Introdução e Recursos sobre CFS/ME

Cérebro e nervos
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This is a discussion where users can post their signs and symptoms, treatments, history etc. There is also a list of useful resources links etc below. If any user has any suggestions about additions to this please send me a Private Message rather than replying here or trying to post links in this thread. Any links added will have to conform to the forum rules.

Patient leaflet on CFS which includes a tab for Clical Trials (second link).

https://patient.info/health/chronic-fatigue-syndromeme

https://patient.info/health/chronic-fatigue-syndromeme/clinical-trials

PatientPlus article on CFS written for GPs. Includes references to more in-depth articles including NICE Guidance.

https://patient.info/doctor/chronic-fatigue-syndrome

The Hummmingbirds` Foundation for ME.

http://www.hfme.org/

CFS/ME - A Primer for Clinical Practititoners from Members of the IACFS/ME.

http://www.rmcfa.org/f/IACFS_Primer.pdf

Other groups in the forums that may be of interest.

Fibromyalgia https://patient.info/forums/discuss/browse/fibromyalgia-syndrome-909

Osteoarthritis https://patient.info/forums/discuss/browse/osteoarthritis-1632

Rheumatoid Arthritis https://patient.info/forums/discuss/browse/rheumatoid-arthritis-1968

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Thank you very much, very helpful as a one point note, can we also add links to uesful services onto here too. if they are advisory or scientific reports and not advertising for various clinics? 

3

Hi Andrew,

Anything can be added as long as it meets the criteria for adding links and would be useful for the group. If you have suggestions please PM me. 

4

ok will do and thank you

5

I have not been diagnosed with CFS/ME because my doctor doesn't believe in it. It's very likely I have it.

Symptoms

~Severe fatigue

~headaches

~joint pains

~nausea

~anxiety

~low blood pressure

~jaundice

Ive been tested for celiac, Crohn's, parasites and cysts then my doctor decided I was 'lying' because he didn't find anything.

History

~Anxiety

~Irritable bowel syndrome

Treatment

~swimming physical therapy 

~antidepressants

 

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Hi depending upon your why you have low BP and nausea and headaches your doctor should be made aware of this? Do you have EDSIII called hypermobility syndrome this could cause most of your problems. If not you may have an autoimmune problem. Has your GP ever tested your bloods to see if they are normal. If they are and your inflamitory markers are normal then explain you are double jointed and that could be the cause of your anxiety. Swimming will help if you are double jointed as you need to stay active. I suggest your ask him to refer you to rheumatology if you are. They will help you to understand the best medication for your problems. Antidepressants are good but you do need to have a blood test to ensure that you have nothing else going on other than being double jointed. 

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Hi! My doctor doesn't really want to test me for anything as he sees me as a liar. He's the sort of guy if you can't find it in the blood test; you're faking. Honestly, I really don't want to go back. I'm double jointed but he never mentioned ehlers-danlos. He knows I have postural low blood pressure and made me do an ecg; but no stress test. 

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Hello there !. Thank you for corecting my spelling. I appreciate this.

Another important site is the Stonebird and The Grace Charity

Many thaks.   Mitty.

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Hi, I am a Kiwi who has suffered chronic fatigue symptoms since my daughter was born 24 years ago. They have worsened with menopause. I thought I had found my answer when my B 12 was found low, but supplementation didn't help. Then my thyroid functions changed to abnormal, with thyroid antibodies. I started on levothyroxine a year ago and my symptoms got worse, more brain fog, more fatigue and more joint pain. After researching on the net I discovered that some genetic deficiency of deiodinase enzymes exists in some people, and can be turned on by pregnancy or viral illness. My Mum developed ME in her fifties before me, so this seemed a possibility. This causes inadequate conversion of thyroxine into the active hormone T3, blood thyroid functions can appear normal. Porcine thyroid extract being a good treatment. I hunted for a GP who would prescribe this and started six weeks ago. My brain fog cleared immediately, my joints stopped aching within a week and my energy levels are improving in leaps and bounds. I wonder how many people have this condition. There is a genetic test for these genes now available in UK (google deiodinase genetic test). 

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Does anyone share these symptoms? Any help is appreciated!

I. Lactic acid “burning" sensation (muscles are easily exhausted) in EVERY muscle in the body with simple tasks (brushing hair, talking/singing for a long time, swallowing, walking up the stairs). Progressive.

II. Persistent brain fog/cognitive decline. (head pressure when thinking hard for more than 30 min)  

III. Periods of various symptoms like, come & go for brief period of time (lower left kidney flank back pain, burning sensation peeing, constipation, occipital neuralgia, burning sensation in neck).

IV. Chronic Prostatitis (Lower back ache, urine incontinence, rectal pain, lower right back flank sharp pain/ache; possible triggered by certain foods)

V. Skin is extremely sensitive (easily ticklish everywhere)

VI. Crepitus (joints crack, gravel, grind). Ex: bicep curl w/o weights, sitting down and leaning. Progressive

VII. Sternum tightness (inhale, exhale).

VIII. Hands and feet can experience pins/needles or coldness if a certain position is held for a short amount of time.

*14 yrs old: Frequent urinary symptoms, Frequent constipation, 2 week flu, eye twitch began.

