HELP! EXTREME SICKNESS AFTER WORKOUTS

Exercise intolerance has been one of my on-going symptoms. In my case the CFS type symptoms are due to Lyme. Most descriptions of CFS have "post exertional malaise" lasting a day or more as one of the basic symptoms. It's been very difficult cause I once was very active. I've only ever found one article that proposes a mechanism for the exercise intolerance. The article calls it "exercise one day, sick for three". I felt like I had flu (without the fever) for a day and a half. Kinda technical but an interesting read:

http://www.prohealth.com/library/showarticle.cfm?id=7938&t=CFIDS_FM

I'm being treated for Lyme and there a effects from the treatment, but all I can do right now is a 10 min daily walk on flat ground.

This is something I wrote up on the Fibro forum. There's so much in common - Lyme, CFS, Fibro.

"Oh wow Guess .... if it might by Lyme or Fibro, you are in the Land of Uncertainty. I'll let the fibro people talk about what I think is a process of elimination for the fibro diagnosis. But diagnosis of Lyme could take a while and has its own problems. Many people with Lyme never test positive on a blood test. It is primarily a clinical diagnosis. The lab tests are just additional information. Has your Dr. seen tick borne diseases before? It sounds like he has since he is considering Lyme. There are also coinfections that many people get along with Lyme.

We are used to tests where it's like .... it came back blue so it's 99% likely I have it. Lyme testing is not like that. And there is controversy over what it takes for a Lyme diagnosis if something shows up on the tests. Rather than overinformation you all at once, let me post this link:

http://igenex.com/Website/

A lot of information from a leading lab for Lyme testing. If it is Lyme - there is a bacteria involved and you'll want to get it treated to keep it from getting worse. And there is hope that we'll improve some with treatment. And if you even think you might have Lyme, please consider having testing done at IgeneX

Probably it's best to start adjusting your thinking from days to months. The lab work from Igenex takes a while to get the antibdody response and takes like 4 weeks. I understand about the life not working well. As you get into this, please post if you have questions about Lyme and we can try to help. It's overwhelming. There is also a really good Lyme forum too that you might check out.

And please be careful with the driving. At least for the time being I've given it up completely. Please ask for help from your Dr. or a therapist if you need it. Anxiety and depression are common visitors to people with Lyme or fibro."

Just my opinion, but with a history of tick bites and the CFS/ Fibro symptoms you show, I feel you should consult a Dr. who has seen tick borne diseases before. I suggest not letting a well meaning Family Practice person tell you, "Can't be" or "we don't have Lyme here" or "we'll do a lab test to rule it out."

I'm not presenting the link above as "proof" of what's happening with your exercise intolerance. It's just a possible explanation and the only thing I've ever found that attempts to explain it. If you've had Lyme for a while, you may have a coinfection from the tick bite. With a weakened immune system you could also have an opportunistic infection such as CPn.

It's hard to say when i got Lyme, but the only tick bites I'm aware of were in TX in mid 1970's. The fatigue, fog and exercise intolerance really became a problem 3 yrs ago. I was diagnosed in Dec.

Hope some of this helps. The exersice intolerance seems so mysterious.



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Rich,
I finally read that article. It is fascinating. I guess I didn't understand exercise intolerance is a big issue for CFS/FM. I am just now delving into it because I was hit very hard the last couple of weeks. I tend to think I'm fine when the symptoms go away, and then am wiped out when they return. This time, my exercise was like a poison to my body, making my symptoms worse than ever.

My husband insists that I need more protein and so I am trying protein shakes before and after workouts. I am new to this forum and for the most part have taken my illness too lightly. I probably need to have some testing done. I am assuming, however, that testing is inconclusive in the case of CFS. Is that correct?

Thanks again,
Tracy

Hope the information helped 

CFS is an "eliminate everything else and CFS is what you're left with" thing, I think.  But with a history of tick bite - Lyme is definitely one of the things that needs to be evaluated.  My ARNP is great to work with.  When we carried things as far as we could, I aked her about seeing a CFS/ Fibro Dr. and she gave me a referral.

The Fatigue/Fibro Dr did all kinds of testing to look at hormone balances and stuff and also a screening test for Lyme.  It turned up a Lyme marker.  Follow up testing at Igenex was CDC positive for Lyme.  I don't have any of the other tick coinfections (thankfully) but do have an opportunistic CPn chronic infection.

I used to ski, jog, hike etc.  But after the exercise intolerance started, a short jog left me feeling like I had flu.  So now my overall energy level controls everything in life - have to live with a very restircted energy budget.  I hope the protein drinks help, but ...

I hope you can get connected with a Dr who has experience with Fatigue/ Fibro/ Lyme.  This is frustrating and I know you'd like to return to your active lifestyle.

ARNP = Nurse Practitioner      first line family practice person.

