Thanks alot Lisa. Considering private MRI testing. Good luck. Please look into lyme disease and get tested preferably Western Blot method.
Hi David,I have looked in to Lyme disease but I know exactly what happened to me .I woke one morning 31st October with the worst headache ever,I had a virus and never recovered.By the march I couldn't walk and after loads of tests and time I new it was c.f.s and myasthenia I've got a feeling that I might have m.s as I have most of the symptoms and having CFS for 7/8 years I know what's normal pain and symptons for me.These new symptons are different ! What's the western blot test for??
Hi Lisa, lyme disease can cause all of these symptoms, like THAT is the root of what is causing it, whether it be myastenia or MS. These are just labels, the doctors tell us they don't know what causes these things. The Western Blot is a test for lyme. Lyme is called the great imitator beacause it mimicks so many other conditions like MS/ME etc The more i research it for my CFS/ME the more it looks so likely it is what i have being super fit outdoors guy now i struggle to leave the home. So i have to go with testing for lyme and hope i don't get any worse.
Oh I see now,I thought that because I had a virus obviously your immune system kicks in and it still thinks it's fighting the virus...who knows eh?? I just know and it sounds like you too that I won't let it get me!! Don't get me wrong it does get me most day's !!im my own worst enemy too because you don't know from one day to the next how you will be....I make the most of good day's and live for the moment...if I can do it I will..if I can't then wait till I'm good then do it. Just don't ever give up hope because then what have you got....and David I know it's really hard but it could be worse...when I was first I'll it was the same time jade goody off big brother got diagnosed with cancer....and I thought omg that could be me...so yes it's hard to live this life now but chin up!!keep positive xxxx
Thanks for the positivity Lisa.
Yes, I've had numbness, tingling, and shooting pains in my feet, legs, and now hands. I'd be very surprised if your symptoms were anything other than CFS/ME. I raised the possibility of MS with my doctor, but he said the way my symptoms presented did not sound like MS. He offered to refer me to a neurologist for further testing, but I declined. And yes, I've had CFS/ME for a number of years. I had a relapse recently, which brought onset of these new "tingling etc." symptoms.
I've had CFS/ME for some years. I also had low blood pressure and racing heart. The racing heart is referred to as POTS (postural orthopedia tachycardia syndrome). So here's what I did to relieve both symptoms: Lopressor (a beta blocker) for the racing heart; Verapamil (a calcium channel blocker) for the low blood pressure. In normal people, Verapamil, and maybe Lopressor, would lower blood pressure. In people with CFS/ME, the meds can have a paradoxical effect, as they did with me. Many doctors don't know this, and don't understand this effect.
Thanks Jackie.
And also what is your walking like ? Do your legs feel very heavy ? I had a shocker of a walk this morning, walking 1 mile for groceries, had to stop twice for a breather.
How far can you walk, are you very slow and unsteady ?
Thanks
Yes, sometimes my legs feel heavy. Also, sometimes they feel weak. And sometimes it's like I almost feel like my brain signals aren't getting through clearly to my legs, like I don't have full control over their movements. Hard to explain. Yet I do control them. As I mentioned, I've had CFS/ME for some years. My last relapse brought all these symptoms. Because of my fatigue, I can only walk for a few minutes. I take it very slow, but I'm pretty steady. Again, David, be careful. There's a fine line between getting some excerise and doing too much, causing symptoms to worsen. Walking 1 mile is a lot, and if you have to stop twice, you might be pushing it. Since your onset is fairly recent, if my memory serves, this is a really important time for you. You have every chance of the illness simply going away, and you want to maximize the possibility of that happening.
Thanks Jackie. I go to bed every night hoping and praying i wake up renewed. This body feels like a dead battery. I'm so hoping the TCM treatments can help.
So does TCM mean "traditional Chinese medicine?" Whatever it is, I hope it helps.
Yes.
hi guys,
this is interesting. Been battling this nightmare since last september. However I have had some good days in there, which gives me hope. Wake up totally exhausted, can sleep 10 hours, then sleep another 2-3 easy in afternoon.
Was always active, 41 Yo Male, 85kIg, rest heartrate around 52. no blood pressure issues etc.
I have ordered the genova CFS screen, results due in about 2 weeks, hope to god they show something. All blood work totally normal as with 95% of us.
Every day is a struggle and its soul destroying, almost like life passing you by.
Have tried every combo going, wellman sport tabs, probiotics, L-glutamine, grapefruit seed etc, paleo diet, no sugar, you name it.
Get other weird symptons along with the fatigue, a rush of blood to the head, a fast heart rate for a minute from nowehere, sometimes increased thirst.
David I had some minor tingling in my hands, my case and yours seem pretty similar.
Whats an elisa test guys?
Thanks for the help and support to each other.
