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Old 02-16-2009, 12:38 PM   #1
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Arrow Hi - Does Anyone Here Have These Symptoms?

Hi. I am new here...

I've been diagnosed with CFS; I was diagnosed a while ago, and I've been sick for over a year now. I'll just give you some background - I am 26 - female - I was a grad student but I now can't do anything. I had CFS before when I was 17, and after a year I was OK - but it was totally different to what I have now in terms of symptoms, onset, etc. This was so much more severe that I was really reluctant to even think it could be CFS, too - the first time it was just muscle ache, pain after activity, swollen glands, headaches - I got it after getting Epstein Barr, and it was like it took 2 years to go away. But after that I was TOTALLY FINE for years. I did a degree, I studied, I walked A LOT (it was a hobby of mine to go for crazy long walks), and travelled a LOT!

FFWD to a year and a bit ago. I did a lot of work/study in a short period, I guess. I really pushed myself. Now, it came on gradually - headaches, sensitivity to sound and light. Over the course of a few weeks, things deteriorated. I could not sit up. I was too weak. Headaches were getting worse - intense pain. I started having a loud high pitched sound in my ears. (Tinnitus.) Sound sensitivity got intensely bad, as did light sensitivity. Even the sound of traffic outside would feel excruciating. Everything sounded louder than it was. I could not have conversations. I couldn't speak properly. Everything kept getting worse, and just when I thought it couldn't get any worse, something new started. And then the sensation in my spine started - a vibrating sensation. In the beginning it spread throughout my body. I was waking up in the middle of the night unable to breathe. Palpitations. Blurred vision. Cloudy vision. (Milky white). Shaking. I woke up seriously shaking - like - convulsing - several times. Even at rest, too, my body felt as though it was shaking when it wasn't. I had some tests. I went to a neurologist. He was not very helpful (file under: bad doctor experiences), and eventually I got a better doctor who actually believed me about a lot of my symptoms. My parents had to look after me, they had to feed me - I couldn't really eat, but my mum made me small mashed-up things, or porridge with honey. I lost 2 stone. I was in the darkness, in silence, for months. Any noise or light was agony. Gradually I became able to do things in small doses again - TV, computer, walking (not for long!), and so on. As I'm sure you all know, it goes in phases - and sometimes you just don't know why. It's not like I always "overdo" it (ooh, I went for a 20 minute walk!) before getting REALLY sick again. I could go on with my story forever, but I just wanted to give you some background! They did an MRI of my brain and they didn't find anything, so they sent me away and that was that - at my next consultation with Bad Doctor, he suggested that he was going to refer me to a psychiatrist. They have not been very good about giving me medication. In the beginning when I was REALLY just incredibly sick, they gave me diazepam to help me sleep at night (the shaking sensation and vibrating sensations in my spine keep me awake and it's much worse at night), but then they stopped giving me the diazepam. I live in the UK and they do not prescribe anything readily - other than anti-depressants. Have tried a number of these, just so that the doctors could see that I was listening to them. They made me worse. If anyone is interested, I'll give you that story, but the upshot is that I stopped taking them due to side-effects, and the fact that they didn't help, of course. Propranolol has helped me during the day. I just managed to get the doctor to prescribe me Zolpidem at night, but I don't know if I can get any more. This makes me not want to take it, because I don't know if I can get more. It is scary to be in the dark at night and all I can feel is like someone is electocuting my spine, or something - that's the kind of "emergency" time I keep the pills for. I am not drug-seeking! You know - doctors. If you tell them you can't sleep, no matter what the reason, their standard medical approach is "low dose anti-depressant" - I mean, I've tried that. It didn't work, and made me feel worse. My GP does believe me, and I do have a CFS doctor now, but they don't seem to want to give me much medication. My CFS doctor said he thought I should be admitted to hospital for three months. I declined; I am looked after where I am, and stick to the kind of regime that I would have in the hospital. This has been SO HARD for me as it is, and the one thing I take comfort from is my environment.

