ME (chronic fatgue syndrome) does anyone have this Page 1 / 2

vonnienz1, Jan 21, 2:36pm
I have had CFS for over 10 years and found the only thing to help me is Goji juice an antioxidant. stopped taking it when we moved 2 years ago but want to get back on it. looking for a distributor in Tauranga.

zsazsa777, Jan 21, 11:13pm
Hi tiki-turtle How are you both going? I hope you have found something that is working for your husband. I hope you you have a good 2018. Best wishes

seashore, Jan 22, 12:15pm
Hi Tiki Turtle, my husband had very similar symptoms to yours, started after a bout of flu. luckily he had a doctor who was taking an interest in what was then called the Tapanui Flu. Talking about 35 years ago. It lasted about 2 years. He also had the exhaustion and in particular, your comment about having trouble walking to the mail box rung a bell with me. A friend,s daughter became ill like that in her last year or two at university. She came home to live, and to sleep!. She has improved considerably but is not healed or cured. But has been holding down a job recently.
I would definately pay attention to any nutritional advice. I also believe your husband should do his best to live with his symptoms, sleep whever he needs to, for example. Without feeling frustrated or guilty. This is not his fault.
I,m very glad you can support each other. people with this sort of condition can and do improve. Look after each other. You may need to consider supports like home help. Tasks like shopping for fresh groceries can be difficult.
I dont see any reason why you shouldnt google for information, as long as you are sensible about what you read!. Not everything you read will necessarily be true. Nor is self diagnosis using the net a wise move. But
it can be helpful and it can be discussed with your GP.

axelvonduisberg, Jan 22, 2:20pm
the only advice i can give about Ricky Gorringe is AVOID HIM LIKE THE PLAGUE.

turvy, Jan 23, 5:24pm
No wonder he has ME , after going through those stressful illnesses.
Sounds like he might need to try to stop being so hard on himself, accept what has happened and REST>
He has been to hell and back.
Chronic fatigue always hits people after major stress or illnesses, and for some it can take years to heal. I had Glandualar Fever when I was 15, (am now 60) and was told in those days that if I got through to 21 without a relapse, I would be fine, but new research says the glandular fever stays in the body for life, so it will always flare up after illnesses for stress.
The most important thing is to listen to your body, which is the hardest thing for humans to do.

alfa13, Jan 24, 6:33pm
Sister had it for 10 years was frightening, she had tremors too was hideous watching her waste away bedridden and not be able to help or no what was wrong for a long time. Long long road of doctors specialists, counselling, sleeping and going to live back home and with me, she is a different person now married with children enjoying life . there is hope x

tiki-turtle, Nov 13, 9:38pm
myalgic encephalomyelitis. Its been about 10 months now they cant find anything wrong with my husband, he has had scans, bloods, xrays. He has lost nearly 20 kgs - he is 5 foot 11 and weighs about 58 kgs. He can hardly walk, he walks to the loo and back and he is exhausted. He has no strength in his body, he is cold all the time, then hot (cant control his temp) and has an essential tremor. He has a shave and he needs to have a sleep. He can only stay awake for a couple of hours at a time. Then sleeps for a couple of hours. Flu like symptoms, headaches, cant remember alot of stuff, dizzy, has bowel problems, chest pain, back pain and a pile of other things. Just in the last few days he has got worse, spends most of the day sleeping, only gets up to the loo. I know your not suppose to google stuff but when 3 lots of specialists and gps think your talking through a hole in your head, and you can see your husband fading away before your eyes, i found this ME, i think he has this but no-one else seems to.

zsazsa777, Nov 13, 11:16pm
I suggest you contact The Associated NZ ME Society - or try and see Dr Ros Vallings, the NZ Dr who specialises in ME. My husband has had ME for 25 years and started in a similar fashion to your husband. We have been lucky and manage his condition reasonably well, with some set backs from time to time. For us it was a matter of having allergy tests and removing these foods from his diet. Everyone is different and many have had success with different solutions. Hang in there and please contact ANZME to get some support from people who have been through this.

zsazsa777, Nov 13, 11:17pm is Dr Ros Vallings website.

tiki-turtle, Nov 13, 11:30pm
oh my gosh thanks so much - i will do that xo

sunnysue1, Nov 13, 11:41pm
Dr Ricky Gorringe treated my daughter. he is no longer a GP but may be practising as an alternative. She was bedridden at 13 but with his help got well. Is now in her 30s and no signs at all but does dose up on Immunofort whenever she gets slightly under the weather. I think she was lucky in being young at the time but my goodness it was scary

tiki-turtle, Nov 14, 12:08am
cool - thanks for that. I'm scared out of my wits, hubby is so over it. They are going to do a colonoscopy (its the last thing we will let them do as he cant take any more) but they have to admit him to do it as last time he took the bowel prep he got a chest infection cause his small body couldn't handle the amount of fluid he had to drink, he vomited and aspirated and i had to call the ambulance

kacy5, Nov 14, 11:07am
My sister has lived with this all her adult life, 64 now, sometimes worse periods than others and it's awful, such a waste of a life sleeping it away. A year or two ago she underwent a process called (I think) the Lightning Process, I can find out if I'm wrong but it was magic for her. I couldn't understand it but, despite the odd relapse which she was told would happen, it has given her a life she can enjoy with a new grandson. She still has to rest heaps but can talk on the phone without getting exhausted, go to the pool and out for coffees etc. The worst thing you can do is, on a bad day, push yourself.

