Another pointless appointment

[yorkshiregirl44]

Went to Rheumy appointment because of joint stiffness, pain and swelling. Discussed my medical history with registrar and pointed out that i was unhappy about going down the road of a second fibro diagnosis as i didnt fully beleive the condition was real or helpful. Registrar seemed to agree with me and said that people would beg him for a fibro diagnosis..i replied i am not one of them.

After seeing registrar i was seen by theconsultent and was told that the swelling was in my soft tissue and not joints...he then concluded that I had fibrmyalgia...a diagnosis i was not happy to accept.

He proceeded to say that many many patients wanted this diagnosis to claim benefits or were malingerers. As i was not either of those two he said he had no doubt that i had fibromyalgia.

I feel like giving up.. no more appointments for me its too stressful..

Thanks fo listening

Christine

[puncturedbicycle]

I'm sorry to hear about your experience. I think this must be why so many people go the self-treatment route. It isn't just about getting your meds; some of it is about taking control back from the professionals who don't seem to give a stuff.

[yorkshiregirl44 in reply to puncturedbicycle]

Too right..they make a joke of our ongoing battle to recover.

[Marz]

ncbi.nlm.nih.gov/pmc/articl...

Am not sure if this is right for you - just something I came across..... x

[yorkshiregirl44 in reply to Marz]

Iv just had a quick glance it looks interesting, thanks

[Glynisrose]

Fibromyalgia is a SYNDROME not an illness and is mainly hypothyroid un - diagnosed. It is used by doctors who have little clinical knowledge, a bit like any joint pain you have has to be arthritis!! I can understand you not wanting any more appointments it is very stressful, take some time and rest, then try again in the future. Malingerers? Obviously this doctor has been trained very badly!!

[yorkshiregirl44 in reply to Glynisrose]

Thanks....will need to chose specialist carefully next time

[Joyia]

Christine, I also have a diagnosis of fibromyalgia but am now researching a different path. The pains in my lower back have seriously increased and I started looking into ankolysing spondylitis. Dr Alan Ebringer is a specialist and has a very interesting 7 minute video on You Tube regarding AS, incidentally he also mentions fibromyalgia can precede this condition. What comes first the chicken or the egg situation, nevertheless he promotes and believes AS is aggravated by starches in the diet, AS people tend to have a bacteria Klebsiella in their guts which feeds on starches. Many find that by following a starch reduced or starch free diet their pains are reduced or gone entirely.

Personally I am finding some relief from the diet although to be fair I still eat porridge at the moment which may need to be eliminated. There is a website Kickass which has some brilliant guidance and blogs.

I printed off some evidence and showed it to my Doctor recently, he knew nothing about Klebsiella bacteria but did agree to provide a bloodtest for AS, what this will show I am not clear at the moment. Of course this may not be relevant to your own situation, but it seems AS is more common than is thought and not easy to diagnose, so once again we are left to floundering around. I have been trying to track down Dr Ebringer, I know he teaches at Kings College but whether he sees NHS patients I am not clear. One can ask for scans but these obviously can only be sourced via a Consultant. Whether the Consultant you see understands and believes in Dr Ebringers findings is another minefield.

I am mentioning this as it is an area you may like to look at, whether there is a condition such as fibromyalgia may be contentious but the aches and pains are certainly not, so any avenue that may help is worth a try.

Best wishes

Joyia

[yorkshiregirl44 in reply to Joyia]

I agree anything that helps is worth it..

[Psomaki in reply to Joyia]

Hello,I see that the post is three years ago I was just wondering if you find a way to visit this doctor or you just follow his diet.

Thank you

[Joyia in reply to Psomaki]

Hello Psomaki, yes this is an old post and unfortunately I did not get very far with the possibility of AS. I did have a NHS test but it came back negative, along the way I also gave up following a low starch diet. I still have lower back pain and have recently started Kore Therapy to see if this can help. It is an unusual therapy but was impressed with the Therapist who is trying to re-align my spine with gentle unusual manoeuvres. Hope this is interesting.

[Psomaki in reply to Joyia]

I am so sorry I just saw the reply by chance while still try to figure out why 8 can’t make be again and have so much pain.

Thank you much Joyia.

I didn’t know how to get back to the site.

I hope you feel better.

I think I should really take this diet serious and start doing it otherwise I will end up in a wheelchair

Take care.

[Kitten-whiskers]

Hello Christine,

Please don't give up, I completely agree with you and I am exactly the same - I do not go to the docs anymore, I get to stressed out and annoyed. I was labelled with Fibromyalgia (which I do have) but the wonderful news is T3 is great for that, I had swellings and terrible pain and stiffness, couldn't walk down the stairs had to sit on the stair and gently lower myself (this was before the days of T3) I can only tolerate tiny amounts of T3 at the moment but that is enough to make the Fibromyalgia ease by a good 70%.

I really feel for you and I hope things get better,

Best wishes

[yorkshiregirl44 in reply to Kitten-whiskers]

Thanks..its interesting that T3 helps you..iv never thought of that as an option