After my first visit to the rheumatologist...

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After my first visit to the rheumatologist...

Postby Itsnotinmyhead » Wed Mar 26, 2014 3:20 pm

I had the long awaited visit to the rheumatologist this morning. I can honestly say that I was so scared he would just dismiss me.
He asked me lots of questions as to now I feel and how long I have had been feeling rotten, and I replied with, you know the sort of thing - exhausted, pain everywhere, unable to get a decent nights sleep, cramps, IBS, headaches, dizziness, tripping up, pins and needles - and the list goes on and on.

He discussed my previous blood tests, CT and MRI scans, two operations on my neck, and neurosurgeon reports with me, and then tested me for tender points and felt and squeezed my hands, feet and heels.

His diagnosis is primary Fibromyalgia, and secondary spinal osteoarthritis, widespread neuropathic nerve damage, and the onset of inflammatory arthritis (though my bloods are ok) He also said he agreed with the recent consultant diagnosis of Achilles Tendonitis in both heels and Carpel Tunnel in both wrists.

So, after five years of constantly asking someone to listen, the rheumatologist gave me something to listen to!

He explained that both neck operations had still been necessary to stabilise my neck (5 damaged vertebrae with a now C3-7 fusion)
He confirmed my wrists need operations.

He wants me to try a new opiate, can't remember the name, to help with the neuropathic nerve pain. He is advising my GP about it.
He explained that I have quite a complex set of pains to deal with and that Fibromyalgia itself is difficult enough in itself, and is referring me to the pain clinic.

Funny thing is, I really believed he was going to tell me it was all in my head, and to get a life. I didn't come onto the forum very often in case I was told there wasn't anything wrong with me. I have never been told that, but in have this deep seated fear no one will believe me. Comes from my childhood, but that's another story!

So, how do I feel?
Still in lots of pain, exhausted, but there is a sense of relief that I have a diagnosis, or various ones.
Relief that I can come here and know that it's okay to say how dreadful I feel, or that I had a good day.

The rheumatologist was really nice. I didn't have to tell him the tender spots were painful, I nearly jumped off the bed! I took notes with me, but he didn't ask to see them. But they were still helpful for me to refer to when he was asking questions.

Next step, discussing things with the family. Just wanted to come here first. And also have a good cry. Feel very emotional. And :needhug:
“I've learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.”
― Maya Angelou
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Re: After my first visit to the rheumatologist...

Postby Dippy Deb » Wed Mar 26, 2014 3:32 pm

I'm so pleased you have answers. But please go steady in the next few days. Its great to get answers but now we have to find away to deal with what's happening to our bodies. I was so happy when I finally found out, but then I felt a loss as to what's going to happen now.I'm sending you gentle hugs and support. This site is great for getting answers to any questions you may have. You take care xx
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Re: After my first visit to the rheumatologist...

Postby littlemac0191 » Wed Mar 26, 2014 3:43 pm

I know exactly how you feel after numerous tests and finally thinking and neally believing that it was all in my head, someone finally listening and giving a diagnosis. I felt as if a huge weight had been lisfted. This is a start of another long journey for you. good luck
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Re: After my first visit to the rheumatologist...

Postby Gill76 » Wed Mar 26, 2014 3:49 pm

I know just how you feel. It was such a relief when I first saw my Rheumatologist, and she listened to me. I hated getting the diagnosis of fibro, but at least I knew I wasn't just going crazy!

Lots of gentle :hugs: :hugs: :hugs:
Diagnosed HMS - 1996 ~ Diagnosed Fibro - April 2011
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Re: After my first visit to the rheumatologist...

Postby whoami » Wed Mar 26, 2014 4:17 pm

This sounds ridiculous but...........
..............................I am so very happy for you that you were told that you have a condition that will leave you in pain for the rest of your life or until there is a cure!!!

I like others can completely relate to that feeling you get when told you have a genuine illness. It is such a relief.
When I was diagnosed the Dr, who also has fibro said.....I have good news and bad. Good news, I know what is wrong with you. Bad news, you are going to live a painfully long life. I was so happy I cried. I had been heard and my pain validated.

