Confused, diasppointed, frustrated and giving up : (

suzygirl

Ok, went to my rheumy appt yesterday. As I suspected it was junior doctors on and I asked to see a consultant, the nurse said she would try. A consultant agreed, but it was one I have never seen before, so a new face.

He reviewed my notes, asked me what was happening, examined me, said he could see no signs of arthritis, could not see why I was on pred, to reduce it and that he thought I was in a lot of pain and maybe had a pain syndrome secondary or primary.

Confused I asked if he meant fibro, he hadn't applied tender points??? He said maybe, secondary as lots of people had it and that caused memory loss and pain.

So I asked what he thought my diagnosis should be, he agreed on the sjorgens, and probable mild lupus, but no arthritis and didnt need pred. However he did give me a leaflet on azathiaprione and told me to read it and he woud check bloods to see if I was suitable to start it.

He said he would x ray hands and feet as I requested an x ray of my feet. He forgot to do that though, and I forgot to remind him.

He said I was a complicated case, my back issues with the disks werr clearly causing problems. Although I have had sacrolitis in the past and I am sure it has come back. My back is killing me today where he poked and prodded. Its so stiff and painful. My joints that have arthritis in are complaining loudly at the way he manhandled them.

He never looked at my feet or raynauds either. He said I hadnt got positivea ntibodies, when I corrected him he said it didntmean anything. I went through all my symptoms and he said they are just symptoms and odnt mean anything.

I tried to get all my history across to him, tendonitis and bursitis, rashes, swellings etc.

I feel as though he had judged me the second I walked in as a hypochondriac who was healthy and wanted meds and medical attention. They skim your notes but don't pick up all the history and I forget half of what has happened.

Would a doc give you a leaflet for a med he has no intention of starting you on??? I have got a blood test sheet but canrt see the test for starting AZA on it?? They dont treat fibro with that med, so I am confused. Was he just fobbing me off or is he really going to put me on that instead of the sulfa??

I am going crazy, I am tempted to stop all meds and see where that gets me. I don't want to see any more docs, I am so sick of it all. I am unable to work due to my illness and its many debilitating symptoms, I want proper meds so I can get my life back.

My hubby says ignore the doc it was a first appt he doesn't know and talked rubbish. He doesnt see why I am so upset. He says you are genuinely ill, need the meds, the steroids make a massive difference to you, don't stop them.

Sorry this is so long, I am just going out of my mind with it all, and dont know what to do.

julie47

Hi SG

I really don't know what to say except I am so very sorry that your appointment didn't go too well.

Hopefully the consultant will be true to his word and try you on the new med when your blood results return.

I know how dishearted and angry you must feel but they will get your meds right eventually and then you will start to feel better.

Sorry I am not much help, so I will do what I do best
((((((((((((((((())))))))))))))))))))))) send hugs and wish you well

Love Juliepf x

barbara12

Oh my love it doesn't help when we have to see different doctors....I hate it when they start looking through notes while you wait...I know they cant know everything about everybody...but if only they realised that all some of us want is a proper diagnosis,
Could you have a word with your GP and see what they say, I just wish I could help more, and please dont apologise for the rant you really needed that.
Another thing you could try is to phone his secretary, I have done this on more than one occasion, and it has been very helpful has they have all the notes and can tell you what the consultant has said in your notes.
wishing you well with everything xx

salamander

Why don't you write to the consultant for clarification?

valval

i had such a positive app i feel for you i always see same bloke think he only one we got lol but getting to know him he often says have you thought about the meds we discussed(has not with either bless him) but do trust him and he is doing a lot to help but he does not do xrays or mir scans from what others have said val

suzygirl

The whole thing is driving me crazy. I have just gone to look at the original letters from 2 years ago when I got a private consultation. he reviewed all my NHS letters and confirmed the findings of lupus and inflammatory arthritis, and started me on treatment.

The doc yesterday agreed about the sjorgens, so I am not going mad, they have said I have all these things, they just seem to be inconsistent about it.

I like certainty and black and white and you don't get it in this situation. I shall have to think it over.

Anyone got fibromyalgia? I may start a seperate thread. I accept I may have it, but looking at the symptoms part from the foggy brain, I don't suffer with the rest?? He didnt test pressure points, they have done before and I am not tender. The pain clinic did this, they were the ones who advised upping the MST.

Confusing or what????? :shock:

valval

nothing about arther is straight foward is it so confusing my rhummy keeps saying are you sure no one in your family has artheritis well would have told him it they did lol

tillytop

Oh Suzy I am so very sorry that you are still no further forward. Don't know what I can say except that I really do understand because I have been there in terms of being terribly ill with multiple unexplained symptoms and no way to move things forward. I too felt that I was labelled a hypochondriac and that that label meant that my symptoms were not given the consideration they deserved. It is a horrible, horrible situation to be in and is not helped by the fact that specialists these days are so very specialised that they seem unable to deal with multiple symptoms which cannot easily be categorised.

