CAN SOMEONE HELP AT ALL? CHRONIC FATIGUE SYNDOME / CFS

Brain and nerves
1

Dear All ,

To all those genuine sufferers out there, I say your not alone, and never feel that your alone, but my question today has a different edge to it.

It's about others who those close to them into believing that they actually have CFS when indeed it is my belief there is nothing wrong at all, I know it's an awful condition to have, and to think that someone would actually want, to have this condition for no reason just shocks me.

My question to those others out there with CFS is simple.

What are your physical limitations day by day?, would be interested to know how it affects your

mobility in getting around, and what level of pain you get from CFS?,

I know this can all vary from Patient to to Patient but at the end of the day the symptons should

all be the dame, just different levels of intensity.

My point is with your CFS,

but could you ride a bicycle over long distances, or run for a long period of time?

could you participate in any form of extreme sports whatsoever?

you have to bear in mind the person Im referring to above does all the above, and then declares

himself to have CFS.

COULD YOU DO ANY OF THE ABOVE WITH YOUR CFS?

I would just love to know your thoughts on what you think, tell me how your CFS

effects you, im just sick and tired of hearing about this friend with CFS and how

they feel every day, and then the next breath doing all these activities.

Would someone be kind enough to ease my mind, or confirm my fear about my friend

and that he indeed trying to lie to everyone.

2

As is mentioned on many web pages about CFS, the challenges that CFS patients face are hard to understand by healthy people. One of these is the problem that this disease is quite invisible to others, yet if you'd follow us through the day or week, you'd see how much fun we have lying in bed. We didn't choose it to be that way, it just is.

I myself did 500 km cycling during one holiday week in July. I had neither muscle pain nor strong fatigue during that week, but boy I got sick afterwards. I was nearly comatose for two days, and thought I would not recover properly for 10 days. After that I have been very cafeful. Now I cannot cycle even a short distance to work without getting ill. So how come I can cycle on holiday and then crash when I get back home and to normal life? According to the CFS specialist I'm seeing, this is indeed possible: your high spirits /holiday, etc. can keep you from crashing for some time, but eventually you'll have to pay, and the price is heavy. I do not have strong joint or muscle pains, just a persistent elbow pain which is gradually spreading to my fingers.

By the way: graded exercise and CBT are total nonsense and have even been shown to be harmful to patients. As my own example shows, getting ill is not related to physical fitness in any way. That means you cannot improve your health by trying to improve your fitness, unfortunately.

3

Reddevil1968, Although I do not have CFS, I would like to tell you a bit of my own personal experiences. 3 years ago, I was in the similar mind set to yourself as I had never heard of the condition. I met someone online and we started to message each other. She had had severe ME for over 14 years, something I initially couldnt understand as she always seemed to be very bubbly and full of energy when I spoke to her. Even when I started doing some research I wasnt sure about it.

After a year of being in contact we met each other and ended up dating for a while. Not dating in the normal sense, rather I used to go up and we used to have dinner at home and then she went into a rest for a bit, then we spoke for about 30 mins, then back in a rest etc... It was not something I had ever experienced before. What people without the condition take for granted can be a great deal for an ME sufferer e.g. after she brushed her teeth, she felt exhausted and had to rest for 30 mins before being able to get dressed and then she would have to rest again as she would have used up all her energy getting dressed etc...

Anyway, quite often we would get carried away and talk for more then her allotted time and she seemed to be fine, oh boy was I wrong. The next day she would, as Avocado mentions, pay the price and would crash all day. Quite often she would try and do more than she could handle by going into adrenaline mode, paying for it after.

I have seen her when she has been in a bad way and I really do feel for her. Due to her bubbly-ness and wanting to do things that non sufferers take for granted, she always does more than she can physically do, so people may initially think she is fine but they do not see what happens after as a result.

She has had days where she can walk for 3 mins to her parents house and also days where she cant even get out of bed.

I have met a lot of people with ME in my own little crusade to see what I could do to help her. Not everyone is the same, not everyone has the same symptoms. It is a very complicated condition indeed. I would tend to agree with Avocado in the fact that trying to improve your fitness will not necessary help. I even met a poor little 13 year old who could not handle the sunlight and could only get out of bed for 1 hour a day so would spend the whole day in a dark room, how her parents cope, I do not know.

I came across a video which was produced by a mother and brother of a ME patient especially to help educate people as to the condition. It is an amazing documentry that may help you understand it a bit more. The film is called Voices from the Shadows and a link to the website is http://voicesfromtheshadowsfilm.co.uk

Please have a look at the film and it should give you more of a realistic insight into ME. It is free to watch online.