Anyway, this week I have been ill again. Getting very weak, stomach pain, chest pain, loud noise in my ears (that never went away), vibrating feeling starting at the base of my spine (this has also been pretty constant for over a year now - it moves and changes, but it's there most of the time, in the background), blurred vision, halos around lights, aversion to lights/sound... I am exhausted, and my muscles hurt, but that's pretty minor compared to my other symptoms, so I never list that first. I DID get an MRI of my spine and my nerves checked (all of this cost a lot of money), and they didn't find anything. So, anyway, I just wanted to know whether anyone else out there had this stuff. My doctor tells me that some people do have this stuff - he says not very often, but that it's definitely ME/CFS-related. I don't doubt that. I just feel very lonely, and it's quite difficult to keep positive. I have been keeping positive and just trying to keep going - focussing on the good parts of my day, and the ways in which I have improved, and setting myself little tasks and goals and projects like watching DVDs of TV shows! Can be quite tiring but I am getting through them. Sometimes I go out and it's quite hard (the world is a hazardous place - lights, sounds, etc!), but I manage it now occasionally. It's important psychologically.

Anyway, if anyone would like to talk, or message me, or reply to this, or if anyone has any questions and stuff, that would be nice. It's a bit of a difficult time for me at the moment because I am getting worse again, and I feel that not many people understand. I have a few friends left, but not many who "get" it. Luckily my parents have been supportive and have taken care of me through the times when I could not walk or move around the house, etc. I'd love to communicate with people who actually understand what we go through on a day-to-day basis. It's very difficult. Sorry for the long post, and thanks a lot for reading.
Take care.
Take care.

 
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Old 02-16-2009, 08:55 PM   #2
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Re: Hi - Does Anyone Here Have These Symptoms?

Im sorry youre going through this. All I can do is listen, I guess...and read..and hope that I too can feel better soon. The last two days I have been online a lot reading about CFS and ME. I think I might have it. I excluded it a long time ago because I dont have sore throat, and mine didnt start with a flu or sickness, although I did have mono in 2000, but recovered really quickly from it.
My story...a year ago, I had my seond baby. About six to eight weeks after, I started to get these foggy feelings...so much so that I went to the er where they told me anxiety. I have had a whole slew of symptoms over the past year and have not been diagnosed with anythign except for iron def which is now normal. Has brain scan, eeg, sleep study, etc. I am so tired I can barely take care of my two boys. My husband thinks Im being lazy and just dont want to work...it is terrible. Write back on here if you would like. Sorry I cant be of more help...

 
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Old 02-17-2009, 04:53 AM   #3
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Re: Hi - Does Anyone Here Have These Symptoms?

Hi! Sorry you've not been feeling well. Do you have muscle aches, and do you notice that you get exhausted after completing tasks - with a sort of delayed effect? That seems to be a characteristic feature - you can feel a bit better and then do something and feel fine, but the effects may kick in the next day and it will feel like you have the flu or something - muscles aching, etc.

It's good that you had the iron deficiency test. I had all of those and my levels were fine. The diagnosis of ME/CFS covers a range of different symptoms and syndromes. There is basically a lot that they don't know. In case you didn't know (sorry if you did, I guess I'm just posting this so other people might read it too), the basic medical approach to this is to get you to do the same amount every day. You build up activities VERY gradually, from something called your "baseline", which is the amount of activity you can undertake without being exhausted afterwards. "Activities" cover everything you might do - EVERYTHING. So, for me, I must measure out sitting up/computer use/TV watching/listening to music/bathing/getting dressed/brushing teeth/eating, etc - you classify ALL your activities into high/medium/low, and spread them throughout the day, around rest periods. You are supposed to take several rest periods in a day - where you lie down in a dark room, close your eyes and eliminate ALL external stimuli. This is what they term "neurological rest". You are resting your brain, as well as your body - it is very important not to be listening to music, or anything like that. Anyway, you can design your own program and slowly increase the amounts that you do. There will still be "peaks" and "troughs" - i.e. times where you feel better vs times you feel worse, but the aim of this approach is to eliminate the highs and lows and to give you a steady increase. I hope this helps. I am not sure you have ME/CFS without further info (hopefully you've been checked out for everything else), but it sounds like you may - previous viral infection, etc, are indicators. Were you unusually straining yourself physically/mentally after giving birth? You must have been! It must be exhausting! It doesn't necessarily start with a sore throat, or being ill - periods of stress/increased strain can precede its onset.