I often wondered what she was talking about with the exhaustion---until it hit me but it was diagnosed as a post viral syndrome as an almost gone kidney infection showed up in a blood test. Another one a week later was clear so at least, luckily, it showed why I was feeling so bad. It took me two years to recover completely and all I could do was obey my body, when it screamed 'sleep' I had to do it. I had to leave a part time job, too tired to work but slowly I found myself doing more and one day realised I felt 'normal' and hadn't slept. It has left me with a fear of getting tired despite it being 20 years ago and I now pace myself doing tasks, shifting recently with a short settlement date was a killer but I managed.

Has your husband had glandular fever as it seems to hit those who have the worst. My sister had GF at 13 but I never have so perhaps that is why she was so bad---she is a tiny person too, I'm not. All the best to your husband but don't let him do too much, it will make him worse. Thinking you are unfit and trying to get fit is a big NO until his body lets him. Some Drs think it is all in your head but the links above will be helpful to you both.

tiki-turtle, Nov 14, 12:55pm
oh wow that sounds interesting - another one for the list - thanks! No he didn't he had pancreatitis, had biopsy's etc cause most of the men in his family passed away from pancreatic cancer - so we had some tests done, and it showed a bulky pancreas and pancreatitis, which has mostly resolved now but he is left with this exhaustion. I get him cause i had my kidney and a few bits out due to cancer and it took a couple of years to recover energy wise. today is the best day in weeks, he has had a shower on his own, and walked the driveway to bring in the green wheely bin, but is getting tired now.

kacy5, Nov 14, 5:45pm
Pancreatitis, very painful I have heard, a cousin had it and he said it was the worst pain he had ever endured. I'm glad today was a better day, perhaps he has reached the peak and now on the road to recovery but it won't happen overnight. I'm no medical expert by any means, just going by my experience and he could recover, hopefully, quickly. As long as he doesn't force himself, little things when able and sleep when it's needed. No jogging around the block, time for that in the future, as he has been very ill. There is, (as far as I know) nothing to take to aid recovery but make sure he eats healthily and when having a bad day he rests even if it means breaking invites or leaving an event early. People don't understand the exhaustion unless they have had it, I didn't and it is not just 'being tired' it is every part of your body screaming to lie down. My sister told me of a friend of hers who had ME and she was on her bed when the weather changed. She was too exhausted to get up and shut the window and had rain coming in on her until someone came into her room. She had ME really severely, much worse than my sister she said but she did make a complete recovery as did another person I knew some years ago. Hoping for more better days for you both, it sounds as if you haven't had the easiest of times either. Are you well now?

tiki-turtle, Nov 14, 6:47pm
yes he was in and out of hospital for quite a while, on a high dose of morphine. because of the amount of weight he has lost they don't want him a 'healthy' diet as such. low fat for the pancreas, but good fats, avocado etc for the weight he needs to put on and a bit more salt than normal (chips and peanuts) for the low bp. Ive read a little about it and wondering do they have good days? and then it comes back? this is the first day in weeks he hasn't gone to bed - resting on the couch after his outing to the letterbox, to get the bin in. I got a egg carton looking memory foam for the bed as he has lost all his bottom fat, and finds it very sore to sit. Ive emailed our gp again with my thoughts, and the fact that he is getting worse, no reply yet. not surprising, we see the original surgeon soon for the colonoscopy he might think im nuts too haha.

tiki-turtle, Nov 14, 6:51pm
I will be cancer free 5 years next feb. but my remaining kidney has kidney disease and i have a type (cusion - dont know how else to explain it) of blood cancer. Im ok most days, i get 'normal tired' the chemo (pills) which most people say isnt real chemo haha make me tired and alot of bone pain. ive seen 50 yr olds with more energy but then im missing a few major bits so. we keep each other going :-)

scottycat, Nov 14, 8:26pm
I was diagnosed with ME back in the late 1980's early 1990's. I didn't believe it to start with and did my own research. I discovered a wonderful book called 'Living With ME' written by a General Practitioner in the UK who had it. It was an eye-opener for me. I took Magnesium and Zinc, Floradix (liquid iron supplement) and Berocca. I doubled the recommended dose of Floradix. When I felt like lying down I did. I had very early nights and listened to my body. It was the opposite or the Kiwi - shouldering on. I beat it but have had a few relapses after surgery but generally am out the other end of the tunnel. Good luck - hope your husband gets better.

kiwitrader43, Nov 14, 8:35pm
Research NZ trace element deficiencies/volcanic soils.
Give him a couple of large aspirin to thin his blood and see if there is any difference.
Arrange a liver flush and keep him away from any caffeine sources.
2 brazil nuts p/day for selenium.
Pumpkin seeds for a good mineral spread.
Beetroot also.
Raisins for potassium.
Small tins of mackerel and also tins of oysters for zinc.
A teaspoon p/day of blackstrap molasses.

Sounds llike he has depleted his trace element levels to the stage of hobbling about the house and being unable to descend stairs properly.

Google cold body trace element defficieny. Educate yourself and fix him. up

kiwitrader43, Nov 14, 8:40pm
Is your husband stuck at home on the computer, or still working?

tiki-turtle, Nov 14, 9:41pm
Thanks for that - will check out those supplements - glad your better :-)

tiki-turtle, Nov 14, 9:44pm
Thanks will check that out. He is at home - not interested in the computer - no energy - although he did check his emails today. I have been looking some stuff up but now have some better ideas about diet.

zsazsa777, Nov 15, 12:11am
You might find it helpful to keep a Food Diary. Write down everything consumed and note all symptoms that day. Over time this may reveal trigger foods that can be eliminated. My husband has been doing this for 25 years and it is a good record and very helpful when consulting medical professionals.

tiki-turtle, Nov 15, 12:57pm
I will do that - thanks so much!

kacy5, Nov 15, 3:07pm
My sister tried all diets and was given Vit. B12 injections which did help but only in the short term.

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