I used to be a sceptic when I first heard about ME but now, after a bit of research and my own experience with the ex, plus meeting other ME sufferers, I realise that it is not a nice condition to have and I would not wish it on my worst enemy.

Looks can be deceiving, smiley faces can hide a multitude of issues and its like the old saying, never judge a book by its cover.

4

I am a male 48 years old from India ME/CFS patient suffering from upper back ache, palpitation, always feel tiered for the last 30 years since 1983 when I was doing my graduation. I am married with one 13 years daughter. I took treatment from many psychiatrist. One psychiatrist trained me self hypnotherapy. I was better for sometime. Then few years back again consulted one more psychiatrist. As per his prescription I am now taking medicine and practising self hypnosis. I am managing my life somewhat. I could not satisfy my wife. She expects me to be a normal person. But I could be. I accept these suffering and bear it. I have no hope to get cure. I pray God to help me to bear these pains.

5

Joerathinam: It is not possible to cure a neurological disease by psychiatric treatment. CFS/ME has been recognised by the World Health Organisation (WHO) since 1969 as a neurological disorder with the code G.93.3.

In some parts of the world, LDN (low dose naltrexon) is being used effectively as a treatement to CFS. The correct dosage would be 1,5 mg twice a day. For some people, even a smaller dose may be enough, whereas in larger than 4,5 mg/day doses this medicine becomes ineffectual for CFS patients. I hope you could try this medicine in your home country. Yet it will not work for all patients, unfortunately.

6

Avocado: Thanks for information and suggesting to use LDN. Now I am taking Venlafaxine 187 mg per day. This medication is a selective serotonin and norepinephrine reuptake inhibitor (SSNRI), prescribed for depression, generalized anxiety disorder, social anxiety disorder, and panic disorder. It increases serotonin and norepinephrine levels in the brain that help to maintain mental balance.

7

I have M.E. it is a very dibiiltating illness. I do go on my bike but not too far. I need to rest afterwards. I rest every afternoon and go to bed early. If I over do things like when I go on holiday it take me some time to get over it. I do not use my M.E. as an excuse for not doing things, I just suffer afterwards. I try and pace myself it is the only way I can cope.

Most people do not understand and I thnink they think I haven't got M.E. but I assure you I have and I which I hadn't

Alison

8

Hi

I have been suffering (literally) with CFS for several years now. I'm a twenty something year old and I like to keep active, although finalising my PhD has eliminated any chance of physical activity recently.

Prior to that I would play football, squash, basketball and mountain bike at the weekends. These are quite physically intense sports. I have no problem keeping up during the activity itself. In fact, I consider myself to be as fit or fitter than some of my contemporaries. However, the payback was pretty severe. A hard cycle in the morning meant I was pretty much wiped out for the rest of the day and for sometime the following day. There was no pain, but fatigue and the feeling of being able to sleep for a whole day or two manifested shortly afterwards, along with brain fog.

For me there's a definite trade-off between staying in touch with friends and keeping fit and suffering the repercussions as a result. Personally, I'm prepared for some occasional suffering for a good day out with friends.

9

I am a sufferer of CFS. I came from an athletic background training 3-6 hours a day competing in endurance and triathlon events. I was quick too! My training changed where instead of recovering within a few hours became a few days then a few weeks. I ignored all the signs and went for a 120 mile spin with some friends on the road bikes. I woke up that morning and the rest is history. My worst point was, I was unable to talk or sit up in bed. After 3 years I am limited to around 20 metres and out of breath after 5 metres. I still have my muscle definition except the muscles do not work and feel like they are destroying themselves, literally pulling themselves apart. Lightheaded from talking from too long too. I used to go out and run that hard until I could not move for the pain or go swimming in icy lakes to get a kick out of extreme stuff. Now going to work and sitting in the office is extreme for me. Everyday I remain positive that I will get better and enjoy life with much restriction. If I did not my condition would be unbearable.

10

I suffer with ME and got to a point where I wouldn't just get payback for an active day, I would literally be exhausted within 10 minutes of waking up and ended up in a wheelchair for a long time. I agree that it's definitely a neurological condition and not something that a psychiatrist can help with as MS runs through my family and my symptoms and those of my mum with MS are very similar and also are treated with similar medications. My mum's MS is progressive and until recently she was deteriorating and, as I mentioned earlier, I was in a wheelchair but we've both changed our eating plans completely and have managed to both improve enough that we made Christmas dinner together this year and I very rarely see any symptoms of the ME as long as I dont slip back into old habits. Once I recognised that 80 percent of the meals I was choosing to eat weren't actually food and did something about it I have unclogged all of my organs and feel like I've been reborn. I cant tell you what it feels like to come out of the dark hole that is CFS/ME but I know I'll continue doing everything in my power to stay feeling as I am now The life of me and my children has proved massively and I'm glad I've found the way out of the hole while I'm only 29 and can still enjoy some of my life, ME hasn't stolen all of my good years. I feel like I've regained the respect of my husband and when you come out of the shadow of this illness and your confidence comes back you realise just how low it makes you sink. I wish the best to anyone who is still struggling and suffering but take heart in the fact that there is a way out, or at least I found one.