I'm sorry that you say your husband doesn't "get" it - that must be difficult. One feature of CFS/ME is that you cannot just ignore it and continue what you are doing - that will make you worse. It's hard to accept that you are sick - especially if the people around you won't accept it - doctors, family. Personally, I have been SO ill; I was very relieved at the eventual diagnosis, because it was the lesser of several evils. Despite how ill I was, my initial neurologist was far from sympathetic or helpful. They tried to tell me that I was anxious - I was a little terrified at first, due to the symptoms. (Buzzing sensation in my spine, extreme aversion to light/sound, couldn't walk, move around, etc... extremely weak, couldn't sit up, loud high-pitched ringing in ears...) And even then, he said "it's probably a virus, it'll go away" - it didn't. "Probably". Doctors do sometimes end up writing you off. It's quite difficult. The first thing to do if you feel you have ME/CFS is to build up some kind of support system of people who believe you, and understand, and that should include your husband. Perhaps you could show him some of the stuff online - it is a real illness. It is poorly understood, mostly because the brain is poorly understood at this point - but it is real, and it is not a question of people being lazy. You have to be careful, because if you over-stretch yourself while ill and vulnerable, you can become worse. The first time I had ME, it was SO minor compared to this, and I REALLY would urge anyone who even suspects that they have it, or have had it in the past and recovered, NOT to push themselves physically and mentally (as I did, just prior to becoming ill.)...

Anyway, I know it must be hard to take care of kids in this situation; I can barely feed and take care of myself, despite the fact that I have TWO people pretty much looking after me! If you ever need anyone to talk to or anything, feel free to message me etc. Feel better! xMia

 
Old 03-03-2009, 06:01 PM   #4
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venesha HB User
Re: Hi - Does Anyone Here Have These Symptoms?

Yes I have similar symptoms as you do with many more...

I have been on an emotional rollercoaster for the past 3 years...

I have been having a flare up that come and go:

My symptoms are as follows:

It starts out with pain in my neck when I move, swollen lymph nodes, night sweats, very senstive skin especially when coming out the shower. Alot of times I have to dance around the bathroom to get my skin under control, bruising easily out of nowhere. I had a huge bruise a couple of years that scared me because I did not hit anything, I also have lumps that appear which seem like mosquito bites that itch and leave a mark when they leave, other skin problems are hives and welts normally when I am anxious they typically vanish after a few minutes, chest pain, fatigue (feeling like my arms are really heavy and legs cant move, joint pain, severe gas.


Does anyone have these issues??

I have been tested for everything under the sun - ANA test for Lupus Neg, Thyroid Neg, Herpes Neg, HIV Neg, CMV neg. They only thing she stated was that I had mono at one point in my life but cant say when.

Please Help...I feel like I am going crazy and no one understands.

 
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Old 03-08-2009, 12:45 PM   #5
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Re: Hi - Does Anyone Here Have These Symptoms?

