Chronic Fatigue Syndrome Support Group

Chronic Fatigue Syndrome (ME/CFS) describes a sense of exhaustion and post-exertion malaise, even when you have gotten enough rest and sleep. The disease is characterized by six months of incapacitating fatigue experienced as profound exhaustion and extremely poor stamina, and problems with concentration and short-term memory. The cause is unknown, but it is a...

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isislola 05/29/2018

Hello, I am a 46 year old female that just came across this board out of sheer frustration dealing with my symptoms. For the last 8 months, I’ve been plagued by a extreme fatigue not helped by even sleeping 12 of more hours, muscle and joint pain, involuntarily jerks of my arms and legs, and brain fog. After telling one PCP all of this and being brushed off and told I had tendinitis, I switched PCPs. My new PCP has run literally every test known to man on me, including: MRI brain, nerve conduction studies on arms and legs, and countless labs, none of which have shown any possible cause for my symptoms. Recently, after walking about 2 blocks at a leisurely pace, I was so sore and exhausted the following days I could barely move. My PCP has still not referred me to a specialist and instead continues to just schedule follow-up appointments with him that are further out. I work in a medical profession that requires me to take vitals, etc. I have not been able to work for a week. Instead I sit on the couch and cry. A LOT. Any advice would be so very appreciated. At the very least, reading some of the posts here make me feel a little less alone. Thank you for reading all of this, many, many warm hugs of gratitude. XO

Bluebonnet08 08/26/2018

Did you get a Lyme test? The involuntary jerking is a potential sign of that I think.

Bernardus 09/27/2018

I am also new to this disease...so new in fact that I have not been "officially" diagnosed. You have to have symptoms for 6 months apparently. I did tons of research and found some specialists in the US. The Hunter Hopkins Center in Charlotte NC and also The Institute for Neuro Immune Medicine in Davie Fl. There is also a doctor in New York and Nevada. I am sure there are others. We did not wait for a referral; we just called and were incredibly lucky that they had a cancellation and were able to get me in. I went to Florida and while I am still going through lots of medical testing it was well worth the trip. The doctor agreed with the supplements I have been taking, increased some, added electrolytes and salt/potassium supplements to my regimen, told me to be dairy and gluten free. She said pacing is very important. I also am eliminating or severely limiting Sugar, caffeine, alcohol, NutraSweet or artificial sweeteners, nightshade vegetables and tobacco. Most of that was never an issue for me but giving up sugar and red wine was a little tougher. The good news is that once the sugar is out of your body (or at least my body) you don't crave it anymore. Decaf herbal tea instead of coffee...you learn to make it work.

She also said that like with many diseases early intervention is helpful She also has me on low dose naltrexone. I think all of these things combined are helping me. If you have not already watched the Netflix Documentary called Unrest I would suggest it. Dr. Nancy Klimas who is in charge of the Institute for Neuro Immune Medicine in Florida runs that practice and is on the documentary so you can see her and get a feeling for the type of compassionate person that she is. That is why we chose to make the trip to Florida.

I wish you the very best and if I can be of help please reach out. I'm new to all of this, but I will share what I have learned.

SadieBee 09/27/2018

Hello there, I am sure you are finding reassurance in reading these reviews that we all, at some level, have or are going through the process you are embarking on.
Medical Drs are idiots. My advice: Find a functional medicine Dr., do yoga/meditate even if you can't include the stretches, find selfish compassion and love, surrounds yoirslef with ppl which support you no matter id hey don't understand and avoid those that don't, clean up your diet as much as you can. Everyone is different as you notice above, so you will need to start slowly with trial and error. My inflammation decreased a lot with the removal of meat. All the others (gluten, sugar, grains, high sugar fruits, dairy, eggs, coffee, alcohol, ....) showed some improvements also.
Lots of reading for fun and for education o your condition. Agreed with the above comment to be bold and nit bullied while you start healing. You will heal. You just have to believe. In the end don't criticize or blame yourself.
Xoxo

Ks07005 12/14/2018

Your story spu ds similar to mine. If this has t already been done ask your PCP for a mono test- turns out I have chronic Epstein Barr virus. I'm on my way to remission- read medical medium, it's a little out there but many of the dietary advice worked for me when nothing else did.

isabelle1954 01/02/2019

This is all very good advice. I would add that cooked or even fresh Garlic(if you can tolerate it) really helped my energy. I am still able to walk distances, only
if I don't walk quickly, otherwise I suffer pain.

I hope you will feel better soon.

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