up, if your not happy with what your G.P is doing to help you change G.P and see if they will start with a blank piece of paper and start from scratch to help you.

magenta

Hi Elna,

I'm very glad to hear your Mum is doing really well-I'm with her on the cleaning, except all I want to do is sleep I so hope you get some answers too with regards your echocardiogram. Falling and fainting isn't good. My GP is very helpful and sympathetic but it seems his hands are tied when it comes to doing other stuff. He's trying to chase my pain clinic appointment at the moment-now been 3yrs waiting! He's seen my feet and ankles swollen, even when they weren't that bad, he felt it was vital that I was referred to a rheumy. I'll wait to see what happens at the podiatry appt. Thanks for your help x

Hi Bubbadog,

I'm really confused just now with it all. My GP is very understanding, it's the hospital drs that are the problem. I'm still 'too young' and because I'm working, they think that I must be ok pain wise. They don't understand that I need to work and the pain is indescribable at times. Every new rheumy I've seen treats me with a blank page-they think that they're going to be the one that will be able to diagnose me. I then don't fit their idea of a patient with arthritis. I don't know how many times I can go through another rejection. I'm sick of getting my hopes up, being promised that they'll do something just for them to tell me to go away, that there's nothing they can do for me. I'll see what the podiatrist does-if they're any kind of a dr, they should be getting xrays done on my feet and ankles at the very least. Thanks for your kind words x

Magenta xx

tjt6768

You are more than welcome, that's what we are here for... To support each other.
Not many folks in the 'real' world do eh?

magenta

Thanks Tony,

You're so right-sometimes I want to scream when people say to me that I'm too young or that they've got a sore knee etc.. and it'll get better, just take some paracetamol!

Thanks for listening to my woes,

Magenta x

roses1

Hi Magenta,

Sounds like you have the same problems as i do!

makes you want to scream!!!!!

once they diagnose fibro it doesnt matter what else you have, all is ignored and its down to fibro!!!
I have seen diff rheumies they just dont seem to care. I had other problems before the fibro kicked in and I can tell the difference between my pains, i have explained all this they just dont want to know!

btw i'm not in Glasgow either and it seems that the opinions are the same here!

Hope you get some help soon.

Rose x

magenta

Hi Rose,

I'm sorry it's the same for you too. I agree with you about how we know our bodies and can tell the difference in our pains. I knew when my jaw was bad and pushed for it to get xrayed, same with my neck. Everyone was convinced it was the fibro. Turned out to be OA in jaw and neck plus a bulging disc. I'm so convinced about my pains not all down to the fibro but I feel I'm just talking to a brick wall!