Hi there!
I too am sorry you are so sick.
I actually have been around and on this board for 3 1/2 yrs maybe less come to think of it it took quite a while to be dx.
But your story sounded so similar I had to post.
I have been sick as I said for 3 1/2 yrs. I too was fine one moment and then started getting symptoms. Although I did have mono as a teen, and suffered a bad case of food poisoning about one month before onset, I was fine. I have two young boys who were 5 and 7 on date of onset and I was working out 5 times a week. Stay at home mom. Planning ot work when youngest started first grade.
I first had a stiff back I assumed was my discogenic disease finally rearing it's ugly head, then I had really bad swollen lymph nodes on my neck. Finally after a few months I got scared b/c I started to have really bad night sweats and thought it might be cancer. This started in August and by February I had a lymph node removed for biopsy. Which to this day remains in the back of my head b/c the results came back worrime for b cell marginal zone lymphoma. So we sent the biopsy to a better institiute and it came back reactive, meaning no cancer but the b cells were hyperplasia meaning they had really multiplied.
With cncer out of the picture the work began finding out what was wrong. By then all symptoms were in full swing.
Low grade fevers, all over body pain, shaking, muscles twitching all over my body, disorientation, memory gone, word recall affected, can't sleep, tired, so fatigued I have to sit on a disabled stool to dry my hair. Usually too tired and weak for makeup. This list goes on and on.
With all of the testing and belive me I had an mri for ms, nuero conductive tests, bone marrrow biopsy b/c immune system is very very low, everything tested. Lupus, which BTW it took 2 yrs for the ana titers to become positive but still a pricey lupus panel was negative. I have been hospitalized for falling down dizziness, this btw is my most troublesome symptom b/c you literally cannot do anything when your dizzy, and chest pain.
I have been dx with Chronic Fatigue sundromew by at least 5 docs and specialist, Hashimotos Thyroiditis, Mitral valve syndrome and I guess thats it.
I see a specialist but sometimes wonder why. I have been on a special cocktail that worked at first, somewhat but now even on the whole cocktail which rather hard to keep all the meds instock at once and expensive!!! I still have been having the WROST flares. In fact I am just as sick now as I was when it started. There have been days that I think wow! I am fine today. But neverthe less it always rears it's ugly head.

Sorry my story is long. I just wanted you to know you are not alone. I too have the aversion to loud noises and my vision is blury around the edges, sometimes.

I only can say this, when you have a good day appreciate it!!!!! Lways smile even when your sick this sometimes helps negate the negative vibe of the sickness. DO NOT I repaet DO NOT worry about what anyone else thinks. Except immediate fmaily. I had to print tons of info for my husband to believe this silly sickness. And family. But for spouses it is a very hard thing to go through too. They have losy what was just as we have lost what was. Just as we mourn the loss of our old selves so do they. Children seem to be the best. They accept us and love us anyway!!!!! I too have lost many friends. And consider it a blessing. WHo needs firneds that don't get it. When I make a new friend I warn them completely and still canceled dates and changes of plans can temporarily rock even the most understanding people. I always want people to not think I am a flake but guess what I am just sick.
It takes awhile to complete the whole process, like when someone dies. You have to get through it tounderstand this is how life is. I mean maybe some people have come out of it. But in my case it is going strong still.
After having the cancer scare, preparing to go through chemo and possibly not be there to raise my little boys I do not ever, ok maybe sometimes, but rarely feel sorry for myself. Because ven though we usually feel like there are not catching something and we must really be dying we are not. THANK GOD!!!!

I am here any time you need to talk. Thank god you have people around you to believe. That is half the battle.
Love,
Deena

 
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Old 11-07-2010, 04:14 AM   #6
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Re: Hi - Does Anyone Here Have These Symptoms?

It sounds like Dr's egos are getting in the way of helping patient's here. Have you looked into flouride toxicity, which might explain the shower scene and alot of those symptoms? Some types of sntibiotics can be to blame, along with other environmental factors. Hope this helps...

 
Old 11-08-2010, 09:56 AM   #7
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Wink Re: Hi - Does Anyone Here Have These Symptoms?

Dear Mia J,

I've just found this site as I was researching something else and came across it! I live near Exeter in the UK and so thought that I would reply to you as I have had ME (CFS) for over 26 years now and thought that I had recovered for the last 10 years. However, since July, my symptoms have been back with a vengeance and I started to research as much as I could in the hopes of finding someone who could help me. I have found a fantastic clinic called the Optimum Health Clinic, < edited >. I have just started their 90 day course, which is psychology based and I am also in touch with one of their nutritionists. They think that I have adrenal fatigue, thyroid problems, neurotoxins and so it goes on. I have just completed loads of tests for them and it was one of these that I was researching when I found you. I am full of confidence and can only suggest that you get in touch with them. They are brilliant! Good luck and keep me posted as to your results! Regards, Vicki

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Old 11-11-2010, 06:48 PM   #8
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FarmGirl31 HB UserFarmGirl31 HB User
Re: Hi - Does Anyone Here Have These Symptoms?

Make sure u dont have Lyme Disease. It is VERY often misdiagnosed as Fibro, ALS, MS or CFS. Pls research to find a LLMD (Lyme literate MD).

