Achey Chest Wall, Fatigue, Etc

[MomtoGiuliana]

Hi Everyone

Just posting this in case anyone else experiences this or has any thoughts. I have never gotten another diagnosis besides POTS (and Hashimoto's), but I get these symptoms, erratically, that dont seem to be POTS. This cluster of symptoms started in 1992--severe then, and then over time a trend of less severe. The symptoms typically last a week or so, and then go away. Sometimes for weeks, sometimes months, sometimes years. For about 5 years (pregnancy and long time after) I didn't get this at all. Now I am experiencing a resurgence. Back in the 90s I had a few tests, all negative, drs said I had some sort of virus probably and it would probably all go away. It started in Africa, so I even had tests for typical infectious diseases I might have been exposed to, along with looking for markers of autoimmune problems.

Symptoms typically start with tingling/pins and needles feeling all over, slight temperature, muscle aches, then more aches, fatigue, head ache, nausea. The symptoms all get worse after I eat. I don't remember this so much from the past, but my entire chest wall feels stiff and hurts (yesterday and today). I feel extremely fatigued.

I realize this sounds somewhat similar to POTS, but this is a now familiar cluster of symptoms that seem a little different from what I normally experience with POTS.

I really don't want to do internet research...and freak myself out. A physician response is pretty predictable, since nothing came up before, but maybe I should see a dr...I am so disabled by the fatigue I am taking off work today.

[janiedelite]

I agree that the slight fever doesn't sound like POTS either. The symptoms you described sound exactly how I felt when I had mono 3 and 1/2 years ago (which they say was the virus that triggered my POTS). Have you been tested for Epstein Barr? I know you don't want more tests and I can understand that . When I asked my PCP to test me for this last visit she said it wouldn't make any difference if I was positive because all they do is treat the symptoms, which is what we're currently doing with my POTS anyway. I didn't completely agree because there are some treatments that are being successfully used for chronic EBV infections. Anyway, I digress!

[MomtoGiuliana]

Thanks thankful...I was probably tested for mono at the time. Since it comes and goes so much it seems more like an auto immune response/flare up than an infection? Also, usually I am not bedridden by it, it slows me down and is just an annoyance and worry, mainly.

My pcp ordered standard blood work a few weeks ago that I had finally yesterday. Today they called me to tell me all is good except I have "significant anemia". My periods have been heavy again so this was not a surprise. They say I need to step up my iron intake. And this probably explains at least some of my fatigue over the past few days since I just had my period.

Anyway, I guess I will see how I feel by end of the week.

[iheartcats]

I get muscle aches, fatigue, and chest wall pain. I was thinking the other day how my chest wall pain would probably freak out a normal person, but I just go along and assume it's somehow tied to POTS.

I have had positive ANA tests (have you ever had one?). I was sent to a Rheumotologist with a suspicion of Lupus...but then my tests came back negative again. It's back and forth with the tests and rather annoying. Do you ever get Livedoid Vasculitis (http://www.mayoclinic.com/health/livedo-reticularis/AN01622). Someone on the board finally told me what it was. I've had it a long time on and off (arms/legs) and no clue it had a name. Could be another Autoimmune issue, could be nothing.

But my PCP is sending me to a Rheumotologist to discuss it as it's not his expertise. That's in a couple weeks so I'll post if i learn anything about it that could be helpful for someone.

I hate the fatigue. I don't eat red meat or pork and barely any chicken so my anemia gets low and makes the fatigue worse!

Are you tachy at all? Anemia makes mine worse, but I'm on a BB now to help.

My former Cardio wants me to get a Lyme Test (just in case) so I have to go in and talk to my PCP about that (who can call the Cardio if he disagrees so hopefully I can get it). I think it's just a blood test. But...then what do you do - you said you've been tested for viruses but I think there could be Viral issues (even older RNA retroviruses from what I've read recently) that could bother us. Does the body eventually fight these off? I hope so. But that doesn't help us now.

I feel for you because I know where you are coming from - and I have to get back to work and it's not easy with the good weeks and the bad weeks.

[MomtoGiuliana]

I've had a couple ANA tests, at least, over the years, and all were negative. I've never had Livedoid vasculitis. I have wondered if I should see a rheumotologist though. I had one dr who thought I might have lupus...but the ANA test was neg so he dropped that theory.

