Chronic Fatigue

[yuliya]

Who has been diagnosed with chronic fatigue and what have you tried to make it better (medication and vitamins)? Do you work? What are your symptoms?

[icesktr189]

Hi there! Are you talking about the symptom or the syndrome? The syndrome itself has a lot more symptoms than just chronic fatigue and is a seperate diagnosis. I got mine about three years after pOTS.

Mine is from chronic EBV. I have used anti vitals and coq10. Also use LDN. Just need to work up to a theraputic dose. Also anti depressants have helped my fatigue and dizziness in the past.

Sorry if you already knew the differences, there are many people who don't. good luck hope you find relief soon!

[icesktr189]

Oh forgot to add that horrible fatigue, sore throats, swollen lymphnoids, and fevers were my symptoms

[yuliya]

I really don't know the difference. My cardiologist diagnosed me with POTS this January, I have had symptoms all my life, but they became worse this year. Today he said that he thinks that I have Chronic Fatigue Syndrome, so I really don't know what it means, he just wants me to see a specialist for it. Thanks for the info

[HopeSprings]

I have been diagnosed with it, but wasn't given any reasonable treatment for it. The Dr. who diagnosed it wanted me to take some powerful sleeping pill (forget the name, but it's the "date rape" drug) -- I said uh, no thanks. He seemed to think the "POTS" (or orthostatic intolerance or dysautonomia) is just a symptom of the larger picture, which is actually CFS. Apparently a lot of people with CFS also have autonomic nervous system symptoms.

[yuliya]

yeah, thats what I understand to, a lot of people with POTS do have CFS and the other way around, but that doesn't explain why so many like me have POTS all my life and the fatigue has only recently became a problem. I'm sorry you have not been able to find proper treatment

[roxie]

I wonder how to tell the difference too? Maybe Sally can chime in ? She has CFS first & then only recently POTS.

[stacdliw]

I was diagnosed with Chronic Fatigue Syndrome about 14 years ago. My symptoms were debilitating fatique, fibromyalgia, swollen lymph nodes, sore throat, unrefreshing sleep, concentration problems, night sweats, and frequent illnesses( mainly upper respiratory). With CFS, you can often pinpoint the exact day that you contracted the syndrome and I remember mine exactly: the day before Thanksgiving 1994. Basically, with CFS you feel like you have the flu but you never recover.

Back in 1994, CFS still was not highly accepted as a bonified medical disorder. It was called the "yuppie flu." So, I was treated on a symptom by symptom basis. Luckily, there have been strides in the management of the disorder. I now take 60mg Cymbalta twice daily for fibromyalgia and that has been a godsend! Over time, the swollen lymph nodes, night sweats, frequent illnesses, etc... have decreased.

However, just last September I was diagnosed with Autonomic Neuropathy and I suffer from many of the same symptoms as CFS: debilitating fatigue, memory/concentration problems,etc... As a matter of fact, my neurologist believes CFS was the beginning of my AN!

Good Luck with the management of your CFS. My suggestion would be to go to a rheumatologist for diagnosis and management for the disorder.

Bev

[stacdliw]

I forgot to add that I was diagnosed with AN in February 2008. I had no symptoms of POTS at that time. I was referred for AN testing by my GI ( I also have moderate gastroparesis) becaused of obstipated constipation which is a symptom of AN.

I began having minor problems getting out of breath when I walked a short distance by August 2008. Cardiology and pulmonary tests were normal. I just thought I was out of shape as I hate to exercise.

By January 2009, I was experiencing extreme difficulty with shortness of breath whenever I walked. Again, with normal tests I didn't know what was going on and didn't even know what POTS was. Finally, in January of 2010 my GI referred me to Vandy and I was finally diagnosed with POTS in September 2010.

Both my GI and neurologist believe that this is the progession of my disorder: CFS to Gastroparesis(which was caused by undiagnosed AN) to POTS.

Overtime, both the CFS and gastroparesis has improved. Both my GI and neurologist believe that none of my disorders will ever completely disappear, but over time, will improve. Right now, my AN and POTS is quite dibilitating. I am hoping that, with time, it, too, will improve.

[icesktr189]

I really reccomened the LDN. It is truley awesome stuff for CFS. Unfortunately does nothing for POTS however (for me at least )

I have found treating CFS to be a lot easier than POTS. I don't feel mine are directly related. I cane down with POTS years before CFS. However I might have pulmonary arterial hypertension so maybe that's why I am exhausted.