I had 55 plus symptoms and 10 Rx meds and WRONG diagnoses left and right. Research Lyme and rule it out! Do ur homework because noone will do it for u, trust me.

Last edited by moderator2; 01-10-2011 at 10:42 AM.

 
Old 11-14-2010, 02:53 PM   #9
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Re: Hi - Does Anyone Here Have These Symptoms?

Hi....
you have Lyme disease without a doubt. You're going through what i went through to a tee!!! All the diagnoses you were given are all misdiagnoses for lyme disease. I promise this is true. If you only knew what i went through, you'd know i mean it from the heart. you need to see a Lyme doctor--NOT an infectious disease Dr. or any other Dr.--a LYME ONLY doctor. I have a few names, but dont know where you live. I'll be more than happy to give you them so you can start getting better. I feel horrible for what youre going through. So much misinformation out there about this disease and millions of people suffering in the process. Whats the current status of your health. Get back to me, I'd love to help you out....

~dee

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Old 11-17-2010, 08:30 AM   #10
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Re: Hi - Does Anyone Here Have These Symptoms?

Mia J and everyone else on this thread!!!

First of all, I am sorry to just bud into your thread but first of all I want to ask and I know that I know the answer to this but my brain just won't come up with it at the moment. What does ME stand for at the beginning of ME/CFS? I know the CFS stands for Chronic Fatigue Syndrome as I have been told that I have it!!!

I am totally confused and have been for 11 or 12 years because I have been in a lot of pain and have seen so many doctors and I seem to have been diagnosed with so many things that frankly I don't know what I have. Right now I do know that I feel like I am so alone and that doctors misunderstand me and I feel like I don't even have the right to complain or even bring up what is going on with me because I don't think that anybody understands truly how I feel!!!
I started out with and still have a lot of neck and shoulder pain and it goes down into my arms and hands and my hands feel numb and tingly. I don't have much energy and am not a lazy person at all but I just feel like my chronic pain never goes away.

I have been told that I have: Chronic Fatigue Syndrome, Myofascial Pain, Epstein Barr Virus, Mitral Valve Prolapse, Myotonia Congenita, Fibromyalgia, Chronic Pain Disorder, have Arthritis in my neck, bone spurs, have had an anterior cervical discetomy with titanium pins and plates on C5/6 6/7 for bulging discs or herniated discs and which was a fusion surgery and now I am told that I never fused and that one screw out of 6 is loose. Have been to pain management for years and have injections, ablations etc. and chiropractor for adjustments and decompression treatments for years. Right now how it stands is that because I feel depressed or anxious the new ortho surgeon tells me that he won't operate to fix surgery because I am too desperate to get help. "DO YOU THINK"!!! Anyway, I also have jaw pain and wear a night guard and have been told also it might be neuromuscular. The last time I was at the dentist (a new one) he asked me about my health and I told him all my symptoms and "again" someone had said to me "you sound like you have the same thing as my mother" get checked for "lymes disease". I had heard that several times before. My daughter has her own business and one of her client's daughter has Lymes disease and my daughter has been telling me the same thing. I have said to my GP several times "can you test me for Lymes" and he keeps on saying that I don't have it!!! I am suffering from head to toe. When I sit down and try to get up sometimes I can hardly walk, I stiffen up from head to toe, I just feel like I have been hit by a trick and I am so sick of these diagnoses that don't mean anything to me or anyone!!! I don't bring up to my family what is going on because frankly I don't think anyone wants to hear about. My husband and I have been married 35 years and he has been there for me but the last time he heard me crying he told me "that he had had it with me and that he was sick of it!!! I am 59 years old and this should not be happening to me. I guess I was trying to see if anybody thought that I might have Lymes disease. Sorry I have been on the Cervical Spine boards for a while and thought maybe I would read on here for a while. Maybe I should not be on here but when I saw Lymes disease I thought I would just jump in here.

Sorry to poor my heart out to everyone!!!!

Take care

Lyn AngelinMichigan

 
Old 11-17-2010, 09:07 AM   #11
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Re: Hi - Does Anyone Here Have These Symptoms?

