Anyone Out There With Chronic Fatigue Syndrome?

[Anonymous]

Anonymous wrote:Nutrition, stretching, exercise and not over scheduling.

Exercise is so bad for CFS, unless you are maybe talking about walking for 30 seconds.

[Anonymous]

Everyone on this thread, especially the naysayers, should watch the documentary Unrest, on netflix. I watched it when I thought I might have Chronic fatigue. After watching that I wouldn't wish the illness on anyone. It's horrifying. OP I am so so sorry.

But they are getting closer to real diagnostic measures, and we pretty much know the mechanism that causes it. I think that some places have this test you can do where you do exercise on a bike for a while and they test to see how quickly you recover. People who don't have CFS recover over a few days but people who do have it get worse.

[Anonymous]

Anonymous wrote:Everyone on this thread, especially the naysayers, should watch the documentary Unrest, on netflix. I watched it when I thought I might have Chronic fatigue. After watching that I wouldn't wish the illness on anyone. It's horrifying. OP I am so so sorry.

But they are getting closer to real diagnostic measures, and we pretty much know the mechanism that causes it. I think that some places have this test you can do where you do exercise on a bike for a while and they test to see how quickly you recover. People who don't have CFS recover over a few days but people who do have it get worse.

This isn't true. The recent NIH study showed consistent abnormalities in immune response, brain activity, and neurotransmitters in the spinal fluid, as compared to a control group. But the "mechanism" that causes it is still unknown.

The study only included people diagnosed with post-infection CFS. So they had to have experienced a diagnosed infection that led to the CFS. So the hypothesis here is that CFS is being caused by some kind of immune malfunction, and possibly also abnormal brain processing, that prevents recovery from infection. This is a promising avenue of study but they are still in the early stages of it.

[Anonymous]

My Magnesium and D levels were extremely low. Mag malate, D3, Epsom salt baths, sun helped a lot. D Ribose did a lot for energy until I recovered.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Move to the couch.

Yeah, sorry OP. I have it, and don't have any magic pills for you. I hope someone else can offer something better to help us both!

No joke, this is what I do. I think think Chronic Fatigue is a real syndrome. Its the doctor blow off as they don't want to take the time to figure out what's wrong with you.

It's definitely "real." Just because we don't have the research to show what causes it doesn't mean it isn't real. My guess at this point is that it is metabolic (likely the next huge frontier in medicine). Fortunately my doctor doesn't blow it off; she knows I have CFS. There just isn't great treatment. I even tried Modafinil but it made me manic.

NP. Can you please provide your doctor's information? Or can anyone else recommend a specialist that will diagnosis CPS? TIA for any leads.

Bumping the request for a specialist/dr willing to diagnose and help with a treatment/maintenance plan.

[Anonymous]

Anonymous wrote:It is almost always Lyme in this region.

+1

Also, OP, do you suffer from allergies ? If so, is moving to another region of the country doable ?

I know nothing about CFS, but wish you well.

[Anonymous]

Anonymous wrote:My Magnesium and D levels were extremely low. Mag malate, D3, Epsom salt baths, sun helped a lot. D Ribose did a lot for energy until I recovered.

D ribose gave me bad side effects, like dizziness, heart palpitations, weakness.

[Anonymous]

Anonymous wrote:Is this something one can actually get diagnosed for? If so is there any point? I don’t believe it qualifies as a disability and I don’t think any treatment is available, but perhaps I’m wrong.

Yes you can get diagnosed and yes it qualifies as a disability.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Move to the couch.

Yeah, sorry OP. I have it, and don't have any magic pills for you. I hope someone else can offer something better to help us both!

No joke, this is what I do. I think think Chronic Fatigue is a real syndrome. Its the doctor blow off as they don't want to take the time to figure out what's wrong with you.

It's definitely "real." Just because we don't have the research to show what causes it doesn't mean it isn't real. My guess at this point is that it is metabolic (likely the next huge frontier in medicine). Fortunately my doctor doesn't blow it off; she knows I have CFS. There just isn't great treatment. I even tried Modafinil but it made me manic.

NP. Can you please provide your doctor's information? Or can anyone else recommend a specialist that will diagnosis CPS? TIA for any leads.

Bumping the request for a specialist/dr willing to diagnose and help with a treatment/maintenance plan.

I do not have CFS but have a chronic disease that includes a lot of fatigue and pain. When I saw a rheumatologist, he evaluated me for fibromyalgia. I don’t meet the criteria. I wonder if he would have diagnosed CFS if he thought I had it. He was with Rheumatology Associates downtown.

