Chronic Fatigue....

[comfortzone]

I've had these episodes of fatigue that are debilitating and I can't for the life of me figure it out. When I've read a little bit about CFS they say that the fatigue you have does not get relieved with rest. Mine however does feel better with rest. I still am in a bad period of it - and a bit overwhelmed by it - but truly if I lay down mid-day for awhile - I will feel a bit better later in the day. Mornings are still slow going like so many here - the worst part of the day - then I get a bit of activity and productivity in - and then bam - by 2pm I'm needing to lay down. Why is that?

I have had times when it absolutely correlated with low blood pressure - but other times my blood pressure will ring in normal with adjusting medications. So then I think it's not med related...

I had mono as a teen and was hospitalized for a month - I was pretty sick - but they also put kids in the hospital a lot more in the late 60's. So then I wonder if it's Epstein Barr related.

I'm not at all depressed - but the lack of energy can just weigh on you. Especially when you can't keep up with your housework. I notice I'm pretty bad when I try to incorporate daily exercise into life. So when I exercise an hour on the cardio equip - say 20 min. on 3 different machines - that's it. I'm done. Period. Recuperation time is several hours of extreme tiredness.

Yet exercise is touted to help you feel better! It's not working.

What kind of doctor takes care of these issues - does anyone know? Is there anything you've tried to help it? I wonder if mine is a reaction to chronic pain? I don't know - it's kind of bothering me though for sure. I 'can' do things - but the price you pay is crazy.

I'm going to try to visit with family end of the month - I want to see how I function when trying to hide the fatigue behind the activities of visiting relatives... I wonder if it will be a distraction - and therefore a help - or if like last year - I have to excuse myself to lie down...

Thanks!

[issie]

I don't have chronic fatigue, but my sister does and she has orthostatic issues - her bp drops and she faints. She has been to the top chronic fatigue doctors in Salt Lake City, Utah and they try different things - but basically say there is no cure and they don't really know what to do for it. She tried low dose antibiotics, flornif and salt loading, antidepressants, just about everything we try as POTS patients. This last time she went, the doctor said - all your test are normal and I still have to tell you that you have chronic fatigue and we don't know what to do to help - there are no answers. We both as children of the 60's had what you described - they thought it was mono - but wasn't and we were in the hospital for weeks and missed over 3 months of school. We ran fever and were so tired we couldn't walk to the toliet. They never figured out what it was. In my searching trying to figure out what it all must mean. I realized that my sis and I and also a family friend (who was our age and in the hosptial with us) we all had the polio vacinne at the same time and got sick at the same time and got it from the same doctor. Our friend was male - and he has the same issues as us as an adult. I'm wondering if it wasn't something to do with that vacinne - maybe it's post polio syndrome or something. I had an alternative doc say she thought it could have been diptheria that some got it from that vacinne. So, there is a big question mark - just wonder if you had that vacinne too and was that when your problems started.

[Sallysblooms]

Are you just talking about Chronic Fatigue or Chronic Fatigue Syndrome?

I have had CFS for 18 years. There are good supplements that help a lot. Finding a good integratative doc is helpful. They understand supplements. DRibose and CoQ10 help among other things.

There are also CFS doctors but you just have to look and find good ones. Good luck!

[toddm1960]

I've carried a CFS diagnosis for over 10 years, and I have all of those same symptoms you talk about. I didn't feel the diagnosis covered everything so I continued to push for more testing, and in 2009 tested possitive for POTS and mitochondrial disease. At least now no one can tell me it's all in my head IMO CFS will turn out to be a mitochondrial disorder. Good luck finding the answers you're looking for.

[potsgirl]

I have a diagnosis of severe orthostatic intolerance, CFS, etc....Don't want to bore everyone. I am a fainter and have a lot of fatigue and a very low BP along with small fiber neuropathy. OUch!

[HopeSprings]

I was diagnosed with CFS - I meet a lot of the criteria, but not all. I am like you, rest helps. But it's very temporary ...and really, to be knocked out just from going to the grocery store? That's not normal. I have my morning burst of energy like you described and then it's over by mid afternoon. I am not sure why - possibilities are: dealing with a racing heart all morning takes its toll or maybe we just have less energy reserve (mitchondrial)? I was (am) skeptical of the CFS diagnosis, but once I learned that Orthostatic Intolerance (and other autonomic symptoms) are common in CFS, it makes me wonder if it's all one in the same. I am certain CFS is a real illness, but not sure that I have it. I'm hoping with all the research going on now, that a cause will be pinpointed, and hopefully a test developed to diagnose CFS. I am trying not to get too emotionally invested in this because if a test were developed and I tested negative... well, then what? I don't know how to tell you how to deal with it all - I don't think the answers are there yet. You could try finding a CFS sepcialist (whatever that means) and go over some of this with them.