To everyone: I guess I should have read my post over before sending it. There are lots of errors.

I can type (lol)!!!! Sorry that I poured my heart out!!!

Lyn Angel in Michigan

 
Old 11-17-2010, 08:47 PM   #12
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Re: Hi - Does Anyone Here Have These Symptoms?

dear Lyn,
you have lyme disease without a shadow of a doubt. Get yourself into a lyme ONLY doctor--none of these other idiots. Your story is all too common amongst people with lyme disease, as i too went through the same string of misdiagnoses and emotional setups as i got sicker and sicker. im almost 100% better (6 years later , but hey i'll take it lol!). please please PLEASE, find a lyme ONLY doctor in your area. or make the trip to the east coast to get to one if you can. I have 2 or 3 out here that are amazing and have patients come to them from all around the world. dont wait any more, youve suffered long enough. I know what youre going through--its very isolating to say the absolute very least. If you need any more info from me, please do NOT hesitate to talk to me about it as i would be more than happy to get you on your path to recovery and out of the hell youre in. big hugs to you for what youre going through, but get on it fast, and you'll see dramatic improvements over time... and screw all those other doctors....Lyme it is.

~Dawn...CT....

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Old 12-04-2010, 06:46 PM   #13
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Re: Hi - Does Anyone Here Have These Symptoms?

Dawn:
I have been suffering for 5 yrs without any answers. I thought possibly but i got tested through a company call mdl and everything was negative. Did you use igenix? I am not covered for that company. Also i am not that much of an out doorsy person. Don't know how i would really get it. Mine started with a viral or bacterial infection. Not sure. It was an upper respitory thing. I was never the same person again. I will list my symptoms:

1. Severe stomach problems, constipation, CHRONIC GAS, heartburn indigestion, (i have acid reflux and hiatal hernia)
2. Some fatigue but not sleeping just very heavy feeling in legs and arms.
3. Chest pain (off and on).
4. Very sensitive to chemical smells.
5. Balance issues (not dizzy)
6. Tingling on top of head
7. Neck pain and shoulder pain
8. Sound in left ear
9. Sinus drip
10. Phelgm in throat that comes up
11. Sometimes achy wrists
12. Sometimes low grade fevers
13. Anxiety and depression from being sick and not knowing what is wrong
14. Sometimes feel internally nervous
15. Some bone pain (elbows)
16. Skull bone Pain
17. Cold like feeling sometimes
FYI - Going through menopause also now
18. Always freezing. The only person i know going through menopause that is always cold)
19. Insomnia -
20. Lethargy
FEELING OF JUST BEING UNWELL EVERYDAY

My list goes on and on. I am just at a loss now for anything else.
I have been to millions of drs. You name it i have been. I have had almost my entire body tested. Cat scans, mris, sonograms. Constant blood work. I have been on millions of natural supplements from all the natural drs i have been through. i have done colonics, accupuncture, myofacial release therapy, message therapy, chiropractors, just to name a few. I have spent probably well over $10,000 on natural drs and supplements and all the other stuff that my insurance company did not pay for. That does not include the health insurance premium that is sky high. I still have not answers. My head is tingling like crazy right now. I don't think anybody ever recovers from these syndromes, what ever one it might be.
I have hashimotos (autoimmune of thryroid).
When i went for a cat scan of the brain for the tingling they saw white matter on the brain.The neurologist does not have an answer. He had me go for further testing to see how the blood is flowing and everything was fine. Also not ms. I have two more tests from him scheduled for next week. Also it seems that if i overdo anything i am worse the next day. I went crazy for Thanksgiving dinner and it took me two days to recover. If i go on a vacation, i usually come back either with a stomach virus thing (diarrhea) or i am exhausted for a week. I just can't get ahead. When one symptom leaves another one starts.

Thanks to everyone who might be reading this. I guess i am just venting more then anything. My friends all think that it is emotional and i know my body and I know i am sick. Like everybody else says on these posts. NOBODY TAKES US SERIOUSLY. Hope somebody is getting recovered out there. If you are,please let us know what is helping you.