Hope YOU can get some help too

Magenta x

Colin1

Hello Magenta
Sorry you so unwell and feeling down. I understand just how you feel been there so many times. Such lack of understanding from GPs but I’d have thought the Rheumy would try more. Was your Rheumy young or old, I find the younger doctors have more sympathy and understanding of FM whilst the older ones pass it off as though it where some sort of Psychosomatic illness. Some just don’t seem to understand what FM suffers go through. You just have to keep on at the GP. As for being to young what a load of crap you should point them at our young people’s forum. Wish I had the magic wand for you but the best I can do at the moment is send you a hug. You have been so kind and supportive to others over the years. I do hope you feel better soon. Have you read about the gateways in your body or the receptors in your brain apparently some tablets although labeled anti depressants do work and help reduce the pain by cutting of the bit of your brain that tells you your in pain. I tried these for some time and I did get some relief but due to other commitments had to give them up. At the moment my RA and PA drugs seem to have me under control but the FM still gives me lots of trouble. The tablets I took where Citilopram
Hope I have been able to help in some way. Do take care I know its difficult for you at the moment. There is light at the end of the tunnel it just takes us so long to get there. All for the want of a decent GP who can at least try to understand. You know when you suffer an illness like FM it doHello Magenta
Sorry you so unwell and feeling down. I understand just how you feel been there so many times. Such lack of understanding from GPs but I’d have thought the Rheumy would try more. Was your Rheumy young or old, I find the younger doctors have more sympathy and understanding of FM whilst the older ones pass it off as though it where some sort of Psychosomatic illness. Some just don’t seem to understand what FM suffers go through. You just have to keep on at the GP. As for being to young what a load of crap you should point them at our young people’s forum. Wish I had the magic wand for you but the best I can do at the moment is send you a hug. You have been so kind and supportive to others over the years. I do hope you feel better soon. Have you read about the gateways in your body or the receptors in your brain apparently some tablets although labeled anti depressants do work and help reduce the pain by cutting of the bit of your brain that tells you your in pain. I tried these for some time and I did get some relief but due to other commitments had to give them up. At the moment my RA and PA drugs seem to have me under control but the FM still gives me lots of trouble. The tablets I took where Citilopram
Hope I have been able to help in some way. Do take care I know its difficult for you at the moment. There is light at the end of the tunnel it just takes us so long to get there. All for the want of a decent GP who can at least try to understand. It doesn’t seem to matter what goes wrong with you they blame the FM one moment they just brush you off like it doesn’t exist or its all in your mind, the next they blame it for other things they are unable to diagnose when they should be sending you to see a specialist. I shouted at my GP telling him I had a life outside hospitals and his surgery and did he think I enjoy being in this situation. But its a bit of a catch 22 because he then said I am suffering with depression. I told him where to go didn’t do my health any good but I sure felt better telling him he was an **** whole. Now he is so pleasant to me I can’t believe the change My wife also told him what she thought about the way he treated me.
Colin

dreamdaisy

I empathise Magenta, the first rheumatologist I saw (I was referred by orthopaedics) sent me straight back to orthopaedics, claiming I couldn't be in his gang - and that decision was based on nothing but his opinion. The second rheumatologist was equally blunt but then had to concede that when all the swelling re-started it was probably some form of inflammatory arthritis, but it was a grudging diagnosis to say the least. Luckily my high ESR and CRP helped on that occasion! He may well have been an absolute wow at medical school but the money spent on the charm school bit was utterly wasted.

You have to keep fighting on, there is (unfortunately) no other way. There is obviously more than just OA and fibro going on with you and sero-negative forms of this disease exist, so why they won't admit that is beyond me. Ask to see another rheumatologist and don't take no for an answer. A private consultation may be a quicker route but I don't know about cost: if you do go down that road make sure you aren't paying to see the one who's already told you you ain't his pigeon! DD

magenta

Hi Colin,

You're always so nice and understanding when I have a problem. You have helped me by realising that I should be going back to my GP and fighting this. I woke this morning with my left knee still swollen at the inside and so very stiff. I could hardly move my ankles and my feet, particularly my toes are very sore. I had to take my painkillers and sit in pain for an hour before I could even contemplate going for a shower.Any info you read says these symptoms can be arthritis. I KNOW it's more than the fibro. I've also had the 'you're depressed' crap said to me-partly because I usually burst into tears when I'm told it's only the fibro. I've also been asked if I self-harm!!! That Dr nearly felt what it would be like to be harmed
I'm on pregabalin and amytriptilline and they do help but this pain is different-my knee now hurts when I walk-it's a sharp pain. I go to bed every night in pain and hoping, tomorrow, will be different but it's not. If they keep saying it's the fibro then why do they not refer me to a fibro specialist? That'll be another question for my GP. I'll let you know how I get on,

Thanks for taking the time to talk to me and make me see sense,

Magenta xx

magenta

Hi DD,

Thank you for replying. I see you think you may have a Bakers cyst? You know you have to go to your GP and get it looked at.

I always take a couple of days after a rejection, to work it all out in my head. I will go back to my GP but I know I'll cry-again. I'm sure it's in my notes that I'm a looney!

I'll let you know how I get on,

Thanks,

MAgenta xx

dreamdaisy

I know that now hon, thanks to this wonderful place, and I will but not until Tuesday - there's no point ringing on a Monday as the phones are usually jammed. Keep your spirits up as best you can, keep fighting as best you can, keep as optomistic as best you can and I am sure you will get a proper diagnosis in the end. It's unfair that some of us have to fight so hard but don't let them grind you down. Take care. DD