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Chronic Fatigue Syndrome
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Posted 1/14/2010 5:08 AM (GMT -8)
I  am in a real bad place over here. not sure what's going on. wonder if any of this sounds familiar to any of you . I normally post on the Fibro board and Chronic pain. I am sure there is more going on. but have not been able to figure out what yet.

 

symptoms.

 

fatigue... activity seems to really do me in and have to lay down. some times takes days to recover. from like the grocery store. . or when we go over to help my parents . I don't do much but what I do get done I suffer for later.

 

I do have Fibro... but they have not ruled out so many things yet.

 

I will break out in a sweat. dripping from my forehead and back of neck.. kind of like a hot flash but not.. at the same time my arms will be cold to the touch and I guess outer limbs will be cold and this causes my muscles to hurt.. I will feel clammy and cold. sweaty. also makes me feel extremely ill. sick to tummy . nausea , short of breath , weakness

 

lately loss of apatite weight loss.. but I cut back on the Lyrica and are no longer starving. thought this might be why losing weight . but loss of apatite. ? not sure..

 

of course at the same time I have my reg Fibro symptoms.

neck pain , disc disease. bulging disc.. this causes migraines. .. shoulder blades constant burning . and pain.. lots of grinding when I do my stretches...

arm pain. muscles. ligaments.. deep muscles pain. and skin hurts to touch. feel bruised always feel cold.

leg pain muscle pain . ligaments I think too. constant hurt. ach.

feet. I do have arthritis in my feet. x ray.. bottom of heal feels bruised like I jumped from the roof and landed on my feet. ( I did this as a child. )

problems walking . short of breath , fatigue, always feel like I have not slept. I use a c-pac . sever sleep apnea .

Fog. cant find the right words. saying something other than what I was thinking. short term memory long term. trouble talking .

hip pain. shoulder pain... where I lay on my body to sleep will feel bruised all day .

my hands hurt bad too. was told arthritis but no x ray to prove it.. knuckles turn white then later red... right hand is worse. cant write some days. can not open jars. ect.

and the list goes on and on.

I have been telling my family doc something else is going on besides Fibro .. but we have not figured it out yet.

 

does any of this sound familiar to any of you ?? I need help.

thinking of filing short term disability at work. and then long term . and ssd.

 

sorry if this is all mixed up . cant keep it straight today. trying though.. thinking maybe ME

 

 forgot some things...
sore throat , ear ach... gland under my arm hurts

Posted 1/14/2010 5:58 AM (GMT -8)
sounds like Lyme and coinfections to me. the coinfections sound like bartonella and Babesia. I am not a doctor, but have a lot of expereience with lyme and coinfections. have you ever been tested for lyme? testing is unreliable, so even if you tested negative you could still have it. I have fibro and cfs from my lyme disease, so it is possible to have all 3.
Lyme would explain- pains, sore throat, fog, fatigue, loss of appetite
bartonella would explain th epain in your feet, sore throats and swollen painful glands
BAbesia would explain the shortness of breath

So my suggestion is to see if your primary would test you using a lab called Igenex for all 3 things. If not you need to find a Lyme specialist to see if you have these things. post in Lyme forum and they will direct you to a place to get info on a doctor.

there is much controversey regarding Lyme so it will not be cut and dry.

you may be wondering what the treatment is for these things?

High doses of doxycycline 300-600mg a day is a typical choice until you are symptom free for 2 months

a bartonella med would be something called rifampin

and finally for the babesia a med called mepron. the thing to remember about babesia is it is a blood parasite simillar to malaria. abx dont work on it.

so thats my 2 cents worth. remember I am not a doctor just a patient!

good luck
Posted 1/14/2010 7:07 AM (GMT -8)
Hi Merrygirl,

Thanks so much for responding.. I go see my family doc tomorrow.. and will ask about these test.. I did have my Rhume test me for Lyme.. but to be honest she had no idea what test to Run.. and from what i understand , you really need to know the correct test.. the ones she ran showed nothing. Negitve. .but as you said .. that does not mean I dont have it..

my family Doc.. now has a " Endocrinologist in there office . i was thinking about seeing if he knows anything about all this. and if he is any good. might be a good starting place

thanks again.. I'll post later .

take care .
Posted 1/14/2010 8:17 AM (GMT -8)
you want to ask for IgM and IgG western blot tests. write it down and bring it with you.