11

I got curious about your diet - what kind of things did you leave out and what did you start eating that made you feel so much better - could you describe it in a nutshell?

It's been illuminating to read all the descriptions above. I also feel that there is no other way than trying to keep positive, trying to look for more information and sometimes even slightly overdoing things, to keep up with the rest of the world.

12

Avocado, I got the LDN Medicine commercial names Nodict, Revia and Natrexone QP. But these are all prescribed to addicts. If I can stop taking Venlafaxine 187.5 mg per day. I have side effect of erectile diffusion it spoils my sexual life.

13

Please notice that those are commercial names for naltrexone, NOT for low-dose naltrexone (LDN). In large doses naltrexone is prescribed for addicts, like you say. In CFS doses that are less that 5 mg per day are used (something like 1,5 or 3 or maximum 4,5 mg per day).This is less than one tenth of the dose for normal naltrexone. If you use naltrexone in high doses, it will not help you with CFS.

LDN as such has very little side effects. The most common side effect is sleeping problems, which usually are worst when you start using LDN. LDN does not affect your mood considerably (it is not an antidepressant), so if you think you still need an antidepressant, you should not stop taking Venlafaxine. I am not a doctor, so I don't know much else about Venlafaxine. If you suffer from CFS, LDN is supposed to alliviate your fatigue, possibly also fever and sore throat.

The way to get LDN is from a specialized pharmacy that can prepare small dosages of LDN. I don't know where you live at the moment, but if it's UK, I'm sure there is a way to get LDN through your doctor. If you live in India, I'm not sure at all.

14

Thanks for the detailed information about LDN. Will try to get and use the same for the CFS.

15

I found a Dickson chemist link about ordering Low Dose Naltrexone. In the UK, this is an easy way to get LDN. They also list chronic fatigue syndrome as one of the illnesses for which LDN is used and provide detailed instructions on how to get it and what it costs. As mentioned on the web page, always start with a low doze and use it at least for two weeks. If you start with a too large a dose, you will never get the benefit of this drug.

http://www.dicksonchemist.co.uk/LowDoseNaltrexone/Default.aspx

16

Hi. I read your story and I too am a triathlete. I finished a half ironman last Aug 3 , at that tie I was sick with flue and cough but managed to finish. The payback is now. Its been more than a month since ive been feeling on and off flu like sysmptoms, id rest afew days and exercise in between and seems to get the flu again. Ive read up on CFS and would like to know your thoughts on this. Thank you

17

Hi Ivy,

I was an athlete for 10 years, endurance sports, triathlon, marathon.

I got really sick with a viral like illness Nov2013, never recovered, i can go out walking for 30mins/day but that's it. The best explanation i have seen with what is wrong is in Chinese Medicine where our life-force 'jing' has been used up, it's meant to last us a lifetime. You can replenish it by using particular herbs, diet and resting appropriately. My CFS is a nightmare in all honesty. Let me know how you are getting on. Hope to speak soon.

18

Hi,

I'm with you, same probs, endurance athlete, pretty quick, got viral like illness nov2013, never recovered. I can walk for 30mins most days and that's it. Tank always feels empty. The best explanation i have seen is through chinese medicine, we have used up our kidney jing/life force and we are old before our time. You can replenish jing with appropriate herbs. Let me know how you are doing. Cheers.

19

Hi mate, how's things ? Still struggling myself. Just started on LDN.

 

20

I'm exhausted when i wake up. I walk.

M.E.. and M.S. are different.

I have had M.E. for 31 nearly 32 years am sick of it and completely sick of peoples misunderstanding of the condition. I mean people who are friends and family, sorry to keep going on about it. We were at friends last night 9 of us. 4 days ago I fell and hurt my shoulder badly, did not even get sympathy for that, so many others so much worse off than me (if only they new). I had jokingly said to my husband if I broke a leg they could understand that, but no (I did not do it on purpsoe) it is very painful and very very draining and sit at a table for 4 hours with bright lights last nigth was absolute torture. It has made my pain in shoulder worse as well. It will take at least a week just to get over last night.

What is this diet you are on I am interested. I have a very restricted diet. The fodmap diet and I don't eat meat and am allergic to gluten and occasionalyy dairy products.

This only helps with my I.B.S.

Hope this makes sense I am so exhausted.

Alison