Best to all
LaLa

 
Old 01-12-2011, 09:21 AM   #14
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wigs123 HB Userwigs123 HB User
Re: Hi - Does Anyone Here Have These Symptoms?

I have CFS. I also have TMJ. Tmj was causing me ear pain. I was clinching my teeth all the time and didn't know it. I seen a chiropractor for this. He cracked my ears and showed me stretching exercises. Turn head left count to 10. Turn head right count to 10. Tilt head left count to 10. Tilt head right count to 10. Tilit head front count to 10. Tilt head back count to 10. Do this a couple of times a day. Also massage next to your ears down your jaw bone. Massage your temples. It took months for this to work because I had been clinching my teeth for so long. With CFS what helped me is magnesium. Check what the daily dosage is for women I'm not sure. I take 500 mg. I believe 420mg daily is for a man. This could cause diherea. I also bath in Epsom salt every day and soak my feet in it at night. Epsom salt has magnesium in it. Bathing really helps me in the morning. Eating was important for me. I didn't feel like eating when I first had it, but I noticed when I ate I felt a little better. I eat 4 times a day. Breakfast, brunch, lunch and supper. I also will snack in between on fruit, yogart, nuts. If I don't eat I will relapse for 2-3 days. I try to avoid junk food. Pizza, pop, chips no alcohol. These make me feel worse. I stertch every morning and night. I read some people with cfs have old injuries to wrists, ankles, hips, shoulders and certain movements can trigger it. I was sweeping the garage one day and instintly got tired. I sepperated my shoulder over 20 years ago. I figured out this was triggering my cfs. I started stretching and massaging it, also seen chiropractor for it. It took a few months to loosen it up but my symptoms slowly improved. If you have any old injuries try to stetch and massage them. Sleeping I use a nasal strip at night and sinus flush. This helped me get a better night sleep. I still have symptoms everyday, but I've been able to start doing basic everyday things again. I hope something in here will help you.

 
Old 01-17-2011, 09:33 AM   #15
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MotherofPiper HB User
Re: Hi - Does Anyone Here Have These Symptoms?

Hello Deena,

Please know that I was very sick a couple of years ago as well. I would get headache, then about 30 minutes later, brain fog would set in...I got so bad that I couldn't remember people's names I worked with or finish a sentence I started. I would trip walking along flat ground, I fell on stairs, I fell off the toilet...I shuffled my feet like a very old person and just fell really bad...really tired and depressed because I couldn't keep up with how I used to be physically. I always had the sensation that my head was floating off my body to the left and I would fall to the right. I walked down the hallways at work with my arms out to the side to catch myself on the wall before I fell completely on the floor. Pretty embarrassing...I have high levels of Chronic Epstein Barr and have had problems with my nerves since I was seven years old. Rashes and shakes all of my life. After many years of feeling bad, I finally found a doctor who understood CEBV and Chronic Neurotoxin Disease. She recommended that I read the book "Desperation Medicine" by Dr. Ritchie Shoemaker which really opened my eyes. She put me on the drug therapy that he developed and I was so much better in about a week. After all the years of health issues, it was amazing to me...It has been a little over two years since I was diagnosed with Chronic Epstein Barr and Chronic Neurotoxin Disease and I am functioning in the world again. My CEBV levels have dropped from 2000 down to about 430 which is still high but I don't hurt all over anymore and I believe that is from the levels dropping. My brain fog isn't around anymore either...except if I get into a building that is toxic to me...then I get a headach, then brain fog and then I start staggering all over. It takes quite a while to come back but I take toxin meds twice a day and that helps...

Please believe me when I tell you that there is hope and it is so important to just keep searching for a doctor who can help. I finally started see my Oteopath she eased my mind and gave me hope in ten minutes of talking to her. I started meds right away and immediately began to claim back my life.

You must be very proactive and keep trying to get answers. Never settle for anything that a doctor tells you without doing a lot of your own research. Besides reading the book, "Desperation Medicine", you can also check out the website,< edited > for more information.

Wishing you well,

Jude

Last edited by hb-mod; 01-17-2011 at 09:40 AM. Reason: Please do not post unapproved website links, per Posting Policy. Thanks!

 
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