Diagnosis at last!

[ErosisSore]

Hi, I hope that everyone is as well as they can be. Sorry I have not posted for a while but I have been reading all the daily posts, the reason being that I hadn’t as yet been given a diagnosis. Those who have read my previous posts know that for years I have been having problems with pain and other symptoms and not one doctor was willing to listen. I then tried the 3rd doctor at my local surgery but due to him being Chinese and not speaking or understanding much in English I sent an email to him with all my past symptoms, he then put me on Naproxen and Amitriptyline and then said would refer me to rheumatology. This was back in June and I also had a physiotherapy appointment at the end of June. The physio didn’t go very well though as he wasn’t really listening to me, nearly had an argument about waiting times for appointments as he insisted it only takes 4 weeks ,not months as in my case! Then just said loose weight and put my feet up night!

Since June I have been keeping a daily diary of all my symptoms. Yesterday I went to my actual rheumatology appointment at the hospital taking with me my letter to my doctor and my diary. I got to see the consultant who is a woman, English and very nice and down to earth, which I was so relieved about! She read all my letter and notes, discussed each point and how I was feeling now. She even said that the doctor had asked her to examine me for Fibromyalgia! So she gave me a thorough examination using pressure and pin prick tests plus others to test for arthritis and muscle strength. Her diagnosis was yes I do have Fibromyalgia, Hypermobility Syndrome plus she thinks other osteoarthritis problems! She thought that most of my problems had actually began in childhood and was amazed that my symptoms had always been dismissed by doctors! I’ve been back again today for xrays and bloods and need to have nerve tests and scans. Need to discuss Meds with my doctor and back to physiotherapy.

I was so relieved to have come out with an actual diagnosis when no one from doctors to friends and family have believed that there is anything wrong with me and it’s just depression or in my head!

Sorry it’s a long post and thanks for reading!

Jo x

[TheAuthor]

Hi ErosisSore

It is really good to read that you have finally got somewhere in the way diagnosis and I sincerely hope that your medications work well for you. I want to sincerely wish you all the best of luck, and please take care of yourself my friend.

All my hopes and dreams for you

Ken

[ErosisSore in reply to TheAuthor]

Hi Ken

Thanks for your kind words!

Jo x

[TheAuthor in reply to ErosisSore]

Good luck my friend x

[Kitten-kat23]

So pleased you got a diagnosis, I hope your treatment is sorted soon.

[ErosisSore in reply to Kitten-kat23]

Hi Kittan-Kat23

Thanks for your kind words!

Jo x

[Hidden]

It is such a relief to get that diagnosis, I had symptoms for about 30yrs before i became too unwell to work. Over the years i swung from whats wrong with me to not even believing myself that there was anything wrong.

But if there is nothing wrong after all the test that i have had. Why do i always feel like s**t.

After the diagnosis it all fell into place.

[ErosisSore in reply to Hidden]

Hi mayrose54

Thanks. It's terrible that symptoms have to drag on for years before anyone takes notice isn't it as by then a lot of damage in the body is done. Looking back I now know I have been suffering since I was young but no-one took any notice. I wasn't expecting much when I went to the hospital going on from what I've read about others trips to rheumatology. So as you say it is such a relief to get a diagnosis!

All the best

Jo x

[annacruachan]

Hi ErosisSore , it must be such a relief to get a diagnosis and treatment after all this time. So glad for you. Gentle hugs. Anna xx

[ErosisSore in reply to annacruachan]

Hi annacruachan

Yes it is and thanks for your kind words and hugs!

Hugs back!

Jo x

[suebob59]

Hello Purplejo.

I can relate to your story. I'm now 59yrs old and since my mid 30s I've had similar symptoms as you and many others on this forum. I'm glad I'm not alone now. Ive been diagnosed with high BP and under active thyroid for many years and take medication. I also have osteoarthritis in hands and lower spine, and now awaiting results of x rays on neck. All of this I have coped with, but every so often I am just stopped in tracks by aches pains trouble thinking properly and inability to sleep. But the worst is my confidence is totally gone.This is happening now having started again about 3 monthe ago. I'm not sure where to go now as I think my GPs don't believe me.

[ErosisSore in reply to suebob59]

Hi suebob59,

I'm nearly 45 and the consultant thinks the Fibromyalgia stemmed back to a virus I had in my early teens! Was also surprised that doctors didn't pick up on my hypermobility. I had to put all my symptoms in writing for anyone to listen to me. I had xrays yesterday but they didn't do my neck which I thought they would as I can hardly move my neck, arms and shoulders without pain and the consultant said I have no muscle strength. So maybe they will do scans instead. I have just got my appointment for nerve tests for 2 weeks time. 9am in the morning and it's half term so need to find someone to look after the kids...lol! I know what you mean about the confidence thing too, this fibro fog thing and memory loss does not help with it either as people think I'm spaced out and I keep having to ask people to repeat things and I write every down, that's if I can remember by the time I get to my note pad...lol!

Maybe you should try writing down your symptoms and thoughts and try maybe approaching a doctor who you would not normally see?

All the best and hugs

Jo x

[suebob59 in reply to ErosisSore]

Thanks for the reply Jo, I'll do the list and show Dr next time.

A big hug back to you xxx

[JOANTWEDDLE10]

Hi I have recently been diagnosed with fibromyalgia and have osteoarthritis too!

I understand your relief about your diagnosis because I too thought I was going mad! Just need to get medication sorted now.

Good luck I hope you get sorted.

[ErosisSore in reply to JOANTWEDDLE10]

Hi JOANTWEDDLE10

I know I could of cried with relief about it, I was so happy about diagnosis even though I'm still in pain and knackered...lol! I just need to try and get pass the doctors receptionist now to try and get my Meds changed, I know they won't give me an appointment though even if I stress I've seen a consultant and will make me see the nurse first who will then say....you need to see a doctor!

Thanks and I hope you get your Meds sorted out soon and they work for you.

All the best

Jo x

[Yippity]

hi Jo, so glad that at last you can concentrate on your needs instead of having to try to convince the medical profession of what you have. I was only diagnosed a few months ago but I had not realised what my symptoms were and the doctor did not suggest it. I also have ME so I thought it was getting worse. Then I seen in an article all my symptoms and realised it was fibro. I asked the doctor if that was what I had and he said yes I believe so. Just like that I was diagnosed! We all have stories of how we are diagnosed and they are all different, surely it should not be up to us to do the research and persuade the doctors, should they not recognise it themselves. It is a hard path but it is our path and we learn how to walk it because we have to, I hope you find the best meds to suit you Jo

Andrea x

[ErosisSore in reply to Yippity]

Hi Andrea

I know it's really bad that you have to look things up yourselves these days, thank goodness for the Internet in some ways eh! I didn't know what was going on with me so I just Googled .....electric jolts to the body...and straight away it came up with Fibromyalgia. After reading the list of symptoms it sounded just like me, although had never heard of it before! So yes I think doctors and other so called professionals should be aware and are trained into knowing about these things. It's like when I went to physio he couldn't answer my questions about anything and no comment about Fibromyalgia when I asked him!

Thanks and all the best to you to

Jo x