Advice Please: Hi. I have been a member... - Fibromyalgia Acti...

Fibromyalgia Action UK

59,437 members66,487 posts

Advice Please

Misty-Moo profile image
18 Replies

Hi.

I have been a member of the forum for a while now, but this is my first post.

I was diagnosed with a chronic pain disorder, PTSD, and depression 2 years ago as a result of a car accident. About a year ago I went to my GP and asked him if I had fibro, as I had the full body pain, chronic fatigue, stiffness etc, and asked him if he would refer me to a Rheumatologist. He said he didn't need to as he could check the pressure points, which he did, and said, yes you have fibro. However he didn't put this on my notes.

In my long winded way, what I am asking your advice is who would actually diagnose Fibro ? I am thinking about going back to see a different GP and asking them to refer me to a Rheumatologist. Do you think that would be the correct way forward ?

Any advice would be gratefully received xxx

Written by
Misty-Moo profile image
Misty-Moo
To view profiles and participate in discussions please or .
18 Replies
Lruk profile image
Lruk

Fibro is most commonly diagnosed using the pressure points test and many GPs make this diagnosis. Some people, like myself, never see a rheumatologist and yet have a diagnosis and treatment.

Perhaps you should make an appointment with another GP and say you were given this diagnosis but would like some further advice on what the future might hold and that would make it clear if your diagnosis was in your notes or not.

Misty-Moo profile image
Misty-Moo in reply to Lruk

Hi Lruk

Thank you for your reply.

That is really good to know. I didn't realise that it could all be done via your GP.

I will definately take your advice. Xxx

BlueMermaid3 profile image
BlueMermaid3

Hi there

As Lruk says some of us have been diagnosed by our GP and some by a Rheumatologist. Were you hoping you would be getting more help by seeing a Rheumatologist?

I can only speak by personal experience, but I have seen other posts saying the same thing. My Rheumatologist diagnosed me, gave me a leaflet and discharged me back to my GP!

I would say that it very much depends where you live in the country as to what help you get from whom. Your GP and Rheumatologist can make pretty much the same referrals for you if you were hoping to go to a Pain Management Clinic or need referrals elsewhere.

Is there a different GP you could see in the same practice before you change? If not, a change of practice could be a good idea. However, you have every right to enquire why your GP did not write his diagnosis on your notes, as he has a duty of care to you.

Lu xx

Maladjusted profile image
Maladjusted

When my GP diagnosed me, she told me there was no treatment and no cure, sending me on my way with codeine and anti depressants. I asked if I could be referred to a Pain Clinic, from there I was diagnosed and given lots of help & advice, such as pain management course, physiotherapy, hydrotherapy etc. At the pain management course my treatment was also covered and corrected.

Em x

Misty-Moo profile image
Misty-Moo

Hi Em & Lu

Thank you both for your replies.

There are other GP's in my surgery so I can see someone different and ask why it's not on my notes.

I think I was trying to find out if a Rheumtologist did anything different from a GP, but it sounds like they don't.

I am also trying to distinguish if the treatment for FM is different from the chronic pain that I also have. I have just been referred to the pain clinic, so it sounds like it's a good place to have a conversation as well.

Thank you for your advice. It has really helped to get things clearer in my head.

K xxx

landslider profile image
landslider in reply to Misty-Moo

Hi K

MY GP thought I had some sort of rheumatic thing going on because of my pain and a swelling in my that would not go away. One of my blood tests also showed a +ve rheumatoid thing.

Anyway, rheumatologist checked me over and did some little scan things with a machine in his office - similar to the pregnancy jelly thing but very small - this showed cysts in my knee for which i was referred to orthopaedics. He also asked 101 questions re my pain etc and felt certain areas before saying I had fibro.

When I asked him for more clarification he just said it is a chronic illness - I asked if I would get better - again he just said it is a chronic illness and I should continue with the medication the GP gave me. He did say I should return in 3 months - that was on 5th March and have not had my next appointment yet - should be due in 2 weeks.

I have learned more on this website speaking to you guys and my GP is very good so I am quite lucky there.