There is also a Chronic Fatigue Syndrome clinic at Johns Hopkins, I believe. I’d go there if you can get in.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Is this something one can actually get diagnosed for? If so is there any point? I don’t believe it qualifies as a disability and I don’t think any treatment is available, but perhaps I’m wrong.

Yes you can get diagnosed and yes it qualifies as a disability.

But no, CFS is not going to get you Social Security disability benefits.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Move to the couch.

Yeah, sorry OP. I have it, and don't have any magic pills for you. I hope someone else can offer something better to help us both!

No joke, this is what I do. I think think Chronic Fatigue is a real syndrome. Its the doctor blow off as they don't want to take the time to figure out what's wrong with you.

It's definitely "real." Just because we don't have the research to show what causes it doesn't mean it isn't real. My guess at this point is that it is metabolic (likely the next huge frontier in medicine). Fortunately my doctor doesn't blow it off; she knows I have CFS. There just isn't great treatment. I even tried Modafinil but it made me manic.

NP. Can you please provide your doctor's information? Or can anyone else recommend a specialist that will diagnosis CPS? TIA for any leads.

Bumping the request for a specialist/dr willing to diagnose and help with a treatment/maintenance plan.

I do not have CFS but have a chronic disease that includes a lot of fatigue and pain. When I saw a rheumatologist, he evaluated me for fibromyalgia. I don’t meet the criteria. I wonder if he would have diagnosed CFS if he thought I had it. He was with Rheumatology Associates downtown.

There is also a Chronic Fatigue Syndrome clinic at Johns Hopkins, I believe. I’d go there if you can get in.

Thank you. Unfortunately, the Johns Hopkins website says the clinic is only for adolescents and young adults. Will look into your other suggestion. Other suggestions welcome too!

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Move to the couch.

Yeah, sorry OP. I have it, and don't have any magic pills for you. I hope someone else can offer something better to help us both!

No joke, this is what I do. I think think Chronic Fatigue is a real syndrome. Its the doctor blow off as they don't want to take the time to figure out what's wrong with you.

It's definitely "real." Just because we don't have the research to show what causes it doesn't mean it isn't real. My guess at this point is that it is metabolic (likely the next huge frontier in medicine). Fortunately my doctor doesn't blow it off; she knows I have CFS. There just isn't great treatment. I even tried Modafinil but it made me manic.

NP. Can you please provide your doctor's information? Or can anyone else recommend a specialist that will diagnosis CPS? TIA for any leads.

Bumping the request for a specialist/dr willing to diagnose and help with a treatment/maintenance plan.

I think this is an old list but it might still be helpful. https://cfsnova.com/practitioners.html

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Move to the couch.

Yeah, sorry OP. I have it, and don't have any magic pills for you. I hope someone else can offer something better to help us both!

No joke, this is what I do. I think think Chronic Fatigue is a real syndrome. Its the doctor blow off as they don't want to take the time to figure out what's wrong with you.

It's definitely "real." Just because we don't have the research to show what causes it doesn't mean it isn't real. My guess at this point is that it is metabolic (likely the next huge frontier in medicine). Fortunately my doctor doesn't blow it off; she knows I have CFS. There just isn't great treatment. I even tried Modafinil but it made me manic.

NP. Can you please provide your doctor's information? Or can anyone else recommend a specialist that will diagnosis CPS? TIA for any leads.

Bumping the request for a specialist/dr willing to diagnose and help with a treatment/maintenance plan.

Marie Steinmetz, MD

[Anonymous]

Anonymous wrote:

Anonymous wrote:My Magnesium and D levels were extremely low. Mag malate, D3, Epsom salt baths, sun helped a lot. D Ribose did a lot for energy until I recovered.

D ribose gave me bad side effects, like dizziness, heart palpitations, weakness.

That's a shame, side effects for all these things are sadly more likely when your nervous system has taken a hit. CoQ10 was helpful and gets a lot of recommendations too.

[Anonymous]

Anonymous wrote:Going on thyroid meds turned me around,

My TSH needs to be closer to 1.5. When it’s 3.0+ I feel like crap and am exhausted.

I finally found a dr will would give me meds with subclinical hashimitos—all the others wanted to wait until my Tsh got high.

Same. Some doctors believe that anything under 5 is “fine,” even if you feel like crap. My current Endo keeps mine around 1.5.