The thing now is to work with your Dr, find a treatment, it may take a while but you will find a treatment that will make your life reasonably comfortable. Not perfect, not without pain and other symptoms but a life where you feel at peace.

Welcome to life with fibro! we can help each other by being, first good listeners to one another and then a friend with a hand to hold on those dark days. Never feel that you can't say to us exactly how you feel. x
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Expect the worst in life you won't be disapointed and you'll be prepared!
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Re: After my first visit to the rheumatologist...

Postby praline » Wed Mar 26, 2014 4:53 pm

Congrats on getting some answers and secondly some well deserved hugs!!

I am still waiting to see the rheumy (taking forever...) but can completely understand your 'relief' -it really is not in your head! I thought exactly the same until my podiatrist insisted on getting a pain team referral after commenting on if I was in pain anywhere else after making me walk up and down the corridor like an old lady (I'm 31 btw!)- erm yeah... !!l, which gave the working diagnosis of fibro and it literally was like a weight being lifted but as dippy deb says, after you might also feel some grief, I understand its perfectly normal to feel this way - I went from being completely rundown to ah ha yay we have an answer, then reality hit like a brick wall when I realised things might never actually get better but these feelings have settled fortunately mostly now - I really can't do much other than look after myself a bit better and wait to see what happens next!
x
Waiting for official diagnosis but it all makes sense now..its not in my head..it was always real..
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Re: After my first visit to the rheumatologist...

Postby denys » Wed Mar 26, 2014 10:22 pm

:hugs: :hugs: :hugs: :hugs: :hugs: :hugs: :hugs: take a few days to get your head around it and then talk to your family :-D :-D :-D
Denys

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Re: After my first visit to the rheumatologist...

Postby FluppyPuffy » Wed Mar 26, 2014 11:27 pm

Glad to hear you've finally got some of those answers you've been looking for :bear-dancing: :bear-dancing: :bear-dancing:

How you're feeling at the moment is pretty typical of what follows when you have been given your dx. Whilst there is the initial relief of knowing that there is a name for all you've been experiencing, this is very quickly swamped by the realisation and enormity of FM.

As Denys has said, give yourself some time to let things start to sink in and make a little more sense to you. Then, when you feel a little more settled with things, start telling those that need and want to know about what you have told. Trying before things make a little more sense can sometimes leave you feeling even more flustered and :crazy: :crazy: :crazy: as you may not be in a position to deal with what they may ask or say to you.

Things will start to become a little lighter and brighter as each day passes, so just try and take things as they come and you will find your way there :cow-wave: :cow-wave: :cow-wave:
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Re: After my first visit to the rheumatologist...

Postby beryl23 » Thu Mar 27, 2014 10:44 am

aww thats so good to hear that you have had good results from the rheumatologist. My experience was totally different and I don't think I could face going to another one. Please take it steady and hopefully you will manage your illness easier. My consultant made his mind up about me after carrying my notes which I suppose are quite heavy after having tests etc. and other procedures in my lifetime. He was so ignorant towards me after looking me up and down, and assessing that I needed to loose at least 3 stone in weight, and I cannot tell you now what he was talking about in my consultation. these are some things he said to me...
1. If I wanted to kill myself, I wouldn't sit in his room, I would go on a car park.
2, If that didn't work, then I would go on the main road.
3, and if that got me nowhere, I would have to go to sit on the M6, and that would do the job.

He also looked at my knee but not touching it, and decided, that I did not need the knee replacement that I had had previously 5 months before. How he gathered that information I do not know.

He told me that although I was in pain all over, and I had a large bulge on my spine and problems with my vertabraes in my back, also scolliosis, that I was to go out and dig the garden, but If I found myself in his room again, with me saying that from waist down I was incontinent, and I was not that bad, I would be turfed out of his room. My granddaughter who came with me was astounded at his words, and I am now too frightened to go to see anyone again...thankyou for listening xxx
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