Gooddaysagain

[Gooddaysagain]

I keep reading of tests people have/had, e.g. for Vit B12, Vit D, etc., and specialists they have seen.After over 3 years of being unable to see a GP, I phoned last Friday afternoon in distress. I live alone and sometimes don't know how ill I am until a friend notices and tells me.

GP is new, and young, so trying to explain that I have been worse and that what she was seeing was 'just' a few nasty chronic conditions all happening at the same time - plus heat, with a body that can't control it's temperature.

She would have bundled me into an ambulance if there had been any available.... Ho hum!

I ended up sitting in A&E all night.

Luckily, the doctor I saw at 0700 - who'd also been there for 12 hours - realised my pain levels would be completely unbearable if they kept me in (as my GP wanted) until I could get a brain/CT scan, so let me leave until the scan could be booked. Which was Wednesday.

As I expected, it was all clear and there's nothing wrong with my brain....

(Head, skull, mind, perhaps... But not brain)

Now that I have the ear of a GP who seems to care, what tests would you recommend I ask for?

Along with Fibromyalgia, I also have OA/Spondylosis of the neck, CPS , CFS/ME, recurrent EBV and had blood poisoning from a tick bite 45 years ago (before anyone knew of Lyme disease) - Oh, and 6 toes no longer properly attached to my feet due to some mistakes made during an operation 40 years ago!

Trying to tell her not to worry because I've felt worse may not have been my widest strategy!!

All your recommendations for tests and specialists will gratefully received.

Thank you,

Dee

[Sarahvit]

I have had low B12 and vitamin D deficiency in the past. Was getting B12 shots weekly then every 2wks then monthly then every 3 months and recently they stopped with the B12 shots. I was on vitamin D 50,000u twice a week. I started seeing a naturalist doctor who ordered expensive blood work, had me on pre detox supplements to heal the gut. Then did a 14 day detox while educating on healthy foods to eat. I have lost 38lbs. Am walking my dog 2-3 times a day around the block usually 2 times. I have been involved in 3-4 Reseach studies on fibromyalgia and chronic fatigue syndrome. One study they did the FM/a blood test which test for fibromyalgia which tested positive for fibromyalgia. I can’t really say what tests you should get. Eating foods that are healthy like organic fruits and vegetables grass feed beef, free range chicken and wild catch fish. Staying away from processed foods and animal raised in enclosed buildings given steroids and hormones to speed up their growth weights like big breasted chickens who can barely walk, cows in knee deep fecees. It is finding a good doctor who will work with you with your health as a priority.

[Gooddaysagain in reply to Sarahvit]

Thank you for responding. I'd love to be involved in studies if only to get tested. I got ill when I lived a really healthy life in the hills of Wales with my own spring for water. Your diet sounds great but is beyond my pension limitations, I'm afraid.During the studies you were on, can you recall what else they tested you for that helped you to understand more or to make a change that helped?

Thank you.

Wishing you and your dog continued healthy walks!

Dee

[Sarahvit in reply to Gooddaysagain]

Hi Dee,

The first research study they ran a bunch of tests blood work, sleep studies, physical exams, PET scans and fMRIs of the brain, EEGs, psychological tests, tilt table test, exercise tolerance test. The sleep study should that the alpha brain waves interrupting the deep delta and theta brain waves causing unrefreshed sleep. Oh they did EKG too. They EEG showed slower brain activity that is similar to what they find in people who have ADD. They said they would let us know if anything abnormal showed up. A dentist examined us for TMJ which was positive for me. A pediatrician examined us for churi 1 malformation (I’m sorry can’t spell but it is a condition where there isn’t enough room in the bottom of the skull for the brain and causes symptoms similar to fibromyalgia) he said that I was showing signs of it. The second study was the blood bio markers I didn’t get any feedback from that study. The 3rd study they sent me the results of the FM/a blood test which showed 93% confidence of testing positive for fibromyalgia. The current research test I got a free Fitbit to wear for a year for them to gather the information from my activities and sleep. I also entered another study where they are testing my DNA for any malformations but haven’t received any results from them yet. That is all I can remember. Each research study basically build on the previous studies in understanding fibromyalgia.

I understand living on a limited budget. I can’t afford to continue to take all the supplements that I have been taking for this ultimate wellness program. I’m not sure what I will do with this diet. Thank you. Our walks haven’t been as long lately. I hope I was able to help in some small way. If you are good at surfing the web you probably could find some research studies in your area or sites like Patientslikeme have studies that they are involved with.

Wishing you luck in finding research studies that are available online or in your area.

Sarahvit

[Gooddaysagain in reply to Sarahvit]

Thank you, Sarah, for your thoughtful response. I have given up for a few days after spending yesterday afternoon building up.the courage to phone, and then begging (!!!), to see the GP who'd thought I was bad enough to send to A&E. Nothing has changed, and I still can't get to see a GP.... Who "may" phone back on Monday..... Ho hum!

I wish you better luck with your journey to wellness.

Loving hugs,

Dee

[Sarahvit in reply to Gooddaysagain]

Hi Dee,

I’m sorry you are having such an hard time with your GP. Are you able to switch GP? Not sure how that works in the UK. Here in the states we can switch doctors as long as the new one takes my insurance. Years…well decades ago I was able to contact the fibromyalgia network to find fibro friendly doctors that were referred by other people who have fibromyalgia that received good care. Everything has switched to computers and I’m not that computer savvy so haven’t had that the fibro friendly doctor list anymore. Thank you.

Gentle hugs,

Sarahvit

[Gooddaysagain in reply to Sarahvit]

I managed to see the GP yesterday. She is lovely, good at listening and very thorough.She was never the problem. It's the receptionist who makes it so difficult to speak to, let alone see, a GP.

I'm now going to have ALL the relevant blood tests done locally and will attend the Hospital's 'One stop shop' for a full body/system check that they offer to the over-60s with multiple chronic conditions.

Let's hope they find something treatable.

Thank you for being so caring.

Namaste,

Dee x

[Sarahvit in reply to Gooddaysagain]

I am so glad you got in to see your GP. Here in the US if there is a rude receptionist we can make a complaint with the doctor or office manager. Sometimes it help’s sometimes it doesn’t depending on the office. Speaking of doctors I’m at my doctors office now. I’m glad you are getting that work up at the hospital for people who are over 60.

You are welcome. Please not us know how things go.

Sarahvit

[Yassytina FMA UK Volunteer]

Hi Dee, I am currently having tests, including bloods, I am taking multi vitamins, vitamin d , c, cod liver oil , a few years back I was taking vitb12 on a blood test it was causing me too have high levels of b12 so had too stop , I normally get advice from doctor or my lovely pharmacist, I do get doctors don’t always spend much time with patients and sometimes not very thorough, by chance last Friday I got too see my old doc , spent 35 mins with checks, sent for blood tests,/X-ray straight away ,just wish their was more like him. So I am glad to read you have a decent GP on board now. I have too CFS , treated sleep apnea, xx