Greg
Jees, this feels like i feel also, you almost pray before you sleep that the next day is a new start
Hi Greg, thanks for that. I had been considering the Genova Chrinic Fatigue screen. I did their comprehensive digestive stool analysis+parasitology and it showed an imbalance of gut flora, so that was a clue and i am fixing this. I refuse to believe the GP with ME/CFS there is no test to show what my body is not doing proprely. To be this ill and have no test to show is impossible. It's a cop out for them if you ask me. They are not trying hard enough ? Keep me updated on the test. I have been doing Traditional Chinese Medicine the past 2 and a half weeks and i have to say it is helping alot. Really feeling it this morning, that my old self is returning. At the TCM clinic they stressed to be patient (which i what i am. a patient, interesting LOL) to re-build my chi and whatever had happened to me has caused my organs to age more rapidly, so basically you are alot old on the inside that you appear, hence why i have said and others 'i feel 94 not 34' and my body is proof of that, EVERYTHING slowed down, i could barely walk prior being a high level amateur triathlete for 6+years. It's been REALLY hard, harder than any event i've ever done, but i never gave up hope i can get myself back, i think it is happening. The next few weeks are crucial. One day at a time. An ELISA test can be used for various things, food allergie etc but in the context of the prior discussion it was in relation to lyme disease, as there are many peopole diagnosed with 'me' who actually have lyme.
I'm kicking myself because i am thinking if ONLY i had tried top TCM clinic sooner ? Early days but extremely promising results thus far.
Hi david
Thats brill.
I must start tcm today.
At doctors todays more stupid crap I expect.
I think gut flora could be at the centre of all this.
Mine all started after a course of metrodonzale.
I have tried all sorts of probiotocs though.
Cant hardly move today legs like timber
Hey Greg, i've never been to the GP so much the past 6 months. Even phoned for an ambulance TWICE because i thought i was about to die, that my entire body was turning to stone and my heartbeat felt so weak like that of a 100 year old man. IReally fed up with it all, in terms of being labelled with CFS and offered no NHS treatments whatsoever besides anti-depressants, not even physiotherapy as i said my muscles were wasting away. I've since managed to summon the will to respond to this, i force myself out for a daily walk for 30-60mins. This morning i did this, with a backpack full of encyclopedias 45 mins and walk the local country trails gingerly. My upper body has deterioriated but i am not letting my legs go the same way. I think with gut flora they are a big part of the puzzle. It seems in my case the gut flora imbalance is a SYMPTOM of CFS, it's not WHY i am unwell, what caused it. Look into doing an intensive course of VSL3 probiotic one month or longer. As you know with CFS there is MULTIPLE issues. That's why i believe the TCM approach is best. It strenghtens the entire body, every organ. The amount of needles the TCM doctor placed in my HEAD one session was a sight to behold. But subsequent sessions have used less needles. I have noticed my digestion is now back to twice/day whereas since becoming unwell it was only once in the morning. My body is also gaining weight for the first time. I know what you mean about timber legs. Personally i feel i've just made it to the TCM clinic in time, there have been some mornings where i can barely walk and it was a truly shocking experience, considering i had been a marathon runner/triathlete prior who never thought for a second this could happen to this. My normal routine was a 10k run or longer most mornings, sometimes twice/day.
I've gone from one end of the spectrum to the other. Now looking to maintain that sweet spot. With TCM seek out a traditional doctor from China, i think they are best. My own has 30+ years experience, former tai chi world champion. He's noticing changes in my well-being. They are VERY perceptive and can tell ALOT aobut you just by looking at you.
Anyway still early days but i am feeling so much more optimistic that the end is in sight for me. Still have alot of work to do. CFS is in my view a really serious illness to recover from takes some time, but with the right protocols definetely 3 months max for huge benefits. I'll keep all updated on my TCM progress. This is only week3, going into 6th session of acupuncture.
well the docs are absolutely no use, they cant treat CFS, i rejected anti-depressants, I am a happy go lucky guy when I am right. I told her how can i wake from 11 hours sleep totaly exhausted and expect it to be phycological, totally BS in my case, it 100% physical.
I had full universal blood check done by randox in n.Ireland in oct, every blood test known to man, nothing showed.
The CFS screen is saliva and pee only, shows the complete physical energy cycle, acids, ATP etc, much different to normal blood work.
I also used to be a 2KM morning swimmer, back last year, until bout september ish.
Booked myself for TCM today, at least now I have 2 things in the pipe, the TCM and CFS screen,
What beats me, toward end may I had 8 good days in a row, I cant know why it leaves me.
Last 2 weeks has been hell.
Another reason I believe its gut, is last year I took antibiotics, then thrush, probably internal also, After I took nystatin for about 2 weeks, I got recovery period in dec and jan, but it came back with bang.
Nystatin now has no effect. May have been co-incedental but i think it could be linked.
This why TCM look at your tongue, my is very geographic lots of patches in an otherwise quite furry tongue.
Im glad i found the forum, I think we need to have constant angles to tackle it and always have something in the pipe for trying to get some sort of resolution.
Best of luck Greg ! I attend the TCM clinic twice/week for acupuncture which was advised rather than one which i have been told would be useless to properly treat CFS. I asked about going 3 times and they said NO, twice is perfect. They have said to me my health is not that bad, i just need a little nudge. So maybe CFS is a deceptive illness. Everything about my clinic has oozed quality and genuine patient care. Alot of people thought i was wasting my money as it's not cheap, about £130/week but TCM makes perfect sense to me. I also drink a tailor made herbal tea 3 times/day 30mins after meals. I think you are likely in an identical situation to myself, TCM theory explains through chronic stress then compunded further by a virus/infection, further weakening the body, our body uses up a great eal of internal 'chi' to fix the problem, trouble is if we are low to begin with it won't be able to go all the way and then after we don't know how to accumulate more chi to solve the problem, we are left in limbo for god knows how long ? This is what i am thinking. Can't wait for my session at 2pm. I moreso feel the effects the next day rather than after, and it is accumulative by my short experience. Another month or 2 of this and i should be good as new.