RELAPSE

Brain and nerves
1

Hi guys,

Suffering form initial diagnosis 'post viral fatigue' 6 months. The past few days have been relatively the worst of the entire time, the fatigue almost completely disabling. Legs feeling very heavy, body in general. Have any other CFS sufferers experienced this many months into the illness. I am awaiting on my appointment with the haematologist, maybe something can come of that. I felt so bad yesterday morning I called an ambulance, I truly thought I was dying, and maybe I am. Anyway was a lifelong endurance athlete pre Nov213 now a debilitated fatigued wreck, I am almost unable to leave the home. I had been taking a vast array of supplements lately, and had a two day break but maybe that was the reason I was feeling so bad. So getting back on them and I will report back if I feel better. My better is still not normal. But just when I didn't think I could get any lower, this. Also does anyone suffer from bloodshot eyes because of their CFS, I did not have this before and it developed just about 3 weeks ago. Thanks. What a nightmare !!

2

Sorry to hear your feeling so bad David , this happens to us for no reason we can think of & takes our life yet we still are living ! The fatique is unexplainable to a NORMAL person !!! I think stopping any thing you were taking regularly even if they were supplements will have an effect on you , you need to talk to your dr explain what you've been through & tell him about your recent set back there's answers in there somewhere ! I hope they can help you soon I know what this illness makes you feel & how much you miss the old you it can put amazing pressure on you & family ! 

Freinds dissapear after awhile because it's so hard to understand ! I've been told by my own mother inlaw   For goddess sake you will feel really ill when your old !!!! That broke my heart  , so please try not to worry just talk to as many drs as possible ! Keep knocking on that door !! Good luck !

3

Thanks Dawn, yeah i'll knock down as many doors as i have to and spend as much money as i need to fix this, aslong as i can remain vertical. At present i'm only 6 months into this and i know i am not as bad as some people but time is of the essence. The medical system, the NHS moves so slow. I said to them at the hospital yesterday, sincerely, with real desperation, i think i am dying. They didn't want to know, they said they would fast forward my haemotology appointment but they didn't. I called the hospital to say i was really bad, again think i am dying and i was completely ignored. SHOCKING !!! Do i have to die first then receive treatment ? What constitutes as an emergency ? DEATH but by then it's too late. It's been frustrating for me as i have spotted so many early signs which are completely ignored. I never thought i'd find myself in this situation as this time last year i was training for the Scottish triathlon champioinships. I actually ran the fastest 10k run split of all athletes. LOL Now i can't run 10 yards. My BIGGEST problem is the diagnosis. i need to know 1000% i truly have CFS to deal with it, at the moment i am being tested for aids, lyme, myastenia gravis and then the haemotologist.  so much going on and i'm going a little mad. My life is completely over. Yes, family is strained, friends ? They're all doing there own thing and i don't blame them. I'm still determined to fix this !!!!!

4

Hi David

My commiserations to you on your situation.  Its a real mystery this fatigue.  I read that its something to do with  hypothalamus burn out but not being medically knowledgeable I;m not sure what the implications of this are.  Glandular I think.

Have the docs said you have CFS?  You mentioned the initial diagnosis was post viral fatigue and I am not sure in my mind when this changes and becomes CFS. 

Also what virus did you have prior to the onset of fatigue.   

My son is waiting for the second battery of blood tests.  The first lot over a year ago were normal.  The fatigue went away for 10 months and came back 6 weeks ago.  He hasn't been diagnosed with anything yet.  He is able to work - only just - but very little else.  His GP has not been very useful.  Has yours?  I would expect a referral to some kind of further testing but he was merely offered anti depressants which he turned down.  Although depression may be something that will develop with the condition.

I don't know what the bloodshot eyes are caused by.  Hopefully someone on this site will know.  Bye for now.

5

Sorry David I have just read your earlier post which I missed somehow.  Its good to have this site to come to.  You are not a quitter by the sounds of it which is a great thing.  

