foxy-235

Hello Everyone

I recently joined this community & would like to introduce myself. I live in North Yorkshire, am married with 1 son, 3 stepdaughters with 2 children each, & also have 2 border terriers. I retired nearly 5 years ago after working full time in the NHS since 1974.

I was diagnosed with Rheumatoid Arthritis 5 years ago, which was triggered following a severe reaction to cancer drugs. Many autoimmune inflammatory responses resulted in lots of surgery, eg carpal tunnel, lung filling with fluid. I'm not going to bore you with all the details, although you have the picture with 5 different hospitals, 9 operations in 10 months! The carpal tunnel surgery was too late, so I have permanent median nerve damage to both hands, consequently on powerful nerve ending analgesics to be able to use my hands. I do not have a spleen, & also have low immunoglobulins due to the medication. Many combinations of drugs & dosages have been tried for the RA. I am currently taking sulfasalazine & azathioprine . I am lucky to have a fab loving supportive family, caring friiends, brilliant rheumatology team, & a knowledgeable understanding GP. I'm also fortunate to be a positive happy person, although I'm not saying I don't have the odd duvet time! Some days it's all I can do to get showered & dressed after a morning in bed! I know I'm lucky I can have that time as I'm now retired, & many people don't have that choice, due to having to look after children, go to work etc. I find Iyengar yoga, pilates, gentle swimming , complimentary medicine & walking the dogs helps the stiffness & pain. The hardest part for me has been getting used to the fatigue & now plan my life accordingly. I believe in never giving up, showing up with a smile & lippy on! There are so many people in a much worse place than me, also without the love & care I have around me. I have also read extensively regarding nutrition, complimentary therapies & believe everything working together with western medicine helps manage my autoimmune inflammatory disease. Thank you for reading my snapshot of me & my RA. I'm looking forward to sharing experiences & supporting one another.

Very best wishes

Carol X

10 Replies

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  • Hi foxy-235

    and welcome to the site. I have put a link below to our information on fatigue for you to look at:

    nras.org.uk/publications/fa...

    Hope you find it useful.

    Regards

    Beverley (NRAS Helpline)

  • Hi Beverley

    Thank you for the link re fatigue, which is a helpful read & checklist to make sure all the issues have been considered & added into your lifestyle. I have a great rheumatology specialist nurse & chronic pain team who have made sure all avenues have been discussed & put in place. I saw a councellor/hypnotherapist privately to help me better manage the pain & be able to reduce the amount of toxic analgesics, also to improve the insomnia. My solid blocks of sleep are much improved & I have far less really bad nights of little sleep. I have found the fatigue is something you need to accept, plan life accordingly & it's ok for me to take it easy after several busy days. That's easy for me, as I'm retired! This is a really great site & I wish I had joined earlier. I have worked in a rheumatology professorial unit myself as a nurse, many years ago now!

    Thank you.

    Kind regards

    Carol

  • Welcome Carol. You'll find lots of help and support on here, pictures and laughter. Don't worry if you have to rant, we all need to sometimes. Take care.

  • Thank you. Wish I had joined earlier! I agree there are times when we may need to have a rant!

    You take care too.

    Carol X

  • Welcome Carol, i am a 60yr old with ra,fibro,cfs,menieres.I am going into hospital on Sunday for weight loss surgery for my health. You have joined a great bunch of people from all over the world. xxxxx

  • Hi Sylvi

    Thank you for your reply. Yes this site is really good with lots of lovely people all suffering similar or the same issues, & I wish I had joined it earlier!

    Hope your surgery goes well next week.

    Carol X

  • Hiya Carol,

    welcome to the forum, there is so much experience and "life" on here it's easy to lose time just having a read!!

    I've not heard of Lyengar Yoga, what's that like?

    Here's to a good day!

    J x

  • Hi Jayne

    Thank you for your reply. My message should say Iyengar yoga, & it's really good, all about posture, alignment & stretching which is brilliant for aching stiff muscles. I go to a class once a week at the moment, which is for 1 hour & quite intense, although I cope. The teacher is great at adjusting the poses for each person, as required. I always feel so much better for a few days. I do stretches morning & night at home which helps reduce the stiffness. I didn't know anything about this kind of yoga until this year either.

    Carol X

  • Hey

    Thanks for that I did try and google it to see if I have classes near me, I don't know if I would be able to get up and down off the floor mind due lol.

    But I would like to give it a go.

    Thanks for letting me know

    J x

  • Hi thanks for the reply. Sounds as though we have lots in common re nutrition & complimentary therapies. Great site & lots of experiences, support & care.

    Carol X