From reading I've done, the typical person with Lyme sees 5 medical people before a diagnosis.  In all fairness, first line practitioners are used to responding and treating the more common, specific things.  The problem with Lyme, CFS and Fibro is that they are non-specific.  It's hard to isolate the cause or causes of "I don't fell well".  A lot of times the first line people get frustrated, run out of ideas, and chalk it up to depression.  Often Lyme patients are referred psychiatrists. 

I think it would be worthwhile to find a Dr. who works extensively with CFS and Fibro patients.  Ask your family practice person for a referral, ask around at work, do an internet search for Fatigue and Fibro support groups in your area.  In the Lyme field, the Drs are know as LLMD - Lyme Literate MDs.  You can also ask on these boards - giving your area of the country or city.  Dr's names aren't posted on the boards but people can pm you.

I think it's well worth your time to contact a Dr who has seen a lot of cases of CFS, Fibro, or Lyme.  They know what to look for. 

For the IgeneX test, there is a kit you can get from them.  It's basically two tubes for blood samples with foam packing.  The samples are shipped by FedEx and do not need to be refrigerated.  However, they are supposed to get to the lab (Palo Alto) withing two days - so no sitting around over a weekend.  IgeneX recommends having the blood drawn on Mon, Tues or Wed for that reason.  I go to a CFS/ Fibro Dr - it's no coincidence that she keeps kits in her office.  In the course of doing CFS/ Fibro work, she has seen about 20 cases of Lyme I think.

The problem with these conditions is that they affect multiple body systems and therefore can present a whole variety of symptoms.  Lyme is called the "great imitator" cause it can look like CFS, Fibro, ALS, MS, Lupus, visual problems - all sorts of things.  That's why so many symptoms are listed.  The bacteria are spirochetes and could basically show up anywhere in the body.  Thankfully most of us don't have all the symptoms.

My Lyme syptoms are similar to yours.  Exercise intolerance, fatigue, brain fog.  I don't have the muscle and joint pain (thankfully) but I do have memory and concentration problems, anxiety and depression.  I think these are not uncommon.

I can relate to your situation.  I hope you can link up with the right medical person.  This will probably take some patience and persistence on your part.  Hang in there, Tracy.

Hi Tracy, as Rich has said so well, you do need a Dr who will listen to your symptoms & knows about CFS, Fibro & Lyme.  I have found Dr's who who just want to hand you a pill & get you out of the room because they haven't a clue.  When you make an appointment don't feel shy about asking if this Doctor has patients with these illnesses & is proactive in getting them the help they need.  A diagnosis can take awhile but it will come eventually.  Of course you will feel like a human pin cushion but that's the road we have to take.  LOL  I was dx'd with Fibro in 2004 after years of symptoms.  Then in 2008 I also was dx'd with CFS.  Looking back, it is the CFS symptoms I remember having for years.  When I got the dx for Fibro I was told that fatigue was one of the symptoms, so I didn't question it, but after reading posts on forums & Fibro sites I realized my fatigue was more, especially since I also feel flulike with it, swollen glands, sore throat & more.  I was able to go to my Doctor & tell her I thought there was something else wrong.  So she sent me to a Rhuemy who dx'd me again with Fibro but also with CFS.  Now, I feel there is something else going on.  I have a few symptoms that don't fit with either of these dx's.  So, once again I will go on the search.  It's like the layers of an onion, peal away the Fibro, then the CFS & see what is left.

I wanted to let you know your symptoms could be one, two or more illnesses.  I was told by a researcher in Auto Immune Diseases that even though CFS & Fibro are not AI diseases they are in the same catagory.  As a researcher, he has found neither one of them ever stands alone.  I have Fibro & CFS, my daughter has Fibro & 4 Auto Immune diseases.  Don't be afraid but be pro-active in finding out what you have.  Lyme Disease, I am finding, is so close in symptoms to what I have.  So, you need a good Dr, just because someone has been to school & graduated & was given the right to treat patients, this doesn't make them good.  Check around. 

Yes, I found I am clumsier then normal & have to take things slower.  As soon as I start rushing I drop & bang things around.  It drives me crazy sometimes.  I just have to slow down, I tell myself.  Maybe some day I'll listen.  I hope you find your answers.  Hugs, Denise

Tracy, I have to be very careful when exercising. I never know what or when it will send me into a flare. Sometimes it is the Fibro that flares, other times it's the CFS. Also, weather changes, barometer changes, cloudy, sunny, hot, cold, all can cause a flare. So, it may not be the exercise but what is it doing outside? Are you getting too hot? Etc. As time goes on you will begin to put 2 & 2 together. I have found that I usually figure it out on a subconscious level first, I will find that I don't want to do something & then will force myself & off I go into a flare. Such fun illnesses. LOL I am happy you have had a good day, they are like "gems" & how I do love them. Hugs, Denise