My experience with the NHS is that you almost have to be one step ahead of them - difficult when you're suffering as you are.  Have you any support from family or friends ?  

6

HI David, I have had this 'nonsense' for past 4 years and had a battery of tests, only being diagnosed last summer! Relapses are the pits and sometimes can last for days/weeks/months....it's the uncertainty thats annoying. But remember, there is an end to relapses...try to take more rest breaks but its equally as important to keep going but perhaps break up your activity more.? I have just walked 10 minutes and already my feet and left are partly 'numb' and weak and my arms and shoulders are intensely aching from doing just 1 hour of filing!! Im sure as you know, there are good days and bad..its just remembering you will have good days on the days that are bad! I think that makes sense?! Bloodshot eyes is a new one on me, however I do get sudden stinging and tearing eyes that lasts for a couple of minutes for no reason?? JK

7

Dad is supportive, and that's it really. The NHS has it's good points and bad points, the people within the NHS have been excpetional really, but the system it a let down i feel in terms of waiting times. I need to see a specialist, which i will do in a fortnights time. I'm feeling reasonable at the moment, got 30mins of warm sunshine, rare in Scotland. I found out the local hospital has an ME supprt group, last Tuesday of every month so i may go there in the future but right now i'm focusing on building up some strength. Just think coming off the supplements and possible catching something as my WBC are low makes me feel much worse.

8

Hi Sue, i am 'post viral' at the moment. Come May that will be 6 months so it could change. I really don't care, i just want to feel better. I continuall talk about thie uneasiness in my chest. I need to get upto the hospital for my 24hr ECG, maybe i have myocarditis/pericarditis ? The cocksackie B virus does specifically target the heart which i find very troubling, some others too and it can take months to reach it. So at the beginning i just felt unwell, very off, then after about two week of persisting feeling REALLY bad, so it does seem viral onset started all this and made worse but the fact i really did not slow down much in the beginning for at least 6 weeks, i was still running 10k, working in a warehouse, what an idiot !!!!! I am going to do a private cocksackie B viral test, £80 is reasonable beacause i believe there can be several routes to CFS, so it's a constant process of elimination and i have a big list which is being chopped down by the week. My GP has been really good. I am awaiting test results for LYME disease, whish is posible being an open water swimmer and having travelled into Europe last year. Oh god the anti depressants, yeah i was offered those by a locum standin doctor and i just looked at her, you cannot be serious !! Forget it, they do not work for me. What does improve my mood is the herb rhodiola which is also a mitochondrial energy booster, so i am taking that instead. Look it up. Works fast with most people, for me within a week. I realise my current state if i have genuine CFS is going to take a multi level approach to work. Ask to be referred to a haemotologist or another specialist. My appoinment cannot come soon enough and i am on the phone everyday asking about cancellations. Since the onser of my condition i have always had the fatigue and just lately it's been on full blast, but i can think it might be bcause i stopped taking all supplements, so i am back on them today.

9

Funny you should say about stinging eyes mine are terrible in the mornings & evenings my right eyes runs for ages yet my left eye seems gritty & dry !?!? I've worn glasses all my life & I've told the optition but I have the start of Golcoma in my right eye which is static & dosnt need treatment ( I haven't had side affects with that ) but she can't tell me why it's happening it may be cfs ? Ohhh another symptom I've lost count !!! Take care all x

10

Thanks JK. You were as fit as a fiddle before all this right ? like me ?

My eyes are not mega bloodhsot but to me i notice quite a significant change, with the left looking more 'damaged' than the right with also excess water in both. Liver function tests are normal. Optician says i have better than 20/20 vision and no-oen even entertains the red lines on my eye whites, yellowing too, which i DID NOT have before PVF. It's only been a recent development within the last 2 weeks. I also notice my lymph nodes can go up and down, really small, such a strange multi faceted illness. Especially being naturopathically trained this i guess is my ultiamte lesson in ill health. AND can i sort this ? If i do i'll fix the lot of you too, for FREE, believe it !!!! Where there is a will there is a way right ? Today i also ordered this PQQ supplement shown in studies apparently to boost mitochondrial regeneration, so we'll see how that goes.

