Please give me hope that some rheumatologists are good!

[Broomesa]

Please somebody tell me that there experiences with there rheumatologists were worthwhile?! Reading through this site it is clear that a lot of people feel so let down with there appointments. I am pinning all my hopes on getting some help and answers on my first appointment, 22 weeks of hoping to be dashed in 1 appointment will kill me 💀! Also if anybody could tell me what to expect from the first appointment that would be great! Thank you!

[Sorebones]

It all depends on what you expect from your appointment. My opinion is if you get a diagnosis you are doing well.

I saw one rheumatologist who would only talk about my painful hands as that was top of the list of symptoms my GP wrote to him about. He told me I could have carpal tunnel syndrome in both hands and referred me for nerve tests! I tried to ask about my Fibro symptoms but he wasn't interested and said that I had been referred for my hands so that's what heads looking at! I saw the letter my GP sent to him and he was being selective in his interpretation to be kind to him.

I ended up seeing a rheumatologist privately. I chose one who had listed fibromyalgia as one of her interests. That appointment was completely different and it took no time for the diagnosis.

The big problem is that there is very little a rheumatologist can do for Fibro. The letter she sent to my GP gave advice on meds, amitrypteline, and I was discharged back into my GPs care. She also believed that my Fibro was caused by lack of sleep! Sure enough, now I sleep better my Fibro symptoms have reduced considerably.

I have no idea if that is of any help to you, but I hope your appointment goes well for you 🐸

[Hidden]

Hello broomesa..please don't expect to get all answers at your first appt. The doctor will take a full medical history,then go over your symptoms,then examine you,possibly take bloods,maybe send you to xray or book scans,he might organise some therapies like physio hydro, occupational therapy groups..only when he has reports back your on your tests will he see you again or contact your g.p. with instruction on how to look after you,order drugs if he sees fit..a long process but being on a list is a good start.

[Broomesa]

I do already expect to have to wait a while for a full diagnosis and wait for scans etc, I just really hope they don't just dismiss my symptoms and send me on my merry way. I think I have a reasonable outlook and don't expect all the answers straight away, I would be happy with them accepting there is something wrong.

I know it probably varies but how long does the first visit usually take?

[Hidden in reply to Broomesa]

Hi again, my first visit was almost an hour which included xrays, scan, and then an MRI scan a week later, I was also privy to nerve conduction studies only because I had a sub arachnoid the year before and the rheumo man wanted to be sure there wasn,t a fall back from that- actually there was!! My neck muscles had caused my head to go into a bad way,(extreme stiffness) my previous rheumo man blamed that on the scarring from ankylosing spondiltis that was In remission!! It makes such a difference seeing a doctor who has interest in fibro/ME/cfs, my first consultant was "one foot in the grave" and was only interested in why a woman has A.S! At the big city hospital where I worked the younger one specialised in fibro/ ME/ CFS and Sjorgrens, he has championed my needs since 2013.. Good Luck don,t take no for an answer!

[Flyby7]

When I had my first appointment it was just talking about what you have go and you might have blood tests and trays so don't worry

[phlebo123]

I hope you get an understanding rheumatologist.

May I suggest that to get the most from your appointment, that you make a list of all your symptoms to take with you or keep a diary to show them.

Also have a firm idea in your mind what you hope to get from the appointment... e.g. diagnosis, medication, treatments (physiotherapy, pain management)

Also it may benefit you to ask a friend or family member to attend the appointment with you, to act as a "second" pair of ears, and I believe doctors seem to listen better if you are accompanied.

Hope it goes well... let us know how you get on xxx

[Hidden in reply to phlebo123]

Very good idea Phlebo....

[BlueMermaid3]

Hello Broomesa

As with anything in life there is good and bad.

I personally have had Fibromyalgia for 30 years and been a member of the forum for 5 years.

In my time on the forum the majority of people who have seen a Rheumatologist have had a very long wait.

They have either been diagnosed or not and then referred back to their GP.

I have not come across many Rheumatologists who will refer you for other therapies.

It is generally a case of being told yes, you have Fibromyalgia, given a leaflet and then sent back to your GP.

Some of our members see their Rheumatologist once per year, but I don't think many do, especially now that the NHS is struggling with under funding.

As far as the appointment will go, the Consultant will ask you a series of questions, do a physical exam and then have a discussion with you. He or she may then send you for some x rays and blood tests.

They will then (generally) prescribe some medication for you if they feel it necessary and it tends to be Amitryptyline that is given.

The appointment will last between half an hour to an hour.

Obviously all of this is a generalisation as each Rheumatologist will have their own way of working.

When you say you are pinning your hopes on getting some help, would you mind me asking what type of help you are looking for?

Wishing you less pain and more peace

Lu x

Admin

[Broomesa in reply to BlueMermaid3]

I just want some help getting it under control. The gp first thought I was suffering with post viral fatigue but when it didn't subside and the symptoms progressed she referred me. I need help balancing medication with life, some make it so hard to work with the drowsiness they cause, like I'm not tired enough. My employer is not supportive at all and I feel if I had a diagnosis, an actual illness to go back to them with then they would have to take heed.

Thanks for your reply x

[BlueMermaid3 in reply to Broomesa]

I very much hope that you get what you need. Generally speaking your GP will help you with medication.

Unfortunately it is very much a matter of trial and error as to what suits you.

I personally have not found any medication at all that makes me feel drowsy, but I do know that I am an exception in that regard.

You may require a referral to a Pain Clinic and a Pain Management Clinic.

Again, both of these referrals can be done by your GP.

Because there is so little understanding of Fibromyalgia and the fact that it is an invisible illness does make life incredibly difficult, as if it is not hard enough already.

Start to keep a pain diary for a week or so. Note down for each day how you are feeling, what sort of level your pain is at and how it is affecting you.

The Pain Chart that most medical professionals work with is:

0 = No pain at all working up to 10 = The worst pain you've ever had.

You don't need to go into huge detail. You can just bullet point each of the three things. Take this with you to your appointment. Your Rheumatologist should find this very useful.

Good luck. I hope it goes well.

Lu xx

[TheAuthor]

Hi Broomesa

I have not seen a Rheumatologist myself but I wanted to wish you all the best of luck with your appointment my friend. Please take care of yourself.

All my hopes and dreams for you

Ken

[Hidden]

It is a long wait to see a rheumatologist. Mine isn't too bad, she certainly did a load of tests before diagnosing me with fibro...so expect lots of blood tests and loads of questions to answer. Good luck xx