Todd- you said you were diagnosed with mitochondrial disease? What testing reveals this and what does it mean?

[toddm1960]

I list it in my signature. I was diagnosed with a fresh tissue muscle biopsy, my breakdowns are in complex 1 and 3. So I don't produce ATP at a normal rate. UMDF.org and mitoaction.org have a ton of information on sypmtoms and testing. Let's hope soon they have a cheap and fast swab DNA test for mito, I think many of us have this as an underling cause.

[Lovebug]

I have CFS with a diagnosis from my doctor......only b/c I self diagnosed and asked her about it. I was told Fibromyalgia but when I experienced lots of CFS symptoms, my doc said....yea, well, they are the same. So I believe that Dysautonomia is the mother and all the subsets are the different things we have under it, such as IBS, CFS, POTS, etc. I have improved with a small dose of Beta blocker, very small dose of Celexa, & fluid loading. I also went to the chiropractor in the past, as well as on & off Vitamin D. I'm thinking of trying what Sally recommends and getting all my hormones tested so that I can start taking supplements if necessary.

BTW: can anyone tell me how to post information in the bottom of my posts?

Todd...what treatment do you use for Mitochondrial Syndrome?

[RockiesGirl]

BTW: can anyone tell me how to post information in the bottom of my posts?

I PMed you about this. Hope it helps!!

[Lovebug]

BTW: can anyone tell me how to post information in the bottom of my posts?

I PMed you about this. Hope it helps!!

Yes....thanks!!!!

[ramakentesh]

Most CFS patients have POTS or NMH. Most of the symptoms of CFS can be attributed to altered circulatory control found in POTS or NMH. My belief is that CFS as an entity is part of a spectrum of dyautonomic illnesses that also encompasses fibromyalgia where autonomic nervous system, circulatory and inflammatory symtoms predominate.

[toddm1960]

My treatment comes from the results of my cerebral spinal fluid testing and fresh tissue muscle biopsy:

Leucovorin

CoQ-10 (Q-Gel from Tiscon)

Creatine

L-Carnitine

D-Ribose

Riboflavin

[Sallysblooms]

You can learn all about CFS at Phoenix Rising Forums. It is a very complex problem.

[comfortzone]

Thank you everyone...

There's a text I recommend called Hypermobility, Fibromyalgia and Chronic Pain - Edited by Dr. Alan Hakim, Rosemary Keer and Dr. Rodney Grahame.

In it there is some great passages that talk about dysautonomic regulation as regards CFS, FM and joint hypermobility.... There overwhelmingly is evidence of dysautonomia within the three.... Absolutely fascinating work...

Neuromuscular physiology in joint hypermobility is described....Cardiovascular autonomic dysfunction is a common finding in CFS, FM and JHS...

Some tips for management involving supplements I haven't tried yet but in the book are listed as: Carnitine (with main side effect of it being hypertension, tachycardia and fever and maybe impairs thyroid function.

Q10 with SE's possible of N&V, diarrhea, skin irritation, irritablility, and increased sensitivity to bright light and flu-like symptoms. It may induce hypoglycemia and hypotension.

5-HTP not to be taken with other meds that effect serotonin levels with SE's possible of Nausea, Dizziness and diarrhea.

With all supps there's potentioal for negative interactions with other supps and meds - and specific dosages are not yet set to recommend for CFS, FM or joint hypermobility syndrome.

But under the care of your doctor or (my doctor) health care provider - I bet through their own anecdotal experience and research they could recommend some dosages...

Anyway - now I guess I know that this is really a common thing - this fatigue - and likely has it's roots in Cardiovascular Autonomic Dysfunction -- as well as chronic pain, deconditioning and all the other things ...

Talks about CFS and dysautonomia etc..

The book details out all the pathways of pain etc... so if you are a fan of research and books that speak of the science of how these things are interelated - I bet you'd like it - found on Amazon.

Thanks again for telling me your stories - I fit right in with the conglomerate/constellation of symptoms - but am a rookie at trying things that work

[juliegee]

Most CFS patients have POTS or NMH. Most of the symptoms of CFS can be attributed to altered circulatory control found in POTS or NMH. My belief is that CFS as an entity is part of a spectrum of dyautonomic illnesses that also encompasses fibromyalgia where autonomic nervous system, circulatory and inflammatory symtoms predominate.

