Had my appointment with the rheumy today

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Had my appointment with the rheumy today

Postby Dog Lady » Wed Mar 04, 2015 6:48 pm

Saw the Rheumatologist and had a good chat about symptoms, pains etc.
My worst pains today are in my neck and shoulders, left ankle, left wrist and lower back.

Apparently I have 50% of the trigger points but she's decided to send me for x-rays, ultrasound and 10 vials of blood for every lupus and antibody test under the sun. I've had the x-ray and bloods done today so will know about those next week.

Ultrasound will be done in approx 6 weeks then I have to go back for results in 10 wks.

Have to say I'm a little disheartened as I honestly thought I would get to find out today, I've already waited 10 weeks for the rheum appointment and now I have to wait another 10 for results. :(
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Re: Had my appointment with the rheumy today

Postby FluppyPuffy » Thu Mar 05, 2015 12:41 am

I know it's frustrating having to wait when you're desperate for answers to your questions, but it sounds like the rheumy is being very thorough with all the tests, scan and x~rays, which is what you want and need really with something like the myriad of symptoms and things experienced. Hopefully at your next appt, some of those answers will be confirmed for you.
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Re: Had my appointment with the rheumy today

Postby carolad » Thu Mar 05, 2015 11:11 am

That sounds like a very positive appointment :-) As Fluppypuppy says, he needs to rule out other conditions first so it is good he is being very thorough with getting tests done. Mine took forever to come to a conclusion because he didn't do a thorough assessment from the start. On the first appointment, he sent me for blood test for lupus - it came back negative. Then on the second appointment, he examined my lumbar spine and pelvis, realised there was something strange going on so sent me for a lumbar x-ray. That showed I had a lumbar scoliosis. Then on the third appointment, he looked at my thoracic spine, realised there was something strange going on there so sent me for a thoracic x-ray. That showed I had a thoracic scoliosis. So on the FOURTH appointment, he said I had scoliosis (I already knew that), waffled on about non-restorative sleep and told me to pace myself and not push myself too hard...and then discharged me back to my GP!! It was only when I went to my GP that I realised he had given me a diagnosis of fibromyalgia - though even now, I don't know if I really have it or if I do, how much of my pain is related to scoliosis and how much to fibro...

So you are lucky to have seen a good Rheumatologist and not an idiot like mine :roll: You will get some answers in the end :-)
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Re: Had my appointment with the rheumy today

Postby denys » Thu Mar 05, 2015 11:12 am

same sort of reply from me too, :fingerscrossed: for all your blood tests and scan etc.
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Re: Had my appointment with the rheumy today

Postby Dog Lady » Thu May 14, 2015 11:56 pm

Well I've had all my tests done now and I went back to see the Rheum yesterday and I definitely have fibro. They offered me steroid injections and amitryptoline, which I declined. I don't think I'm at that stage yet.

We discussed swimming and acupuncture - both of which work for me currently so now I'm signed back to GP and have a basic idea of what I'm doing...... For now.

It's a relief to finally know and not feel fobbed off.
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Re: Had my appointment with the rheumy today

Postby bandj » Fri May 15, 2015 7:23 pm

Hi,
I'm sorry that you have been definitely diagnosed with fibro but at least now you know what you're up against. When I was diagnosed my first feeling was relief that I wasn't hypochondriac or imagining it. Then I started reading up on fibro and getting as much knowledge on how to take care of myself and deal with the fibro. My biggest difficulty is in pacing myself - I get my limits wrong all the time!
I hope you find what works for you. :-)
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Re: Had my appointment with the rheumy today

Postby Dog Lady » Sat May 30, 2015 11:21 pm

Thank you Bandj, I have been doing exactly the same on google. I did feel relief because until they tell you exactly what's up you do feel like you're imagining it, especially when you have a few good days. I work for myself so I do find it hard to pace myself sometimes and I know when I have done too much.

I have to say my hubby is amazing, he makes sure I take time out and takes me to costa for breakfast on Sunday every week.
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Re: Had my appointment with the rheumy today

Postby Lucylastik » Tue Jun 09, 2015 2:29 pm

I had my appointment with the Rheumy yesterday (8th June).

Why are hospitals so unbearably hot? I don't sleep well and the waiting room was making me fall alseep so when my name was called I didnt hear at first, then he started mumbling and because I have tinnitus I couldn't catch half of what he was saying. Luckily my better half was with me and he filled in the gaps. Then he was sent out because the Dr. wanted to examine me. Great. Now you tell me. I need help undressing because my left hand side is fairly rubbish so he had to get a nurse.

Now I don't have to tell you all out there that we have flare ups. Good days and bad days. So for weeks I haven't been able to make a fist, turn my head properly, sit down without help, bend my knees etc.. I wait three months for the Rheumy and bingo. Everything moves.
I felt such a fool raising my hands, saying "these are usually swollen and immobile", and "I haven't been able to get out of bed for weeks."..
I felt a total fraud.