15-17 yrs old: Progressive muscle exhaustion, brain fog. I did play sports, but I noticed I wasn't feeling "normal". I tired out easily.

I'm a male in my early 20s and have dealth with these symptoms (gradually some new symptoms get added) for the past 7 years of my life. Doctors don't know what's wrong with me except to diagnose me with CFS. 

I also had a chronic H Pylori infection, that's now gone. Even though my activity levels are reduced 50 percent, I can still walk around and go to work full time, but these symptoms, especially the muscle fatigue is bothering me so much. I was an active boy before 15 years old, doing so many things.

11

I am assuming you had to take at least one strong course of antibiotics for the H pylori. I had to take several courses to get rid of my H pylori ulcer, and then ended up with an intestinal yeast infection.  I was still battling that  in Dec. 2010 when my mother and I came down with flu-like symptoms, diarrhea, nausea, debilitating fatigue etc... After a colonoscopy and biopsies in Feb. 2011,  my mother was  officially diagnosed with a chronic enterovirus infection. We have less intestinal symptoms but everything else is still the same. It sounds as if at least part of your problem could be yeast syndrome in addition to a possible virus.

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Just discovered your post. I sent this to a post viral sufferer, having struggled on and off with post viral for many years. My basic advice is taking a treatment of good bacteria. As mentioned, I've had the same issue for years. After every flu, I'd get all the traditional symptoms. One thing I used to respond with was an actimel which people laughed at (placebo!). None the less it helped. Recently I upped the anti and tried a course of Bioglan Proobiotics. Immedate impact. No more symptoms. Just thought I'd passed this message on...! Best wishes JN

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Hi Sally,

i have had fatigue 15 yrs. housebound and bed bound a lot of the time. I'm 59. It started gradually but progressed gradually .

i get no refreshed sleep. I use sleeping pills but they don't help ,

Any ideas would be much appreciated.

Gerry

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Hello,

My name is Brittany Kesler, M.S. I am a doctoral student in the general psychology program at Walden University, and am currently conducting my dissertation research on individuals living with Chronic Fatigue Syndrome who work full or part-time as entrepreneurs, or are in some way self employed. The study seeks to explore the experiences of participants, and learn about the challenges they have faced, the benefits they have garnered from taking on this work, and how it has impacted their overall well- being and quality of life. Ideally it will provide valuable information for individuals diagnosed with Chronic Fatigue Syndrome who might be interested in taking a similar path. I have Chronic Fatigue Syndrome myself, and am aware of the many challenges faced with this illness. In stating this, I am committed to helping this community thrive in search for personal and professional fulfillment.

Currently, I am in search for participants who are diagnosed with Chronic Fatigue Syndrome and are self-employed and/or an entrepreneur. Participation in the study involves a 30 to 60 minute phone interview, with 12 questions. All participants’ names and information will be de-identified, and questions are rather unintrusive. All interviews are on a voluntary basis.

If you are diagnosed with Chronic Fatigue Syndrome and are self-employed and/or consider yourself an entrepreneur, please consider participating. Please reach me anytime at ... or by phone at ... for further information.

Your support in participating in this interview would be greatly appreciated.

Many thanks, Brittany Kesler

 

Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service.

http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

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I have had CFS for 91/2 years and have been actively self employed in the art field

but have suffered greatly. I would be willing to be interviewed.

16

Hi, long story short I’m awaiting my diagnosis of ME, it’s gradually getting worse over the past few days up until now I’ve had it very mildly .. but I’ve since  been experiencing pressure behind my eyes every time I try to concentrate on anything.. looking through the window or even trying to watch the tv I’m struggling to ignore the pain.. admittedly it’s all I’ve been able to do recently as I’m too exhausted to move .. don’t know what else to do or try I’m really at a disappointing stage of my diagnosis ..(as if it weren’t disappointing enough) any reccommendations from anyone??

Thanks

Meg  

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Obviously temperature control is a symptom of ME but I haven’t read or heard of anyone besides myself suffering with it .. is or has anyone suffered with it? Any help with how to deal with it? It’s 5 degrees currently where I live in the Uk and I have no heating on, my windows open and can’t possibly wear any less😅🙈 send h e l p pleaseeee 

Meg, 20, yet to be diagnosed. 

18

i struggle with this too. Body does its own thing regardless of external temperatures. As yet I have not found a solution apart from being prepared to put a coat on in a warm place and take off as much as possible conversely. When I did work it drew a lot of comments but...... I can only say you are not alone in this... .  

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At least I’m not the only one to suffer with it.. something to bring up to my specialist when we meet on the 28th. Thank you for your response x

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Hi there. I know this is soooooo old but please could you let me know if you’ve had any progress from this? I am EXACTLY the same. 39f from the UK. Dr’s no help :pensive_face: