Hello,

I have been trying to come to a conclusion of pains/illnesses that I have been suffering since late September 2004. It started with uncomfortable mild chest pain that sent me to the ER (to be on the safe side). I wasn't too concerned about my heart as I'm a 29 year old male, 6'1", about 200 lbs. who generally eats healty and tries to stay fairly fit, even though I have a desk job. Convincing tests showed that my heart is healthy. Comforting to know, but why the pain? The chest pain (more on the left side of my rib cage) comes and goes, and I also experience pain in my back (moves around from episode to episode). All the pain feels muscular to me. To keep this reasonable, let me list all the symptoms I have been experiencing the last several months:

- Chest/Flank/Back pain (feeling muscular in nature)
- Light headedness (~ 3-4 times per week)
- Occasional headaches
- Ringing ears (constant with varying degrees of intensity)
- ENT says this is probably due to nasal polyps (light headedness too)
- Occasional Flu-like feelings (shivers, fever-like feeling (no temp), achy)
- Occasional Nausea
- Sickness 3-24 hours after exercise (quite repeatable)
- Occasional Fatigue

I've done a good amount of reading on CFS/Fibro and realize that I am in favorable shape compared to many folks suffering from these syndromes, but my quality of life has definately declined and it's been/is scary. I am able to go to work every day and get through it, but more often than not, I'm spent by the time I get home.

The scariest and most repeatable symptom is getting sick after exercise. A 10 minute steady jog on the treadmill after work can lay me out for a couple of days. Therefore, I don't try that very often anymore. Only every so often on weekends and knowing my wife will be around. I feel fine during the exercise, but anywhere from 3-4 hours after I start feeling sick (flu-like) and get muscle pain (usually in the back) that get bad enough to make me nauseous.

As most folk on this board can relate, I've contributed generously to the doctors "Porcshe" fund with unsatisfactory return. During my last visit my GP stated that I just need to move on (it's all in my head). I have had quite a list of testing including heart catederization (rule out heart disease):

- Almost every blood test imagineable (yes, including Lymes)
- 5HIAA Urine Test (for overactive adrenal gland testing)
- Hypoglycemia Test
- Chest X-Rays
- Stress Echo
- Heart Cathederization
- CT Scans of Chest and Abdomin
- HIDA Scan (Gall Bladder)

All tests returned favorable and the doctor has pretty much given up. I have an HMO, so it's definately not top-notch health care. I plan on getting better insurance next enrollment period at work, but that won't be untill Jan 2006. The doc wants me to keep exercising at small intervals and follow up with him next month. He has never mentioned CFS or Fibro as a possibility. Do you think I could be a likely candidate? I should mention that I have not experienced sore throat or swollen glands.

I did go see a fairly reputable ENT about my ringing ears/light headedness and he says I have nasal polyps that restrict my airways. He gave me some Flonase, but it's doing nothing. I may have to get them removed if the Flonase doesn't help. I've only had one day that I would consider a serious dizzy spell.

I have good days and bad days, but haven't felt 100% for many months.

Please share your opinions. Sorry for the extensive post! Thank you for your time, support and advice!

FlyinJ

Hello,

I have been trying to come to a conclusion of pains/illnesses that I have been suffering since late September 2004. It started with uncomfortable mild chest pain that sent me to the ER (to be on the safe side). I wasn't too concerned about my heart as I'm a 29 year old male, 6'1", about 200 lbs. who generally eats healty and tries to stay fairly fit, even though I have a desk job. Convincing tests showed that my heart is healthy. Comforting to know, but why the pain? The chest pain (more on the left side of my rib cage) comes and goes, and I also experience pain in my back (moves around from episode to episode). All the pain feels muscular to me. To keep this reasonable, let me list all the symptoms I have been experiencing the last several months:

- Chest/Flank/Back pain (feeling muscular in nature)
- Light headedness (~ 3-4 times per week)
- Occasional headaches
- Ringing ears (constant with varying degrees of intensity)
- ENT says this is probably due to nasal polyps (light headedness too)
- Occasional Flu-like feelings (shivers, fever-like feeling (no temp), achy)
- Occasional Nausea
- Sickness 3-24 hours after exercise (quite repeatable)
- Occasional Fatigue

I've done a good amount of reading on CFS/Fibro and realize that I am in favorable shape compared to many folks suffering from these syndromes, but my quality of life has definately declined and it's been/is scary. I am able to go to work every day and get through it, but more often than not, I'm spent by the time I get home.

The scariest and most repeatable symptom is getting sick after exercise. A 10 minute steady jog on the treadmill after work can lay me out for a couple of days. Therefore, I don't try that very often anymore. Only every so often on weekends and knowing my wife will be around. I feel fine during the exercise, but anywhere from 3-4 hours after I start feeling sick (flu-like) and get muscle pain (usually in the back) that get bad enough to make me nauseous.

As most folk on this board can relate, I've contributed generously to the doctors "Porcshe" fund with unsatisfactory return. During my last visit my GP stated that I just need to move on (it's all in my head). I have had quite a list of testing including heart catederization (rule out heart disease):

- Almost every blood test imagineable (yes, including Lymes)
- 5HIAA Urine Test (for overactive adrenal gland testing)
- Hypoglycemia Test
- Chest X-Rays
- Stress Echo
- Heart Cathederization
- CT Scans of Chest and Abdomin
- HIDA Scan (Gall Bladder)

All tests returned favorable and the doctor has pretty much given up. I have an HMO, so it's definately not top-notch health care. I plan on getting better insurance next enrollment period at work, but that won't be untill Jan 2006. The doc wants me to keep exercising at small intervals and follow up with him next month. He has never mentioned CFS or Fibro as a possibility. Do you think I could be a likely candidate? I should mention that I have not experienced sore throat or swollen glands.

I did go see a fairly reputable ENT about my ringing ears/light headedness and he says I have nasal polyps that restrict my airways. He gave me some Flonase, but it's doing nothing. I may have to get them removed if the Flonase doesn't help. I've only had one day that I would consider a serious dizzy spell.

I have good days and bad days, but haven't felt 100% for many months.

Please share your opinions. Sorry for the extensive post! Thank you for your time, support and advice!

FlyinJ


Flyin,

A classic symptom of CFIDS is that 6 to 9 month period at the onset of the illness where the symptoms of fatigue, fluey feeling etc., never abate. Did you have this? Visit the CFIDS foundation home page, but I'm pretty certain this has to have occured in order to receive the diagnosis. This is pretty easy to identify because you wake up one day extremely ill, don't know why, and this doesn't change for months on end. I remember I got my will in order when I was going through that 12 years ago. That's how sick I felt. But of course the unknowingness of what one has makes it even worse.

This said, I'm sure there are exceptions to everything and the rest of your symptoms do fit the profile, including the chest pain mimicking heart problems.
If you haven't already, I would do even more research and visit other forums. Through this process, you will eventually know what you have regardless what the doctors tell you. Most doctors haven't a clue when it comes to this illness.

All the best!

Peregrine - Thank you for your reply!

No, I do not have a constant illness feeling. I have good days and bad days (and some in between). At times I will have a full week of feeling almost 100% normal. Back in the November timeframe, like you, I prepared for the worst..making sure I had beneficiary forms correct..Taking out additional life insurance through work..basically making sure I would leave my wife in a pretty comfortable financial position in case I was facing something fatal.

As I said in my previous post, the sickness after exercising it the one symptom that really lays me out and scares me. From the searching that I've done, this does not seem like a common symptom to link to anothe type of illness.

Yes, I've visited some of the CFIDS web sites and from what I've gathered, I don't quite have enough of the symptoms that a doctor needs to make a CFIDS diagnosis. I will check out the site you suggested. With my previous post, I was fishing to see if CFIDS comes on gradually, or it hits a person full blown one day and doesn't let up. It sounds like in your case, it hit you and didn't let up for a long time (if at all?).

From what I've read, it sounds like a very challeging situation to cope with on so many levels. I find it discouraging that with all the technology we have to our advantage today, and the fact that this has been around for at least 20 years, the medical community knows very little about CFIDS/Fibro (how it's caused/treatments). I guess that's not where the dollars go for research.

If not CFIDS, whatever is happening to me has got me scared and is changing the course of my life to a degree, nonetheless. I'm going to see what happens with the ENT and the ring ears/nasal polyps, and I will then probably change my PCP. I don't agree with the "you need to just live with the pain/it's all in your head" diagnosis from my current doc, so I feel it time to run from him. It's a shame, because in the beginning of this, he was pretty supportive and motivated to get this figured out. I guess they give this diagnosis when they run out of ideas?


Once again, thank you for your time and reply.

Wishing you the best!

FlyinJ

Hi,
First of all, read my post on ' Chronic Epstein Barr Virus ', and see what you think about it, not insinuating that you have it, however there may be something in there that would be helpful for you. I do hope so.

I do agree with you about these Doctors acting as though our aches and pains are in our heads........., my Srink says ' NOT ', they are in my body.lol.

I strongly suggest that you find a ' Doctor of Infectious Diseases ', as they do deal with CFS.
Sounds like me, you have a lot of different problems going on.

Say, did you mention Fibro, as in ' Fibromyalgia ' ? If so, let me know.

I hope I have said something to help.

Gee Gee

Peregrine - Thank you for your reply!

No, I do not have a constant illness feeling. I have good days and bad days (and some in between).

This is typical - periods of relapse and remission after the original
onset

As I said in my previous post, the sickness after exercising it the one symptom that really lays me out and scares me. From the searching that I've done, this does not seem like a common symptom to link to anothe type of illness.

You're right. This is a common symptom of CFIDS

Yes, I've visited some of the CFIDS web sites and from what I've gathered, I don't quite have enough of the symptoms that a doctor needs to make a CFIDS diagnosis. I will check out the site you suggested. With my previous post, I was fishing to see if CFIDS comes on gradually, or it hits a person full blown one day and doesn't let up. It sounds like in your case, it hit you and didn't let up for a long time (if at all?).

Unless you find a doc savy about CFIDS (they do exist) you will have to determine for yourself if you have it. I think there are always atypical symptoms with any illness and you may fall in that category.

From what I've read, it sounds like a very challeging situation to cope with on so many levels. I find it discouraging that with all the technology we have to our advantage today, and the fact that this has been around for at least 20 years, the medical community knows very little about CFIDS/Fibro (how it's caused/treatments). I guess that's not where the dollars go for research.

Because people don't die from CFIDS (They just feel like they are dying!), money is not forthcoming for research

If not CFIDS, whatever is happening to me has got me scared and is changing the course of my life to a degree, nonetheless. I'm going to see what happens with the ENT and the ring ears/nasal polyps, and I will then probably change my PCP. I don't agree with the "you need to just live with the pain/it's all in your head" diagnosis from my current doc, so I feel it time to run from him. It's a shame, because in the beginning of this, he was pretty supportive and motivated to get this figured out. I guess they give this diagnosis when they run out of ideas?

CFIDS affects every organ system, which means you would be running from specialist to specialist for answers. I certainly did in the beginning years and it all proved fruitless because nothing definitive ever showed up. Eventually, I learned what kind of things cause the virus to flare up in my system and tried to be mindful to not set the stage for it to appear. I also have found that the best people to treat those symptoms to be in the alternative field - kineseologists, Chinese medicine, etc. But I think one day the medical establishment will wake up and realize that CFIDS is much more insidious than they thought (apparently some now think MS, AIDS and CFIDS are related through a similar Herpes virus). CFIDS alters one's life and necessitates major life changes. This, I think, is one of the most difficult aspects of the illness. I use to be an athlete. Now, I'm lucky if I can make it to the gym twice a month. This, and the fact that CFIDS is still often unrecognized as a major illness, so not really taken seriously, only further contributes to stress, and stress exacerbates the illness.........and on it goes

I have been going thru the same thing for 2 years now, except I never feel good. It was suspected to be CFS, now they are thinking MS. Keep after the doc, an MRI of the brain might be a way to know for sure.

Thank you all for the replies and advice!

As far as adrenal problems, I did take the 5HIAA test that my doctor ordered when he suspected I could have overactive adrenal problem. It came back in range. After researching Addisons a bit, I don't feel that is what I am experiencing.

The tryroid testing is a good call. I seem to remember at least one test that the doc ordered, but I don't think he tested extensively. I have an and with thyroid problems on my mothers side. I sent my doctor a message today to see if he did that testing.

I spent some time on the National CFIDS Foundation web site this afternoon and found that out of the 8 defining symptoms, I only have 3 of 4, only 1 being consistant:

substantial impairment in short-term memory or concentration,
sore throat,
tender lymph nodes,
-> muscle pain, (day(s) after exercise)
multi-joint pain without swelling or redness,
-> headaches of a new type, pattern or severity, (~once per week)
unrefreshing sleep, and
-> post-exertional malaise lasting more than 24 hours (repeatable/frequent)


Unless CFIDS takes months to become full-blown, I'm becoming more convinced that I probably don't have it...Especially after reading about what most people experience who are suffering. Since I haven't missed any work since mid-November it seems unlikely to me. However, I have been pretty good about staying within my boundries when it comes to exercise.

Does anyone know of other illnesses that could be linked to post-exertional malaise? I should probably check some of the other boards where this syptom is common.

One other thing that I have noticed recently is that I can't tolerate doing weekly errands well (grocery shopping, etc.). 20-60 minutes of shopping and I get light headed and get left flank/back pain and have to go home and rest. Yet I can work 9-10 hour days and feel pretty average all day most of the time????

One again, thank you for all your support and suggestions.

FlyinJ

FlyinJ, You mention the fact that you have sinus polyps and considering their surgical removal. Having had this procedure performed, I can at lease inform you that it's sufficiently benign to have done if for no other reason than that it can be ruled out as contributory to you complaints. (of course, it 'may' be contributory). Also, since you've had all these other tests, why not request an MRI of your spine, since your muscular pains may possibly emanate from some condition that can be picked up by this procedure. If you can rule out these 2 areas then it would seem you have a firmer basis for staying on the the CFS path.