And then just to makes me feel worse, when I told him I have memory issues, he asked my partner to come back in and started talking past me as if I wasn't there! So I felt invisible as well. I think if I hadnt buckled when he started on the pressure points, I think he would have sent me home not believing a word.

According to the Rheumy I am 95% Fibro. Whatever that means. I had to give another sample (they lost the first one I gave them) and then took 4 vials of blood, then sent me for Xrays on my decrepit shoulder and knee.

I have to go back in a month for the results, I think.

I'm still waiting to hear from the PIP people (I sent my form off in March) and am dreading that as well.
“You can't just turn on creativity like a faucet. You have to be in the right mood.
What mood is that?
Last-minute panic.”

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Re: Had my appointment with the rheumy today

Postby Zia2014 » Tue Jun 09, 2015 4:41 pm

He started talking to your partner instead of you?! :nono: And what even is 95% fibro when it's at home? You either have it or you don't!

Unbelievable. He sounds like an utter tool.
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Re: Had my appointment with the rheumy today

Postby UnderSiege » Tue Jun 09, 2015 9:11 pm

Hi Lucylastik

Just thought I'd put my tuppence worth in here...

Don't ever feel a fraud because your condition decides not to perform for the good doctor or because the day you see an 'expert' just so happens to be a 'better' day for you. I've been told by my mother for ages and just recently by sympathetic staff members at the local council and DWP (believe it or not) to milk it and always, always go by the worst days you have as far as asking for help, medical intervention or benefits goes.

I'm pretty sure everybody else here will agree with that too. You may, like I have in the past feel like a 'fraud' and not want to be somehow marked as lazy or a malingerer but as you, I and anyone else with Fibro or other chronic pain conditions know only too well, good days are a godsend but they are fleeting and not to be relied on... Not even if you have a month of good days, you can't let your guard down and if you make the people who count think that you're ok today, they'll get it in their heads that you're ok all the time or that your issues are no big deal (I myself only just put in the PIP claim I should've done years ago but didn't on 'principle'...)

Nobody can really truly understand or know what we go through. What we fear... but we are in it for the long haul and thus are the true experts on our condition.
I believe it was Shakespeare who wrote "Anybody can master a pain but he who has it"
That is the main difficulty faced by sufferers of the 'invisible illness'; convincing the doubters.

Anyway, I've just had my first meet with the local Fibro support group, which went really well, and I'm tired now and need my dinner.

I hope everything goes well for you from here on in and have a good evening.
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Re: Had my appointment with the rheumy today

Postby Lucylastik » Mon Jul 13, 2015 3:54 pm

UnderSiege wrote:Nobody can really truly understand or know what we go through. What we fear...


Haha,well that made me cry, but then I cry at the drop of a hat just lately. :)

Thank you, both of you for your words of support and yes Zia, he was a bit of a tool.

Speaking of which, I had a letter from the hospital yesterday with my results. All 'normal'. Even the X-rays. He even said, and I quote:
"Your urate level is mildly elevated but I do not think this is responsible for your aches and pains".

Aches and pains. Jesus wept.

It's nothing when you boil it down to that, is it, doctor? So how about the...

Exhaustion. Waking up tired. Loss of mobility. Leg/knee ache. Upper arm ache (biceps)
Joint stiffness, swelling and pain. Mainly left side. Shoulder, collarbone, wrist, hip, knees.
Bone pain, feelings of fragility as if they are about to break or get stuck/locked in place.
Weight gain. Four stones in 2 years.
Insomnia, restless sleep. Woken by pain.
Loss of appetite (despite the weight gain)
Acute heartburn, acid reflux.
Muscle cramping. Stiffness and pain (also spasms, restless leg, muscle 'clamp')
Backache, sciatica flares when walking, frozen shoulder.
IBS, constipation and diarheoa (either or, nothing in between).
Tinnitus (constant). Loss of balance. 'Clumsiness' knocking into things, slipping in shower. Falling up steps.
Headaches, blurred vision. Eyesight failure in Dec 2014. Had to order glasses for first time. Dizzy spells when turning over.
Constantly cold, even in summer.
Forgetfulness. Heightened sensitivity to pain and cold. Loss of grip.
Irritability to light and sound.Cranky, emotional, mood swings.
Anxiety, panic attacks, palpitations.
Loss of libido.
Depression, agoraphobia.


How can I convince this consultant when he just invalidates everything into simple 'aches and pains' and probably doesn't believe that either because the tests are 'normal'?
“You can't just turn on creativity like a faucet. You have to be in the right mood.
What mood is that?
Last-minute panic.”

― Calvin & Hobbes.
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