When it's not the Lupus and associated.

[littleeffie]

Hi all,

I recently said in a reply how I kept being told a problem with my neck was the Lupus or fibromyalgia until a locum looked and found I had thyroid cancer.Well you would think or at least hope that the doctors would take more notice but no.

Last December I fell over at hospital due to exhaustion of trying to be super fit normal mom to my youngest son who was suffering c-diff.A slight sprain they said having picked me up which I took as fact as more interested in sons well-being. Shoulder kept hurting ,saw rheumy nurse and was told its probably aggravated your arthritis, Lupus or fibromyalgia and had an injection in shoulder which did precisely nothing for the pain or loiss of strength.Given that hmm its in your head,your age or the fibro brush off.Sent for physio who yanked my arm ,yes actually yanked it which is not good and maskes me retch and go feint.She goes out of cubicle ,comes back and says" I think you need to go for some fibromyalgia therapy" Then discharges me. Arrggghhh!

Went to gp and said "cut me danged arm off its no use to me like this!"

Sent for X-ray and MRI Finally after 8months of agony get MRI back and find that my bicep is three quarters ripped off the bone and jamming in the shoulder.So going to see orthopaedic surgeon next week.

I read many true experiences on here and think if they were in a book people would say that they were all made up because all that couldn't possibly happen in real life.

So the moral of this (sorry so lengthy) tale is we know our own bodies best so don't be fobbed off.

Thanks for being there to listen to my rant but ,honestly, you couldn't make it up.

Take care all x

Effie

[Bronagh2015]

Oh Effie, you poor thing you have been to hell and back!! I have said on this forum before and I say it again the one thing I have learned in 20 years with these conditions is that you must fight your own corner and if you haven't the energy your nearest and dearest must do it for you. I hope the ortho surgeon can sort you out quickly as you really should not have to suffer any longer. Did you have your thyroid gland removed and do you need treatment?

[littleeffie in reply to Bronagh2015]

Hi Bronagh and thanks.

Yes I did have two surgeries and radioactive treatment.

I had post op internal bleeding and infection after the first and ,thanks to poor healing from Ehlers Danlos, I was lucky enough for the wound to burst in a dramatic fashion releasing the pressure that would otherwise have killed me in my sleep.3weeks on iv antibiotics and a blood clot after I had to go back for second op which thankfully went well followed a few weeks later by the radioactive treatment. I have a great survival scar to remind me how lucky I am.

I don't think we can sit back and leave it to the medics as living with it all is the biggest learning curve.

[Bronagh2015 in reply to littleeffie]

Yes you're right Effie it certainly is a learning curve and not a pleasant one! It will take you a long time to heal both physically and mentally after such trauma so go easy on yourself and keep us updated on your progress 😊

[Barnclown]

Am v glad of this update littleeffie...but oh: you've been through an awful lot...sounds like you're over the worst of this thyroid ordeal, but your descriptions of it all makes me feel that you are really being very brave & positive about things. I can tell you do know your bod v well, so am sure you're taking good care as your recovery continues...please do let us know how this goes

I also want to thank you for making me smile re your plea to your GP: "cut me danged arm off its no use to me like this!"...cause I can totally relate:

The medics let a rare tumour of the connective tissue (chondrosarcoma) grow on the cartilage of a finger joint for 14 years while telling me it was normal arthritis. When the growth became constantly painful, around year 10, I asked my GP what could be done: he looked me straight in the eye & said: we can see about amputation. I was v naive back then (my infant onset lupus & ehlers danlos hypermobility were going unrecognised) & simply snatched my hand away from him....assuming he was trying to put me off by shocking me. Eventually a brilliant ortho surgeon recognised the tumour as dangerously malignant in A&E, and performed an emergency amputation...

And: a few years ago, after 8 years of increasing lameness & various medics saying there was nothing more to be done + that I should start relying more on a wheelchair, the CRPS became so unbearable in my right forefoot that i asked rheumatology if the foot could be amputated...they said no, of course not (in CRPS amputation can simply lead to transference to another body area) but they encouraged me to seek referral to a CRPS expert...via my hero pain consultant, I found a brilliant prof ortho surgeon on the other side of the country whose treatment plan keeps my forefoot 95% pain free...haven't used a wheel chair since....

As you wrote above: these are but 2 of the many incredible stranger than fiction tales here on our wonderful forum. Your comment says it all:

we know our own bodies best so don't be fobbed off

Thanks for a great post👏👏👏👏

🌻🍀XO