I did find treating the POTS helped tons with the fatigue. Do a Google search of ME/CFS

[firewatcher]

Over a year ago, I actually asked my doc to let me try GHB after investigating its mechanism of action (something about GABA.) While he thought it might work, he still said no. I haven't pursued it, so I don't know if it would help, but it isn't an "off the wall" suggestion.

[ramakentesh]

its a diagnosis of exclusion - in that they exclude evertything testable and then dump you in that basket with the suggestion its all psychological.

[Sallysblooms]

I have had cfs for 18 years. I will write more later.

[Leigh]

I've suffered from CFS since I was diagnosed with POTS 6 years ago. 2 years ago, I was on a regimen that made POTS almost non-existent. Alas, I have fallen off that wagon and I have been working back to a strict regimen of exercise and meds for a few months.

I just happened upon Dr. Boynton; a local Chiropractor/Supplemental Nutrition Dr in Mason, OH. He put me on a series of supplements and regular massages & adjustments. It takes a while of regular appointments, but I feel like I'm 22 again! I'm now able to at least work out for 30 minutes before my symptoms make it too difficult. I know I'm on the right track -- I recommend this for people who feel they have tried everything and nothing has worked.

CFS and POTS has been connected to Adrenal Fatigue. It makes sense in my case since my POTS was caused from traumatic events during my pregnancy.

[Sallysblooms]

As I said, I have had CFS for 18 years, no I do not work. Stay at home wife.

I started with POTS two years ago. I take many great supplements three times a day. I have two doctors that tell me what to take, brands and dosages.

I am fighting the Epstein Barr virus with good supplements for my immune system. Sleep is also important for repair.

I can sleep very well now with my hormones balanced and good supplements. I get blood testing every few months. My vit D level was awful, that is now at a good level thankfully. I am slowing improving with POTS and CFS. I just want to function better, I know I will always have both.

Having the B12 level checked with CFS is important.

My symptoms were vertigo, severe exhaustion that sleeping never helped, dizziness. Those were the worst along with noise sensitivity. 5htp is very helpful for seratonin and sensitivity, sleep etc. A good doctor should test many things with good blood tests so they can help guide with supplements.

[flower]

I was diagnosed with ME/CFS first, then finally the POTS.

I too have had orthostatic intolerance as far back as I can remember. The fatigue thing never fitted with me, but perhaps it's just normal and so I don't recognise it too well.

My first problems (aside from the not being able to stand up still and fainting, which go back to my childhood) were pains throughout my body and swollen glands/feeling poisoned. That happened when I was 18, but I ignored it and continued obsessively exercising at the time. Just progressively downhill from there until I was diagnosed with ME in my mid twenties and a couple of years after that, POTS.

Makes you wonder which might have caused which.

[rach73]

Hi,

All of those who have been diagnosed with CFS / ME please take a look at this website

http://www.hfme.org/methemedicalfacts.htm

This site is endorsed by two of the world leading experts on ME. It explains that CFS is a misdiagnosis and that ME is a real condition that can be tested for Yes tested for. It should not be a diagnosis dished out by Drs who can't work out what is wrong. Unfortunately there is still such a stigma to the diagnosis of ME as one previous poster said it has been known as Yuppie Flu.

There is a massive overlap between ME and dysautonomia many of the symptoms of POTS / OI are the same in ME.

I am very passionate about getting rid of the diagnosis of CFS and using the proper diagnostic name as given to it in 1969 by the world health authority Myalgic Encephalomyelitis.

My sister has had ME from the age of 14 she is now 34. It came on after an acute viral illness - she had problems with her autonomic nervous system before becoming ill with ME.

This website is run by a young lady called Jodie Bassett whose life has been decimated by this condition.

I am not saying that anyone here doesn't have ME or CFS - I just would like you to be aware of this site as it gives you so much information. How to get a diagnosis etc, what the disease is and what it isn't and why the diagnosis of CFS needs to be got rid of. Plus it clearly explains the symptoms and that its much more than being tired all the time.

Rach

[Sallysblooms]

You can test for CFS. Spinal fluid, news on TV just this week. I just hope it embarrasses the doctors that didn't think it was real. Shame on them.

Many people with CFS have POTS.

[Sophia3]

was dx with CFS in 86 when it was called Perpetual Adult Mono by am Immunologist I saw..then they changed name to CFS as it was more than EBV..then Johns Hopkins found the ANS connection (as had the late Dr. Streeten for years but didn't know Dr. David Bell was studing CFS pts with O.I.)

Anyway, sleep centers found I have alpha delta sleep disorder which means very LITTLE refreshing sleep...so vicious circle for decades. Very complicated this CFS umbrella just like ANS issues.