I am tachy and yes anemia makes it worse. Any exertion and my hr goes high. I am also a vegetarian, but from what I understand, the body doesn't absorb iron better from meat than from high iron vegs, like beans, broccoli, etc. In other words, being a vegetarian doesn't put you at risk for anemia if you eat a balanced diet. My periods have been heavy recently and I need to take my iron supplement regularly, which I had not been.

I live in a high Lyme disease incident area and have quite a few friends who have had it. But they mostly had the standard symptoms--high fever, rash. In a couple cases, they only had 2nd stage symptoms--eg Bell's palsy. I have been tested for Lyme in all the different ways, and never positive. None of my local friends who have been diagnosed and treated for Lyme have had symptoms like mine (other than fatigue).

Wouldn't it be nice to have answers! No it is not easy to maintain a normal work schedule and not be normal! I feel for you too!

[jump]

Hm this is interesting to me. I get chest-wall pain that comes and goes (usually for a few days or a week at a time), accompanied by low fever and fatigue. It bothered me so much last winter that I went and got a battery of lung tests, all of which were normal. In my case, this chest-wall pain did not start with the onset of my other POTS symptoms, but rather started several years later, after I had had a nasty chest cold that I left untreated (bad insurance at the time). The chest pain started with the illness, and has come and gone in varying degrees of severity since then. On really bad days, I can only take shallow breaths because of the pain, and I can't really do anything. I've tried anti-inflammatories and they don't really seem to do anything.

My doctors had all just been telling me this was POTS, but when I went to see an EP (who is the only doc I've ever seen who seemed to know what he was talking about), he said he felt fairly certain that the chest-wall pain was NOT POTS. Maybe related somehow (the way my various autoimmune problems might be related), but not caused by it. He also thought the degree of fatigue I was describing was not related to POTS. I haven't pursued anything further with this, because I've already seen a lung specialist and lots of cardiologists, and I don't know who else I would see about this pain.

If you ever figure anything out, please do post it here!

[iheartcats]

I've had a couple ANA tests, at least, over the years, and all were negative. I've never had Livedoid vasculitis. I have wondered if I should see a rheumotologist though. I had one dr who thought I might have lupus...but the ANA test was neg so he dropped that theory.

I am tachy and yes anemia makes it worse. Any exertion and my hr goes high. I am also a vegetarian, but from what I understand, the body doesn't absorb iron better from meat than from high iron vegs, like beans, broccoli, etc. In other words, being a vegetarian doesn't put you at risk for anemia if you eat a balanced diet. My periods have been heavy recently and I need to take my iron supplement regularly, which I had not been.

I live in a high Lyme disease incident area and have quite a few friends who have had it. But they mostly had the standard symptoms--high fever, rash. In a couple cases, they only had 2nd stage symptoms--eg Bell's palsy. I have been tested for Lyme in all the different ways, and never positive. None of my local friends who have been diagnosed and treated for Lyme have had symptoms like mine (other than fatigue).

Wouldn't it be nice to have answers! No it is not easy to maintain a normal work schedule and not be normal! I feel for you too!

I have a feeling my Lyme test will be normal too! My first 24 years of life were a high Lyme area...the next few were a more moderate area...but I've read about dormant Lyme disease...doesn't show on tests and hides. So I wonder, what ELSE could do this and make us worse?

I try to eat beans and broccoli and try to remember my vitamin with Iron. I'm always on the very low/borderline of anemia but I have been for my entire life. I wish there was an easy way to test CBC at home.

I'll let you know what the Rheumy says (about positive versus negative ANA). Maybe ANA is only positive during flares? My former Rheumy I saw once said some people have Lupus but it doesn't really ever manifest. Watch for the symptoms, but hope it stays dormant.

Comforting!

[MomtoGiuliana]

Hmm, we may have something different b/c anti-inflammatories help my discomfort and also mine comes along with this odd cluster of tingling, general malaise, muscle pains, head and neck ache, low fever. Again, started in Africa--where there is no Lyme disease as far as I am aware. But loads of other stuff of course.

Being only able to take shallow breaths is rather disturbing. My chest pain (and it is stiffness too) is mild. In my case, it's really more of an annoyance, and vaguely disturbing to not know what it is.