DO you have exposure to ticks? have you ever had a tick on you?

if you have exposure and/or a history of a bite and a lot of symptoms, a lyme specialist may treat you based on the clinical picture vs. a test result, so dont be discouraged.


best of luck,
melissa
Posted 1/15/2010 2:11 PM (GMT -8)
I agree with merrygirl, it sounds like Lyme! I am early in my dx of Lyme, no treatment yet, we are waiting until the co-infection tests etc come back. Just going on the symptoms though, I would not give up on Lyme until you rule it out for absolute sure!
Good Luck!
Posted 1/17/2010 1:15 PM (GMT -8)
Thanks for chatting with me...
I did see my family doc Friday . I asked about the Doc. in there office. " Endocrinologist " if he is any good and knows anything about CFS. and co-infection , Lyme. etc.. you should have seen the look he gave me LOL.. I just love my family doc.. so anyway this other Doc the Endocrinologist is not worth seeing .
he is running some more Blood work as soon as I go in to the lab. that is. he concerned that I may be developing a under active thyroid .. asked him to Dig deeper for me. and talked to him about a lot of this . He gave me copy's of my last blood work so I could go over what he is testing for . and then said we may end up having me see a " Infectious Disease " Doc.. ? he is testing me for Lupus again. and I do believe RA. and he said hold tight about the fatigue for a minute ... he shows concern . and always can tell if I am bad off. . Lord he should, I have known him for 7 yrs now. and there have been times I have been in his office 3 times in one week last time I went on short term Disability . that's when I got the Dx of Fibro . ... and then was told by my Rheumatologist that CFS and Fibro go hand in hand ..but she knows nothing about CFS to help me. so a waist of my time over there.

What kind Of Doctor do you guys see ? ..

I also called a SSD lawyer to try and get a plan if I can not handle working any more , they said SSD will want me to have seen a PM Doc. . Shrink. ( sorry spelling the correct word today wont come ) and of course a specialist Doc. ,.,... I will have to find a new one as my Rheumatologist .. sorry they really don't do anything for me. so I have not seen then in about 7 months. . wow..
but I am checking into this as I need a plan ahead of time.
this is all so over whelming at times..

oh do any of you know the real name of the new test for CFS. the XMRV .. the lad could not find it in there data base by this. my Doctor asked me to get back on line and find the whole name for him.. I got his interest up on this new info
Posted 1/18/2010 10:31 AM (GMT -8)
not surprised you had trouble asking for lyme testing. sorry about that. The infectious disease doctor would likely know more, but you may get the same look! I see a Lyme specialist. If you need help finding one email me at mkerinsicutech at yahoo dot com.

For more info on XMRV go to vipdx.com

I am currently in line to get a test kit.


I still think its worth looking into Lyme
Posted 1/12/2011 9:54 PM (GMT -8)
i dont know if you have already done this since this was posted a while ago, but you should get the treatment for lyme disease even if the tests show up negative if your symptoms persist. I had many of the symptoms you had/have and I talked to a lyme disease specialist and was told that I had a classic case, and he told me some of the tests that I should do to know for sure. He also told me that the tests come up with many false negatives and that it's quite rare to actually test positive for lyme even with a patient with lyme.I am currently taking 200-300 mg/day of doxycycline and I have been feeling much better than I have for a long time. If your doctor won't give it to you, which he really should just in case, you should make up something wrong with you that doxycycline would cure, and make sure it's something that takes a fairly long period of time to cure as lyme can take about a month to two months before you even notice a difference. Also be sure that you don't get any adverse reactions to it, if you do, research some of the other antibiotics you can use to successfully rid yourself of lyme. I hope this helped or even more so I hope you are already on the path to good health again.
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