Rhumey Consultation

mumoftwo

Had my latest Rhuematologist appointment today & have been really disheartened & upset by it.
I was diagnosed two years ago with an unknown type of arthritis & Fibromyalgia. Since being diagnosed my medications have been tweeked & adjusted to what they are at the present time. (6 x 500mg of Sulphasalazine, 1 Hydroxy Chloriquine, & 2 x 75mg of Diclophenic per day). I have been having Kenalog injections every 4-5 months to keep on top of the pain & flares. I also have 8 Co Codamol daily & Tramadol when necessary.
I get my bloods checked every fortnight & my latest results showed an ESR of 13 - which is great. The result previous was 33.
Anyway to get to the point of this post - the Rhuemy today was very abrupt when I said to her that I was still in discomfort & feeling alot of new aches & pains that hadn't been there before. She said she couldn't understand it as my ESR was in her opinion excellent. She wasn't interested in previous results only the last one which was a fortnight ago & I might add - from 12 months of fortnightly results the lowest by quite a bit - the next nearest was 18.
The Rheumy gave me the impression I was a fake & a fraud & that the pain etc was all in my head - which I know only too well that it isn't.
I questioneed her on where she could see the treatment going & what outcomes she was hoping for & she was dodged the question!!
She checked hands etc & says there is no swelling - which is true - today, but not every day! & on checking my knees she says i very obviously have Osteo in both of them.
Anyway, I left the appointment wondering exactly what is wrong with me & what the future holds. My meds are still the same, & the Rheumy doesn't seem to beleive I am still suffering.
I really feel at my wits end.

jaspercat

Hi, I can relate to your problems, I was diagnosed with RA 13 years ago, my ESR is under 10 most of the time but I constantly complain of severe pain in my hands/wrists and just recently ankles, my Rheumy just does x-rays and scans and tells me not to worry, perhaps you should have another chat with gp about things, above all else keep telling your Rheumy about things, don't suffer in silence love Jaspercatxx

sharmaine

It doesn't bode well when you hear that the experts are not listening to their patients. If only they could experience the pain and the discomfort of this condition. My hands are weak and they ache but they don't swell. They really need to review their tests. I feel sorry for you. I'm yet to be referred to a specialist by my GP. I think I'll need to be crawling before she refers me. I'm feeling quite miserable these days.

I hope things get better for you. You will have to rehearse a speech prior to your next visit. Say it aloud a few times and get your point across. Write it down. Don't miss a thing. Be assertive and confident.
With regards Sharmie.

mumoftwo wrote:

Had my latest Rhuematologist appointment today & have been really disheartened & upset by it.
I was diagnosed two years ago with an unknown type of arthritis & Fibromyalgia. Since being diagnosed my medications have been tweeked & adjusted to what they are at the present time. (6 x 500mg of Sulphasalazine, 1 Hydroxy Chloriquine, & 2 x 75mg of Diclophenic per day). I have been having Kenalog injections every 4-5 months to keep on top of the pain & flares. I also have 8 Co Codamol daily & Tramadol when necessary.
I get my bloods checked every fortnight & my latest results showed an ESR of 13 - which is great. The result previous was 33.
Anyway to get to the point of this post - the Rhuemy today was very abrupt when I said to her that I was still in discomfort & feeling alot of new aches & pains that hadn't been there before. She said she couldn't understand it as my ESR was in her opinion excellent. She wasn't interested in previous results only the last one which was a fortnight ago & I might add - from 12 months of fortnightly results the lowest by quite a bit - the next nearest was 18.
The Rheumy gave me the impression I was a fake & a fraud & that the pain etc was all in my head - which I know only too well that it isn't.
I questioneed her on where she could see the treatment going & what outcomes she was hoping for & she was dodged the question!!
She checked hands etc & says there is no swelling - which is true - today, but not every day! & on checking my knees she says i very obviously have Osteo in both of them.
Anyway, I left the appointment wondering exactly what is wrong with me & what the future holds. My meds are still the same, & the Rheumy doesn't seem to beleive I am still suffering.
I really feel at my wits end.

elnafinn

Hi mumoftwo

Sorry to hear you are feeling down. Who would not after an appointment like the one you are telling us about. With Fibromyalgia there are 18 classic tender points and no accompanying tissue swelling or inflammation as I understand it and esr is usually normal for Fibro too. So if that is correct then why should she be surprised when you have aches and pain in more places? Pity they cannot exactly diagnose this aggressive arthritis they say you have.

When you see that you do have swelling in your hands for example, get someone to take photos and show them to your rheumy. Do you have a rheumy nurse you can call? If so she may be able to help and discuss with you where you should go from here as y ou are not at all happy with the situation at present.

