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Rheumatology appointment was a disaster

(12 Posts)
HALashley Thu 12-Oct-17 08:55:02

I had my first rheumatology appointment yesterday. Turns out there was no point in going and I still don't have any answers.
It was a short appointment. She asked me a few questions and then told me to lie down as she checked a few of my joints. All my joints were fine and they didn't hurt when she moved them. After that, she just said that she doesn't think that I have an inflammatory disease, and that she doesn't know how to explain my pain. She compared it to someone having chest pain without having a heart attack? She then went on to say that the pain typical with people with fibro is pain that is "every day and all the time and doesn't tend to come and go".
That's really all she said. Regarding one of the medications that I take, Methocarbamol, she said she "definitely wouldn't have prescribed that" for my jerks and spasms, and that there "isn't much point in prescribing me medications that won't work". After that she seemed in a hurry to get me out after she made me cry by asking me what's happened the past year, and then sort of put everything down to my depression, which made me really angry tbh. After saying that i was sent to A&E with severe burning pain everywhere a few months ago, she looked at the wrong flimming admission records. She said the nurse outside would take my blood and send it away for testing.
I left in tears i was so upset. She made me feel like there was nothing wrong with me, that I wasn't going to receive any treatment, and that my symptoms were all in my head.
I just left after that without getting the blood tests done. I couldn't face going in there in tears knowing that having blood tests done for the millionth time this year will show up nothing. She made me feel like I was crazy or that the symptoms were purely psychological after I told her I have depression, and that the pain flares when I'm stressed.
My GP really thinks I have it and is supportive, but I hate that I might nit receive any because I'm not in pain every single minute of every single day.
Thanks for listening lovelies and I hope you're all having a pain free morning xx

PancakesAndMapleSyrup Thu 12-Oct-17 11:16:26

Im so sorry it went that way at your appointment. Unfortunatley Fibro is not well understood yet as a medical issue and some doctors still dont believe it is a real condition. The stress will flare you up massivley so try your utmost to keep that to a minimum. Is there a hydrotherapy pool near you or a spa with a warm pool? That makes such a differenc3 when i use that. Massages also do give you some short term benefit. Are you having a follow up? It will be interesting to see the letter that goes back to your doctor with yiur diagnoses. Also have a look at pacing as you will need to manage this long term and keep the pain kevels to a minimum. Chin up. [Flowers]

HALashley Thu 12-Oct-17 11:58:00

Thanks pancakes. She was so robotic too not once did she smile or even make me feel comfortable. Everything gets blamed on depression when you have it.

I've never tried hydrotherapy so that could be a good idea. I have a follow up with my GP but not the rheumatologist. My GP is lovely but I'm beginning to think I'll never be diagnosed or taken seriously and it's just a bit shitty of the rheumatologist to say that I shouldn't have been prescribed something that does actually help me. Clearly my doctor thought that it would! My GP has a much more open approach to treating my symptoms and if something isn't working for me then he's happy to change it or up the dose. What an arse she was honestly.

etsyetsy Thu 12-Oct-17 12:10:05

Have you looked at EDS?

HALashley Thu 12-Oct-17 14:23:12

Yes but she never tested for it specifically. She also said my joints were fine, and before that she asked me if anyone has ever mentioned that I have "flexible joints". No one has said that to me but then again I don't see how I would be able to demonstrate that casually, and she didn't ask for any demonstrations or anything

PancakesAndMapleSyrup Thu 12-Oct-17 15:57:11

There are drugs that are suppossedly good for fibro. If you are on antidepressants anyway another to try would be duoloxetine which is also specifically prescribed for fibro. There are buprenorphine patches (long release morphine) which i use with a good success rate at controlling the pain. Amongst others. Have they referred you to the pain management dept at your hosp? If not get the GP to do that. What meds have you tried so far? I also find it becomes more difficult as the weather becomes colder as the muscles sieze more easily. Pain in the arse.

HALashley Fri 13-Oct-17 05:53:19

I'm on max dose Sertraline atm but the rheumatologist told me Amitryptiline is used for fibro pain amongst others, but said that I shouldn't be prescribed it since I'm on Sertraline. If they helped with the pain I would be happy to change, but so far the Sertraline has helped my mood quite a lot and I think that is be quite hesitant to change it tbh. I've tried Sertraline, Omeprazole (tummy), Co-Dydramol and Methocarbamol which I'm all on atm. I've not been referred to the pain clinic no

flapinko Fri 13-Oct-17 16:41:12

If you have flexible joints, then you could well have joint hypermobility disorder (on the same spectrum as EDS). My DH has this, and was diagnosed by a rheumatologist after scoring a high Beighton score (even though he doesn't seem to be double-jointed or particularly flexible, he scored very highly). He suffered for years before getting a diagnosis. Sorry if you already know about this, and have discounted it, but just in case you haven't read more here:

flapinko Fri 13-Oct-17 16:42:11

P.S. If this does fit your symptoms, please feel free to PM me and I can tell you more.

PancakesAndMapleSyrup Sun 15-Oct-17 19:31:32

All i can advise is that you get your GP to refer you to your localhosp pain clinic. You will have to manage this long term and they will know far more what to do with you than what the GP is allowed to prescribe etc.

LivingInMidnight Sun 15-Oct-17 20:21:18

Well that sounds useless!

Fwiw I was asked about flexible joints at my first appointment and I said no. It later turned out that what I thought was normal was extremely flexible. I had a similar question about how long I bled for when injured and again turned out to have no idea what was normal. I don't get the point of these questions tbh.

Ask your GP to ring your pharmacist about sertraline and amitriptyline. I took it with an SSRI for a while and was fine.

It's so hit and miss with drs. I've left many appointments in tears.

LivingInMidnight Sun 15-Oct-17 20:27:35

And it can be different every day! angry

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