But any documentation in tests is always a good thing though many many SERIOUS isssues are dx by exclusion of other things...sigh

[icesktr189]

I was told i have CFS. After the epstein barr virus, it was a diagnosis. I am totally confused with the ME thing. Some people say CFS and ME are completely different and other say its called ME/CFS.

I fit the CFS symptoms. The ME sound different. I am getting an MRI done this week.. if it was ME would it show up in it?

ALL this is confusing to me! I dont know if i should talk to my doctor about ME when he already diagnosed me with CFS? he is going to think im crazy..

[icesktr189]

I was told i have CFS. After the epstein barr virus, it was a diagnosis. I am totally confused with the ME thing. Some people say CFS and ME are completely different and other say its called ME/CFS.

I fit the CFS symptoms. The ME sound different. I am getting an MRI done this week.. if it was ME would it show up in it?

ALL this is confusing to me! I dont know if i should talk to my doctor about ME when he already diagnosed me with CFS? he is going to think im crazy..

[icesktr189]

I was told i have CFS. After the epstein barr virus, it was a diagnosis. I am totally confused with the ME thing. Some people say CFS and ME are completely different and other say its called ME/CFS.

I fit the CFS symptoms. The ME sound different. I am getting an MRI done this week.. if it was ME would it show up in it?

ALL this is confusing to me! I dont know if i should talk to my doctor about ME when he already diagnosed me with CFS? he is going to think im crazy..

[Lovebug]

I was told i have CFS. After the epstein barr virus, it was a diagnosis. I am totally confused with the ME thing. Some people say CFS and ME are completely different and other say its called ME/CFS.

I fit the CFS symptoms. The ME sound different. I am getting an MRI done this week.. if it was ME would it show up in it?

ALL this is confusing to me! I dont know if i should talk to my doctor about ME when he already diagnosed me with CFS? he is going to think im crazy..

I agree...I had an MRI which showed no signs of ME (I think there are lesions) whereas I have the typical signs of CFS. I was diagnosed in 2010 (almost exactly a year ago). The doc told me it was fibromyalgia and when I inquired about CFS with my high EBV levels, frequent sore throats, and swollen lymph nodes she said, "yea, well they are the same". It is so frustrating but the good thing about that doctor is that she believed in Fibro (whereas most don't). But, a month later when I started having orthostatic changes in my vital signs (POTS symptoms) my doc didn't know what to do and sent me to a neuro. The neuro told me I had abdominal migraines even though he said other doctors would likely disagree with him (& my GI DID disagree with him, LOL). So through all this maze I've been through this past year, this is my take: Dysautonomia is the mother umbrella of all these disorders. Under which I have the following: IBS, POTS, CFS, Fibromyalgia. So some here have EDS, POTS and some have a different combination but we are all victim to Dysautonomia.

What helped me initially was Vitamin D (as my levels were low) & the chiropractor. Over the summer I got diagnosed with Dys and started fluid loading and a low dose Beta blocker. Later started Celexa for my neverending abdominal pain (it has helped). I hope this helps you...let me know if you have any questions.

[icesktr189]

Thank you lovebug!!

I just freaked a bit because while the CFS diagnosis *****, i agreed with it. I really do match perfectly to the symptoms. They started right after the EBV diagnosis too. (my doctor even warned me that it could turn to CFS before i got it)

Then i saw the ME page and it is talking about brain problems and swelling and even cases of death from it. The symptoms are also a bit different than CFS. Also said that it was no way related to Epstein Barr Virus, which i know for me, it brought all this on.

So that leads to the confusion when people say ME/CFS, because in my opinion i have CFS not ME. I know people will argue about the meanings, but my symptoms fit they CFS.

[Lovebug]

Yes and what surprised me most about having such a high EBV level is.....there was NO TREATMENT!!! I mean, shouldn't we try to control the viral load so that other opportunistic infections do not bombard us? But nothing! My doc wanted to put me on Savella for extreme exhaustion but I heard horror stories of the SE. And now (knowing that I have extreme med sensitivity) I'm so glad I refused to start it. When I started my Celexa (which my cardiologist prescribed since he is treating my Dys)I began with such a low dose that I had to get liquid form. Once I tried to double the dose but I felt so funny & loopy so my doc told me to titrate is S-L-O-W-L-Y! Now I'm taking 2.5mg of the original 10mg that was ordered.

Personally, I feel ME is a similar or overlapped entity to CFS. Kinda like all Dys pts have variations of diseases that cause our ANS to be dysfunctional. Honestly, it is all a big mystery to the medical community. If it wasn't, they'd have us all figured out by now!