I have been racking my brain to see if I can think of anything positive to suggest and the only thing I can come up with is this: Have you thought about perhaps writiing to this consultant (copied to your GP) listing, with details, every single symptom you have been having, together with details of the blood tests you mention and the copy letters from the private consultation. If you explained that you were writing because you know that your situation is complicated and that you felt you were unable to put across all the details at your appointment. Maybe, just maybe, if the docs saw everything written down in black and white, they would see how serious things really are.

Thinking of you loads.

Love and ((()))s

Tillyxxx

skezier

Oh Suzy that’s no good at all!

I am sorry your head must be all over the place following than one. I don't have fibro cus I won’t have it but the best nurse who does my drip went to a conference by a rumo nurse who really knows her stuff. She had written a book and well it’s a nurse’s guide to the arthritis’s.....

She let me read it and I did read the fibro section as well.... it had the pressure point things on a diagram... (I only have 6 of them ) I can't remember where the others were but the ones I do have are about 4 fing3rs up from the elbows both sides, half way along the collar bones both sides and also the front of the collar bones, again both sides. Then half way down the ribs, again both sides, then in the sides of the knees.

I don't have the others cus I didn't push them and can't remember where they were..... I might have dropped the metal block and not poked to see..... I just won’t have fibro for some reason.

It’s covered by the pregabalin anyway. They tend to use that this way for fibro as well as arthritic pain. The rumo said he would only use the pregabs and the trams for the fibro and as I was all ready on them it was covered.

Maybe they could help you as well? I know they can mess with your head but in my case that was never too bad and I would forgive them anything as they help me so much.

What to do about the diagnosis thing..... I think Tilly and Sal are right and a bit of clarification could be good..... But I also wonder if your gp can help to explain why the 2 rumos are saying different things.

Suzy could you se the other guy again maybe? The drug thing does need sorting out cus you clearly need help.

The raynaurds thing... I know mine is secondary but as I get older it’s getting more evident even though the acro over shadows it. Your gp might be able to proscribe something to help with that>? I take losartan, which in my case are not too effective hence the drip being reinstated but Suzy the iloprose does work and some only have to have it once a year.

I can't think what else I can say that might help but am thinking of you and leaving you a ((((( ))))) and so many hopes the gp will be able to help you. Hang in there. Love Cris xx

suzygirl

Thanks all for being so supportive and taking the time to answe whne you all have so much going on yourselves. It is so much appreciated.

I think the problem is I have had so many symptoms affecting nearly every part of my body.

Tilly, I like your idea of writing a letter, I may well do that.

Cris, I would love to go back for a private consultation, unfortunately funds just will not permit.

I have tried raynauds meds, nifedipine and I couldnt tolerate, gave me migraines, so am reluctant to try another one. :oops: I know, I hate side effects, you do well with the iloprost Cris. Not sure mine os bad enough for that, unless I get another ulcer. I take it a good sign, I can actually feel the feet are cold, usually they are totally numb.

I am already on gabapentin and take amitryptyline to sleep and I beleive they are fibro meds anyway. I dont have the tender points, but I have found lately certain areas such as my calves are very sensitive. Also the brain fog was made worse by lack of sleep.

I suppose really, I just don't want any of it and if I have to deal withit want certainty and a cast iron diagnosis and meds. Shame it doesnt work like that

I am sorry to take up everyones time, rambling on about my diagnosis when you are all so poorly, but I just need a little help with it all.

Thank you all so much x

julie47

Hi SG

I don't know much about fibro only what my friend tells me of her symptoms. I know she takes amitryptyline but I think that is all atm.
She does complain of fuzzy head and constant fatigue, her main pain is in her legs. Calves, knees (at the sides, the fatty bit) and the inside of her thights. She says they are all very tender to touch. She also complains about her neck (which perhaps could be another problem)

I know my info isnt much to go on but I hope it helps.

I hope you get the help you need soon
Take care
Love & Hugs (((((()))))))
Juliepf x

suzygirl

Thanks julie, thats interesting to hear. I know that lots of people have secondary fibro.

When I was first going through the diagnostic process I asked if it could be ME/CFS or fibro and was told categorically no due to my abnormal blood results and differing symptoms. So it is all confusing now.

I will make an appt to speak to the gp. I may leave it till after the hols as it gets so busy at this time of year and seems unfair to bother them with something so trivial.

Thanks again everyone.

dreamdaisy

You poor thing, I do empathise with the frustration. I think one of the major problems we all face is that we are at the mercy of personal opinions, you could give five rheumatologists the same set of symptoms and then receive up to five different diagnoses. I don't, however, think that your current situation is trivial. Christmas or not, go to your GP (if they know you pretty well and are usually helpful) and explain how let down you are feeling. OK there might not be anything medically to be gained from this but you never know to where it could lead. Take things as easy as you can over the next couple of days and I hope you are feeling brighter soon. DD

suzygirl

Thanks DD, your sensible approach is just what I need!!!!!

Spoke to my mom this afternoon who said that a consultant wouldn't give you a leaflet on a med he had no intention of starting you on. So we shall see.

charlielou86

hi Suzy

so sorry to hear about this. Unfortunately it seems to happen to often and you end up between a rock and a hard place. Same for me at the mo so completly understand how you must be feeling. Try and stay positive sweetheart, and if you want to chat then just message me. xxx

suzygirl

Thanks Charlielou