11

Hey Dawn, yeah optician said i had a hige nerve from the scan and would sometimes consider this to be glaucoma, but since i am young (34) he is letting it go because the eye pressure was normla, 17 i think. I used to have nice big clear whites eyes, i have felt sometimes with CFS them almost that the eyelid feels heavier and closes down. I think the extra nerves etc arein fact a PROTECTIVE mechanism of the body, the optician sais this was likely, AND because of viral exposure the body grows more veins to enhance blood supply to the eye and to protect at all costs the IRIS. So al in all CFS is a complete nightmare, i do not want to learn to live with the illness forever, i want to get rid of it !!

12

I know David it's so hard to cope with , hang in there I promise it will improve  keep your chin up ( if you've energy !!).  Like I said knock on those doors !! I've got so many hospital appointments that  I have to put everything on the fridge with the callender or I wouldn't have a clue Whitch way was up !!!!

just had both hands done( carpul tunnel ) 3 months apart & I can't say it's any better still no strength & pins & needles !!! I turned up at the hospital one day & I was ment to be in the dentist !!!! I'm 52 next month & I think I'm going senile !!!!! But I'm still here & still kicking ! Take care x 

13

Hey Dawn, i'll do my very best. My calendar has never been so marked, with appointments etc If i get new symptoms i mark them down. I just hope yesterday was THE bad day and i do not get any worse, today i have been better but far from normal. Hoping to improve again tomorrow so i can get to the hospital for my 24hr ECG, see if there is any issues with the heart. THEN i want to be tested for lupus. My haemotology appointment can't come soon enough and i am calling everyday to see if there have been any cancellations. I'm desperate to have a proper diagnosis, if it is CFS then game on, let's deal with this. I feel like i am being slapped around by the invisible man, you know. Take care.

14

I think the first few months of fatigue/exhaustion are critical in listening

to your body, which is saying rest rest rest,this WILL shorten time to recovery

from years to possibly months, NO exercise whatsoever, even on good days.

most of the city firms are introducing yoga to cope with stress, your job routine

has to change ie when you can manage a few hours work, then a couple of hours

sleep, I really think cfs/me is picked up when your body is at a very low point

from physical work/exercise, I am trying to slow my daughter down who insists

on doing triathlons,marithons etc, she is burning herself out, hard physical

contributed to me, picking up me,  I changed job completely working on  a

computer from home, and am better off financially now, but the first couple of

years where tough, I have not taken any tablets/anti depressants etc

you will recover be patient

15

Hi Mike,

These days i can only walk, and very slowly and not too far. Even last week i could walk no problem for an hour. So exercise is almost impossible anyway. My energy is so scant there is no way on earth i could have any sort of job. I agree i became unwell because my wareouse job starting at 5am in the morning, very physically demanding, i cycled to work, cycled home. I then trained for marathons and triathlons inbetween stressful family issues. I thought because my diet is so good and i had been doing it for so long i was indestructible. What an idiotic mindset !!! You do need to show your daughter my problems, she needs to stay balanced with her lifestyle. I was pushing my limits constantly and this illness is the result. So thanks for the encouragement. As an endurance athlete (former) i found some herbal supplemnets helped with my performance, rhodiola and cordyceps, your daughter might want to try them if she insists on training, and i am sure she will, i would not stop for anything. These herbs can have protective qualities to the immune system and adrenals, the kidneys play a crucial role within the body and they noursh the kidneys. I had my sights set on Ironman 70.3 before i fell ill. I could run a sub 3hr marathon, 1:15 half and swim 5k in 80 minutes. I cycled from Glasgow to Edinburgh (56miles) in under 3 hours. I've done a few back to back swimathons. Personally i feel my strenuos job (2+years) PLUS training threw my body over the edge. I also feel with an easier job i could have still trained as much as i wanted, but the combination has been too much. I really do hope i can recover.