My Journey

My Journey

I am a mother of three great kids! One is home from college right now but the other 2 are in their 30's & have families & live here & overseas!

Happily married & was diagnosed with Fibromyalgia & PKD/PLD in 2007. Was told by my doctor that there was no treatment for it & if eat clean & exercise- I would be fine! I pulled & pushed for the next 9 years & finally was diagnosed with RA in late 2015!

My hands & wrists are always so painful. My doctor says my ulnar nerves are shot. But I have been on temporary disability for quite some time now due to emotional problems, depression & relentless fatigue.

I have started paperwork for permanent disability because I don't think I can type any longer. And my hips, knees & feet are also very painful. I feel bloated & feel pressure constantly under my entire rib cage. My GP says it's Fibromyalgia but I haven't had X-rays or any MRIs since 2007 & we know our bodies best.

I feel there is more going on inside me than just phantom nerves being triggered. But we will see, huh? I don't trust many doctors any longer. But I will fight every step of the way when a doctor tells me "it's all in my head!

7 Replies

  • Good Lord!

    First of all, hello! Congratulations on having a fab husband and family, I think that helps. But poor you. Have you seen an actual consultant ever? GPs, even good ones, do not know all the ins and outs of these diseases. There is help out there, you only have to explore this site to know how many different treatments there are, and what help is available. You are right, we do know our own bodies. You need a better doctor and better help and treatment now! I do hope you find a good listening person soon. I think this has gone on long enough. Let us know how you get on. Best to you x

  • Mornin Gforcemom I agree with priss58 you need to see a rheumatologist. Your own GP probably is nice but that's not their expertise.You need blood tests doing and x-ray.I started with Fibromyalgia but have now RA &APS too and know how tired you get.It makes you old before your time.Have you beenput on any mmedications.

    My GP refused to send me back to a rheumatologist until I'd agreed to give up work as he said it was a waste of time.He was right as I just got worse n worse n ended up in hospital. Please getmore help before that happens to you.

  • Good Choice x

  • Oh I am sorry. I am not sure what pkd/pld is. There are some fine doctors out there but sadly I know there are quite a few who should be given more training or something. I just had an experience with a breast cancer doctor who just couldn't understand my symptom and because it didn't fit any criteria he just became abrupt. I left feeling tearful. He didn't recognise what was wrong so kind of decided it must be in my head. Its not. I keep calling him a bastard every time i think of him since yesterday! Doctors can make you feel really Ill ironically. I must have a phantom nerve too!

    Don't give up. Keep fighting. What meds you on for RA? I was told I had fibromyalgia but it wasn't. I went quite a while before I was correctly diagnosed. Steroids can make you feel bloated. When are you seeing a doc next?

    Try and be strong.


  • Thanks for the reply Cathy!

    PKD & PLD is Polycystic Kidney & Liver Disease & I am in stage 2 of Kidney disease. But once again no doctor has put any these medical pieces together even though I hand carry my past records with me!

    The Medical Community sucks! We have all this technology but we can't put patients medical records in a data base to keep accurate accountability for our ourselves & the medical professionals? Just plain ignorance 😡

    Sorry for the RANT!😞

    Just tired from fighting all the time! But as I stated before - I will never give up😉🌹☮

    Gentle hugs & positive energy to you, dear one!

  • You rant as much as you like! :-)

  • I was also diagnosed with probable fibro after having RA for quite a few years & when i asked rheumy what it was he threw a booklet at me and said see what you think. Fibro seems to be the end diagnosis when nothing else fits fully- keep pushing for mri xrays etc and other scientific confirmations if you feel more is going on and good luck.

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