I agree with Rama, but how does the compromised immune system play into this? Could that be what causes CFS- latent chronic EBV, CMV, or some ongoing infection from Lyme, rickettsia, etc? I came across an interesting theory that surmises that MCAD or MCS (multiple chemical sensitivity) can ultimately result from the chronic onslaught to our immune systems. MCAD/MCS is the immmune system's overreaction to harmless scents, foods, or everyday stresses. The already compromised immune system, in a last ditch effort, perceives benign influences as deadly & sends out the "big guns" in an order to protect us causing massive mast cell degranulation, etc.

Nowwhat!, there are other treatments out there involving long tern antiviral or antibiotic therapies. It's hard to find docs that understand and will properly deal with this!

[issie]

Most CFS patients have POTS or NMH. Most of the symptoms of CFS can be attributed to altered circulatory control found in POTS or NMH. My belief is that CFS as an entity is part of a spectrum of dyautonomic illnesses that also encompasses fibromyalgia where autonomic nervous system, circulatory and inflammatory symtoms predominate.

I agree with Rama, but how does the compromised immune system play into this? Could that be what causes CFS- latent chronic EBV, CMV, or some ongoing infection from Lyme, rickettsia, etc? I came across an interesting theory that surmises that MCAD or MCS (multiple chemical sensitivity) can ultimately result from the chronic onslaught to our immune systems. MCAD/MCS is the immmune system's overreaction to harmless scents, foods, or everyday stresses. The already compromised immune system, in a last ditch effort, perceives benign influences as deadly & sends out the "big guns" in an order to protect us causing massive mast cell degranulation, etc.

Nowwhat!, there are other treatments out there involving long tern antiviral or antibiotic therapies. It's hard to find docs that understand and will properly deal with this!

My sis tested positive for CMV - but the doc told her almost everyone would test positive. That doesn't mean it's active - just that you've had it. Also, she tried low dose antibiotics and antivirals - that didn't work either. But, just because it didn't work for her - you may be different. Just realize that antibiotics can cause other issues (Yeast problems). They really don't know what to do for it. They treat it, like we treat POTS - whatever symptoms comes up - they throw medicine at it and hope one of them helps.

[juliegee]

No, not everyone tests with high EBV or CMV titers. It's a bit of a cop out for a doc to shrug it off like that. If a patient has a high titer & NO antibodies to the virus- it's very telling. The immune system may be constantly bombarded- which can be wearing over time...hence CFS.

Dr. Peter Rowe at Hopkins is having very good results with antibiotic therapy. Long term, they are very safe as long as they are taken with a probiotic (at a different time of day.) My son has been on anti-B's for over a year now & is showing some impressive improvement. He has to have a CBC and ANA test every 6 months to ensure no side effects with antibiotics.

Medicine is not being "thrown" at my son. Dr. Rowe and many other top CFS docs surmise that an undetected Lyme or a similar infection may be behind CFS/POTS/NMH symptoms. Many patients have shown dramatic improvements. These are thoughtful treatments by highly educated caring docs. Yes, our symptoms need treatment, BUT it is a rare doc that is willing to attack the cause.

I urge you to research more & remain open, Issie.

[issie]

I urge you to research more & remain open, Issie.

Since CFS doesn't really apply to me (I haven't researched it) - what I have repeated is what my sister has said. In her experience it is that way for her. I agree, I think that if you test positive for these type viruses - I'd want to know they were dead and not active. She has tried everything that was offered to her and just went back last month hoping there was something new. He said, what I typed earlier. He didn't offer her anything else to try. For him to be one of the "known" specialist and having tried everything available for her and it not working - it's hard to be optimistic for an answer.

I think if you've had/have Lyme disease (like your son, for sure has/had) the treatments may be beneficial. But for someone who doesn't/hasn't tested positive for Lyme's and has never knowingly been bitten by a tick (like my sister), things she has tried have not been beneficial. She has researched it to her fullest ability and hasn't come up with any other answers and her doctors aren't offering any either.

[ramakentesh]

You can learn all about CFS at Phoenix Rising Forums. It is a very complex problem.

See that is the difference between the science of CFS and the science of POTS/OI. The science of CFS is all severely speculative, based on patient theory and studies printed in fairly unknown and questionable medical journals. On the other hand research in POTS/OI, in which it is stated that up to 80% of CFS patients have a common finding of POTS or NMH, is published in highly reputable journals like Circulation and the New England Journal of Medicine.

