Looking for a neurologist who understands Fibro & advice about Guys Fibro Rheum team & specialist clinic

[AmySholay]

I've been diagnosed with Fibromyalgia and have heard Guy's hospital runs a Fibro specialist clinic. Has anyone seen either Dr Toby Garrood or Dr France's Williams and found them helpful? Secondly, I want to see a neurologist/ sleep specialist with an understanding of Fibro, not all have it. Can anyone recommend a good one in the UK? Has anyone seen either Dr Silver in the Wirral or, Dr Leschziner at Guys? My GP will only make one referral, so I want to know I'm seeing one with an interest & good understanding of this awful illness. Please can someone give me some advice or feedback on their experiences of either team or another Dr they'd recommend?

Thanks

Amy

[bluebell99]

Hello and welcome to our community. Here you will find support, advice and information along with a giggle or two.

I am sorry I am unable to help you with your enquiry as I do not know these doctors. Who diagnosed you with fibro and how long ago? Are you dissatisfied with your present or current treatment?

You can find more information on our Mother site which is fmauk.org.

Other members here may be able to tell you of their experiences with their doctors and any specialist fibro clinics.

The rheumatologist who diagnosed me is primarily a lupus/auto-immune specialist who sees my fibro as more of a secondary condition so he would not really be suitable for you.

Sometimes a rheumatologist will refer back to the GP for ongoing treatment and this is perfectly normal. The treatment tends to be the same whether it is clinic led or the GP.

I wish you luck.

[AmySholay in reply to bluebell99]

Hi BlueBell,

I was diagnosed through a Rheumatologist, in 2014.

They also suspected I had lupus because I have continuous double stranded DNA & some inflammatory markers. Yet, I've had no follow up or bloods taken since then & very little support or monitoring either condition.

I also don't have the original lists of tests taken, even after asking for them. Do you know what tests should be taken to diagnose lupus? And should any be taken more than once?

Thanks for the mother site details, I'll check it out when I can.

[TheAuthor]

Hi AmySholay

Welcome to the forum and it is wonderful to make your acquaintance. I have not been to any of the hospitals or seen the doctors that you have mentioned sorry.

Can I please just add that HealthUnlocked does not allow negative comments about identifiable doctors or hospitals on the open forum and we have to delete them if they appear here.

I want to sincerely wish you all the best of luck, and please take care of yourself.

All my hopes and dreams for you

Ken

[Keithotoole]

I have had fibro for 15yrs. The only people in all that time who are helping me. Are the pain management team at my local hospital.At least they believe in fibro and that's a great start. It may be worth trying. Good luck.

[AmySholay in reply to Keithotoole]

Hi Keith

I was diagnosed in 2014 and I'm still waiting for a pain Clinic appointment, after being referred nearly 2 years ago now. No one has contacted me yet. I've been in constant pain since 2009. It took my GP 5 years to even refer me to a Rheumatologists to obtain a diagnosis. Since then there's been very little I put from anybody.

I don't know what if anything a pain specialist could do to help. Have you ever had injections or trigger point message etc?

[Keithotoole in reply to AmySholay]

My GP would not help me so I kept pestering them at the pain management once a week eventually they gave in now have an appointment in two weeks. Worth trying. You have nothing to lose.Good luck.

[bluebell99]

Hi again AmySholay I would get back to your GP or other GP in your practice and say you have been left in limbo. I have found that it is wise to be very proactive with the NHS.

Ask for another referral perhaps to a different hospital and another few blood tests, particularly the Lupus ones. HU have two Lupus forums here where you will be able to get more information. The recommended route will be through Guys, previously the Louise Coote clinic in ST Thomas'. The lupus site will tell you more.

Fibro and Lupus do tend to go hand in hand along with other autoimmune conditions and I am appalled on your behalf that you have been left so long without monitoring.

My consultant would be ideal for you but there is a bit of a waiting list. If you would like to know more, please PM me

X

[Keithotoole]

Hi I have found that everything I have tried does not get rid of pain. The pain killers I am taking only take the edge off. I have tried injections in my wrists and knees all they did was cause more pain for days after. It is in my opinion nearly impossible to keep up with the pain. I am afraid you need to try anything and hope something helps.I am afraid at the moment fibro seems nearly impossible to get on top of. But good luck.