Fed up

[Hilsam]

I am 75. I have had ME for 35 years, Fibro for 12, and they now suspect that I might have Parkinson’s . I struggled with the Fibro, but managed. My partner was supportive, but unfortunately I lost him two years ago.

I was supposed to have a test for Parkinson’s - a nuclear scan, but have had to cancel twice as it takes 6 hours altogether, with waiting for various processes, and I just can’t do it. No one seems to understand the levels of fatigue I have with ME/fibro

My doctor is hopeless really. I know I should change doctors, but I haven’t got the energy

Sorry to be so negative, but I have reached an impasse. I need help but there is so little on offer. Because of worsening mobility I feel cut off from friends. I’m fed up!

[Africanmonkey]

You are in my prayers tonight and I will pass your name to my prayer group

[Hilsam in reply to Africanmonkey]

Thank you

[rosewine]

This must be so difficult for you. Do you mean that with the journey back and forth, and then the scan, it would take 6 hours? From what I have heard from other people, whose relatives have had the scan, the scan itself normally only takes about 45 minutes. Bad fatigue is so draining, and you feel you just want to lie down and rest all the time. To have ME on top of fibro must make the fatigue worse. I wish I had a solution for you.

[Hilsam in reply to rosewine]

Thank you

The scan it’s self only takes 45 mins, but before that there is a process by which you have to take the radioactive material then wait 3 hours and take something else then another period before the scan it’s self. They were running an hour late when I went last time and I just have the stamina to be there so long.

[rosewine in reply to Hilsam]

That's a long wait between taking the radioactive material and then having to take something else before the scan. I can understand why that wait would just be too long for you. If they could let you lie down you might be able to manage, but they don't seem to be geared up for anything outside the "norm". My heart goes out to you.

[Hilsam]

Thank you for your kind reply

I could have done it had I been able to lie down, but it was the rigid hospital seat or nothing. My consultant says that she can come to a firm diagnosis through observation, though it will take longer

Getting old with these different conditions is tough. Courage is sometimes all there is

[honeybug]

Hi Hilsam 🤗🌿🌸🦋

First; im so sorry about your plight love.

I am 74. Ive had CFS since late 20s then severe fibro since early 30s altogether i have 70 diagnoses with 3 pending.

Im losing my sight and nearly immobile. Naps in my wheeledchair since 2014 complications if i lay down in my bed. I can’t take the heat ir cold and seldom find a comfort zone.

I too am too complex health wise for any doctor to take me on. Been dismissed by more doctors than i can count. All told me in my mind/faker/attention seeker brought me to tears most times. Had given up until I decided to endure the worst treatment of all my doctors. It paid off. The more she berated me the more I complimented her about pretty glasses /attractive hair style/ etc. it was not kissing up to her but truly speaking admiration about those things. I got a referral to the top rated Neurologist at University and after double DNA testing i was diagnosed with very rare Inherited Erythromelalgia. It took me 64 years to get that diagnosis in writing proving all those dismissive doctors were worthless to someone like me and proving them all wrong!!! 😊

I totally empathize with you and give you my full support. There is a diagnosis out there for you and you’re not alone anymore.

🥀🥀🥀🥀🥀🥀🥀🥀🥀🥀🥀🥀🥀🥀

My condolences on losing your partner. I have a bereavement poem i would send you via PM. My internet connection is spotty at best so forgive me me if i cant answer quickly.

🥀🥀🥀🥀🥀🥀🥀🥀🥀🥀🥀🥀🥀🥀

Please take whatever measures you must to make you feel better. It isnt easy when there’s no cure and meds dont help or cant take pain meds like me.

Stay safe keep your hope and faith strong.

Sending abundant hugs love and prayers,

EvaJo aka EJ 🤗♥️🥰🙏🕊️🌿🌸🦋

Pkease forgive typos.