I do hope things get better for you soon,

Luv
Elna x

rella1965

Hello mumoftwo

Funnily enough I have just came out of my 3rd rheumatologists appt absolutely blazing as he basically told me I was depressed and all my pains etc were an "emotional reaction". Didnt actually realise he was qualified to assess psychiatric cases. Anyway he has asked me to get a second opinion (i.e Get lost), which I am only too glad to do as I think he is an incompentent idiot. Sorry am having rant here on your blog! Sorry, all my tests have not shown any significant changes apart from a present rheumatoid factor, some slight synovial thickening in my toes, low PTH, low calcium and low vitamin D, and he has lost two other tests, which he didnt appear too bothered about, and ventured to say I may have fybromyalgia . My GP however has seen my sausage hands in a flare up so I know I am not mad.

Luckily for both of us there are doctors out there who are less complacent, will listen and have a better manner about them. Take my advice and get a new Rheumy. Sorry bout the rant again. Take care now and dont let them get you down. Rella X

mumoftwo wrote:

Had my latest Rhuematologist appointment today & have been really disheartened & upset by it.
I was diagnosed two years ago with an unknown type of arthritis & Fibromyalgia. Since being diagnosed my medications have been tweeked & adjusted to what they are at the present time. (6 x 500mg of Sulphasalazine, 1 Hydroxy Chloriquine, & 2 x 75mg of Diclophenic per day). I have been having Kenalog injections every 4-5 months to keep on top of the pain & flares. I also have 8 Co Codamol daily & Tramadol when necessary.
I get my bloods checked every fortnight & my latest results showed an ESR of 13 - which is great. The result previous was 33.
Anyway to get to the point of this post - the Rhuemy today was very abrupt when I said to her that I was still in discomfort & feeling alot of new aches & pains that hadn't been there before. She said she couldn't understand it as my ESR was in her opinion excellent. She wasn't interested in previous results only the last one which was a fortnight ago & I might add - from 12 months of fortnightly results the lowest by quite a bit - the next nearest was 18.
The Rheumy gave me the impression I was a fake & a fraud & that the pain etc was all in my head - which I know only too well that it isn't.
I questioneed her on where she could see the treatment going & what outcomes she was hoping for & she was dodged the question!!
She checked hands etc & says there is no swelling - which is true - today, but not every day! & on checking my knees she says i very obviously have Osteo in both of them.
Anyway, I left the appointment wondering exactly what is wrong with me & what the future holds. My meds are still the same, & the Rheumy doesn't seem to beleive I am still suffering.
I really feel at my wits end.

elnafinn

If you are not happy with the way you are being treated I would contact the Patient Advice and Liaison Services (PALS). Your surgery or local hospital will be able to point you in the right direction re telephone numbers or you can google pals and find out your local number that way.

Amongst their services they provide confidential assistance in resolving problems and concerns quickly and will explain the complains procedures and how to get in touch with someone who can help you.

I have today sent a letter, recorded delivery, to my mothers gp and feel victorious since doing this. Why should we be treated in a fashion we definitely do not deserve.

Have a good weekend, I hope to do so!!

Luv
Elna

mumoftwo

Thanks for the replies.

I just feel at a total loss as to what to do next treatment wise. If the consultant thinks I have Fibro then why am I on so many Arthritis based medications (i.e. Sulphasalazine & hydroxy Chloriquine)
But to stick the boot in & say I obviously have Osteo & then fob me off - I just don't get it :x

I was most mad at the way the consultation (which is six months since the last one) centred around my ESR rate of 13 - the lowest it has ever been - & I get my bloods done every two weeks!! I tried explaining that I was feel a particullary good when that sample was taken, & pointed out that the one prior to is was 33 & that I have been feeling achy & sore since - thus, the bloods taken at the appointment would no doubt have increased ESR. But no, she would not listen.

Now, bearing in mind she has just told me I have Osteo in my knees, she then goes on to say I should walk as much as I can "start off at 15 minutes at a time & progress from there" :x

I tried explaining that if I were to so that, not only would I been in severe pain, but I would suffer for days after it, & guess what she said! "No one has ever walked there knees off!!!" What a cheek!!

If only they could be in my shoes for a day & feel what I have to go through doing only the littlest task.

Sorry forthe rant, but I feel a bit better now I've off loaded

milmandy

This is exactly my problem..my pain/soreness etc not showing anything measurable up, the tests don't show what we are feeling it's very frustrating.To imply we are fussing or making it up or it's in our minds is maddening and leaves me feeling abandoned.Maybe we are not all alike in the way our body shows things in these tests.It seems to me that unless the case is a "classic" with classic symptoms it seems imporssible to get anywhere. SO, sympathy to you all. At least this site is a real support and sharing experinces such an encouragement and reassuring that it is not in my mind! Sorry for those whos symptoms are only TOO obvious though too!

barberella

So sorry that you have been treated like this, it's such a shame that so many others seem to have similar experiences. Hope you get a second opinion and maybe get things moving. Good luck. Jo x