Hope you get some resolution soon ;-)

He was good with regard to helping my knee

BlueMermaid3 profile image
BlueMermaid3

Hello K

I have Fibro, Chronic Fatigue Syndrome, Hypermobility Syndrome, depression, General Anxiety disorder and various other issues, i.e. IBS, bladder problems, etc

I saw my GP recently and she suggested sending me to a Chronic Fatigue clinic. I asked her if that was the same as the Pain Management clinic and she said no, it was a variety of clinics that helps with chronic fatigue. I have been referred and am waiting to hear back.

Treatment for Fibro tends to be getting medications that are right for you. I have various pain killers, antidepressants and meds for my anxiety.

It can take years to get the right set of medication that works best for you. Sorry to sound so negative but unfortunately Fibro is very unique to each individual and what works wonderfully for one person could be a disaster for another.

Does that help? If not, let me know and I'll try to help some more.

Hugs Lu xx

Misty-Moo profile image
Misty-Moo

Hi Lu

That is great help. Thank you.

K xxx

BlueMermaid3 profile image
BlueMermaid3 in reply to Misty-Moo

Hi K

Very glad to be of some help ☺️

Let us know how the Pain Clinic goes

xx

Misty-Moo profile image
Misty-Moo in reply to BlueMermaid3

Will do xxx

TheAuthor profile image
TheAuthor

I can see that you have been given some wonderful advice so I will just wish you all the best of luck.

All my hopes and dreams for you

Ken

Misty-Moo profile image
Misty-Moo

Hi Landslider

Thank you for sharing your story with me. It has helped put a few me pieces of the puzzle together.

I have to agree I have learned more from everyone kindly taking the time to give me some advice than I have in months of reading on the Internet.

K xxx

Misty-Moo profile image
Misty-Moo

Hi Ken

Just knowing that someone wishes me the best of luck, has put a very big smile on my face this morning 😃 Thank you !

K xxx

EquineArcher77 profile image
EquineArcher77

Personally I would push for a second opinion, just because I am a skeptical! My GP had no idea what was wrong, the rheumy I went to see first of all diagnosed fibro and shoved me out of the door within 5 minutes - no physical exam! I then stropped at my GP who reluctantly referred me to a second rheumy. That guy was great! Spent 20 minutes with me, a very thorough physical exam and full medical history discussion. He then asked me - "are you not aware that you are severely hypermobile?" Nope, I hadn't got a clue. My Fibro is secondary to HMS, and thanks to him I got referred to the service most helpful to me - physiotherapy and core strengthening.

Misty-Moo profile image
Misty-Moo in reply to EquineArcher77

Hi EquineArcher77

Thank you for your reply. It is difficult not to be skeptical when dealing with doctors and conditions such as FM and Chronic Pain ! The trick, I have now come to the conclusion is finding a doctor that does understand, whoever it may be, ie GP, Rheumy, Neurologist !

Thanks to yourself and others I now have a very clear idea of my way forward. So I truly appreciate you taking the time.

K xxx

queen-of-bedlam profile image
queen-of-bedlam

hi misty-moo. tnx for sharing your story. I just have a couple of things to add. first, I had had major depression, anxiety disorder with panic attacks and chronic pain from arthritis for many years. However, my fibro symptoms started after a physical tramas, like you. I've read that this is common. second, in addition to a rheumatologist, you might also seek a physiatrist (not psychiatrist). mine treats people with fibro, ME, etc. sending good vibes your way!

Misty-Moo profile image
Misty-Moo in reply to queen-of-bedlam

Hi Queen-of-Bedlum

Thank you so much for your reply. I really do appreciate it. I have never heard of a physiatrist, but having now looked it up, that is most defiantly an avenue I need to persue.

Sending you lots of good vibes back .

K xxx

queen-of-bedlam profile image
queen-of-bedlam

so glad to be of some help. i had never heard of a psyiatrist either until i was referred to one. wishing you all the best in living with your issues!

queen-of-bedlam

You may also like...

Bit of advice, please...?

want to ask GP is she will refer me to NHS consultant but do you think she will be annoyed I didn't...

Please - advice needed

have had fibro since I was 17 (diagnosed as fibrositis then), which I thought was just muscle pain...

Advice on looming tribunal please

help with advice on DLA tribunal Wednesday next week. My husband is coming with me but car park is...

In process of diagnosis, advice please?

a bit of advice. A specialist thinks I have this, but I don't think I have 'widespread pain', as...

A little advice please?

makes me very sad. Any advice would be greatly appreciated - thanks in advance xxx