Chronic Fatigue Syndrome/ FM Symptom Checklist

Who Me?

Well-Known Member
Hi,

There's an Introduce Yourself Thread in the Community Section. You might want to post this there.

I feel fantastic (relative) after a few days of utter crap.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Chronic Fatigue Syndrome/Fibromyalgia Symptom Checklist

Katrina Berne PhD, Livingwithwellness.com

I've been using this one for years. It seems to cover all areas.

I take it to every doc appointment, more to keep my file updated for disability reviews with the hopes my doc might actually look at it.

http://www.anapsid.org/cnd/diagnosis/berne.html
That's great Minx. I'm going to put it in the Resource section as well. Thanks for reminding me of it.
 

Who Me?

Well-Known Member
I like this one alot because it's much more customizable than others and I think covers more body systems.

I never fill out the psychological questions. That reminds me I had a new doc a few years ago who asked me every way possible if I was depressed without coming right out and asking me.

When I confronted him about his not so subtle attempts to get me to say I was depressed he looked stunned. Like he couldn't believe he was so transparent.

That was the first and last time I saw him.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
:bag::bag:

Thanks - I needed a good laugh...I thought it was funny anyway :)
 

Who Me?

Well-Known Member
My doc, who was great left the practice and they searched for months for someone comparable. This guy was a joke.

At the time I was stunned at how obvious he was, now I just laugh. Glad I could entertain you!
 

Joanna

Member
Please feel free to move this post to another more appropriate forum heading if appropriate.

I am in the UK.

I faithfully listed and described all my symptoms when I transferred to a new GP surgery about 2 years ago. This did no good. They just totally disregarded them as had the previous GP. My most serious symptoms were not addressed at all. I would bring them up and the GP would act as though she had not heard me and never answer the question except to say something occasionally like "Your tests all came back normal." or "I think this is due to an emotional problem" in the case of jerking and shaking when pushing through exhaustion as she had advised me to do, or collapsing onto my kitchen floor when i was trying to get something to eat after having been up out of bed to walk a bit every hour in my flat.

At first, in the new surgery, I was treated by a caring but ineffective trainee doctor who I am sure from the way things played out, must have had to keep checking with her mentor, the senior doctor of the practice, for the first several months at my GP surgery. i was ignored completely and then assigned to another doctor when she left for a permanent job. She had seen me at home, but now I was not offered this service. After several calls to the surgery by my Socisl Services Case Manager, who said they were not helpful at all, the 'assigned' new doctor showed up at my house with no warning or appointment. Her stated areas of interest are OB/GYN, neither of which I remotely need. She was rather patronising, and did not stay long, answered none of my questions. She sent a letter after that, asking me some questions and I replied after some weeks with a long letter stating clearly and in an organised way what my symptoms are, the fact that they had not been addressed, or addressed adequately, saying what I felt I needed and what the priorities were. At the end of the letter, i gave a number of links to the latest research studies, this website, and some other references, all from highly reputable sources. She then replied in a letter to me that she had discussed this will all of the other partners in the surgery and they agreed that it might be better for me to look for another surgery practice.

I am now without a doctor and have no idea how to find one in my local area who will see me at home (I am mostly bed bound) and who treats patients with this illness in an appropriate way, believing the research and current findings, statements from IOM, etc. I can't even get a proper diagnosis as the local NHS clinics are all run by a Rheumatologist and his wife along with psychologists, etc. (She does the graded exercise programme and he does research on psychological factors which supposedly impact on the 'recovery' from this illness (CFS)) He states that he will not accept Fibromyalgia patients (my only diagnosis aside from Osteoporosis) into his treatment programme, as he claims they are at the opposite end of the spectrum (whatever that is supposed to mean)

My support worker was evidently informed by the surgery of their letter to me and told something to the effect that I had not followed proper protocol by attending a diagnostic appointment with this same Rheumatologist, who has published articles and 'research' documents in which he states similar assertions to Wesselly's views about the illness, the fact that it is no longer a physical illness, but a result of wrong illness beliefs, deconditioning, etc.

I am desperate to find another GP, but there is no information provided about any of them beyond a few patient reviews on some GP surgery pages in the NHS Choices website. I have asked in some Facebook groups and on the ME Assoc website. The only reply I had there which gave any help for 'ME Friendly' doctors, was from members of the same clinic group that Rheumatologist runs.

Where can I turn now? Does anyone have ideas? I need several matters addressed.... chest pains, deterioration in general condition, fatigue and mobility over the last few years and especially the last 6 months, possible interstitial cystitis or other urinary problem, and orthostatic intolerance, as well as P.E.M. of course. These are my most severe symptoms, but I have some other questions about things that have not been addressed which could possible give some answers. I rarely even contacted doctors over the past few years, as they were so dismissive. But I can't continue without having one at all, and I often feel I'd rather die than see anyone from this practice again after they' sort of invited me to leave.

My new carer company have been very helpful and they definitely believe I am ill and in need of appropriate care. They tried to set up an advocate to be assigned to me to help with this, but we were told that due to funding cuts, the advocacy service is now only to help with particular problems (I think meaning such as disputes and the like).

Any suggestions would be very gratefully appreciated.
 

Who Me?

Well-Known Member
This is really in the wrong place for anyone to see it I think.


Maybe move it to general treatmen or some other area more likely to be seen then delete this.

I also suggest you go back and add more paragraphs. Many of us cannot read a lot of text without breaks. I can't read most of this.
 

Joanna

Member
This is really in the wrong place for anyone to see it I think.


Maybe move it to general treatmen or some other area more likely to be seen then delete this.

I also suggest you go back and add more paragraphs. Many of us cannot read a lot of text without breaks. I can't read most of this.
Thank you. I could not see a logical place for it.

I will add more paragraphs and post in the area you suggested.
 

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