So no, its not really a complex problem. The complexity arises from patients having to - through being largely ignored by the medical fraternity - come up with their own theories which they now proclaim as proven fact. Theories like the Pall and the methylation cycle and XMRV are all highly theoretical. Highly speculative and unproven. Whereas the science behind OI - although still imcomplete - is at least acccepted by the wider medicine and does in many ways explain the full pathophysiology behind CFS.

XMRV is a very almost amusing story. An out of work medical researcher was working as a waitress when on the TV in her diner she saw a story about a girl that had CFS. She decided on the spot that her condition was being caused by a retro-virus, applied for a job and was given one on the basis of her theory and then found THE FIRST retrovirus she looked for in some highly inprobable percentage of CFS patients.

Id wager that most CFS, POTS and OI patients have abnormal immuno responses - the sympathetic nervous system and vasoreactive substances like TNF alpha have potent immuno-mediating effects.

All the same illnesses Im afraid.

[issie]

You can learn all about CFS at Phoenix Rising Forums. It is a very complex problem.

Id wager that most CFS, POTS and OI patients have abnormal immuno responses - the sympathetic nervous system and vasoreactive substances like TNF alpha have potent immuno-mediating effects.

All the same illnesses Im afraid.

OMGoodness, I've been saying this for years. I think that most all man's problems are inflammation related and the TNF response is one of the major contributors. If we could get inflammation out of our bodies - it might quit attacking itself.

And I totally agree, the thought that CFS, POTS and OI being the same illness. My sis. has CFS and OI severely. I have POTS and we both have FMS. So, I'd put FMS in the mix too.

[Sallysblooms]

They do overlap, but I didn't have POTS until I had surgery two years ago. I had CFS 16 or more years before. You don't have to have both, CFS sufferers do not always have OI either. The reasons for CFS and POTS can be so many. Not an easy answer.

[HopeSprings]

Is it possible that people with CFS can go on to develop POTS because of CFS? It was suggested I had CFS 10 yers before the POTS diagnosis. I really don't remember any heart symptoms the first 10 years of my illness and I think I would have noticed. It was like Bam out of nowhere - this barrage of new symptoms. Maybe if you have CFS it can progress into POTS? There has to be some relationship - there's just too much overlap. We can't be that unlucky to get hit with TWO rare diseases at the same time?

[Lovebug]

Yea Naomi I agree. I started with a change in my IBS (bad abdominal pain & diarrhea when I had always had constipation). Then came the extreme & overwhelming fatigue where it felt almost impossible for my body to keep myself alive. I had surgery for endometriosis in the middle of all this and my GYN said she'd test me if I wasn't better after recovering. She expected a change in my diarrhea, abdominal pain, & fatigue. Well.....didn't happen. She tested me and found extremely high EBV levels (although I was negative for CMV). My primary then said that I had fibromyalgia/CFS after ruling out a pheo, thyroid issues etc. Next, I started having Vital Sign changes......heart racing up to 140's, BP high sometimes, normal other times. Eventually I had a day where I could not sit up without my BP skyrocketing and a severe headache. Went back to my GYN for F/U and she recommended my Dysautonomia doc who is also a cardiologist. Since I found him, I have improved. I still wonder about my high EBV and the frequent sore throats I get, along with swollen lymph nodes in my neck. Surely something can be done.......?

[icesktr189]

With ME/CFS, there is said to be swelling in the brain stem. I think that would definitely cause neurological problems. Probably why some people have OI and POTS and why some dont.

"Myalgic Encephalomyelitis (abbreviated ME) is a chronic, inflammatory, primarily neurological disease that is multisystemic, affecting the central nervous system (CNS), immune system and cardiovascular system, the endocrinological system and musculoskeletal system".

It affects the nervous system. I think the problem is most people dont know WHY they have POTS to begin with. POTS is almost always a secondary problem. Some have MCAD, some have connective tissue disorders and others have ME/CFS. BUT just because you have ME/CFS, does not mean that you have to have POTS. Its just common occurrence with it.

I have heard from a lot of people who have CFS with no OI/POTS. I dont not feel these are the same illnesses, but they can definitely overlap symptoms.

Sore throat and fevers are very common with CFS, not with POTS/OI.

[issie]

Lovebug,

I was sent an article on the connection between endometrosis and mast cell activation disorder - can't find it right now. I found it really interesting - since I had endometrosis too. There are allot of us that have/had it. There has to be a connection here.

My sis also gets sick with colds, sore throat etc. She has CFS and OI. I hardly ever get sick, and have POTS. Wonder why such extremes - maybe one person has an over active immune system - the other an under active one. I know I also have vitiligo and that can be autoimmune - over active, attacking my skin. Hummmmmmmmmm?????????

Issie