Mikey69

Hi p8d, Kateybug, Statesof, Angelloz, It is a great pleasure to meet you all. Please forgive my composing a 'joint' message to you all. I hope you are ok with this? It's just easier at the moment, as i am having a bad day (again) ****! this is annoying! lol! I am very sorry to know that you have all gone/are going through this - it feels like **** on Earth at the moment! I have nothing but repect for you all for continuing to fight the battles against your bodies. Your inner strengths are a credit to you all. I am also moved that you have found the strength to take the time to reply to me. I am truly grateful to you all. So thank you :-) When i was in my early 20's and first got CFS i literally couldn't walk for 2 years. I was told i would probably never walk again - i proved everyone wrong. it was a long battle, but i won. And i've achieved so much since those dark days. i never thought i would have to go through such dark times again. I'm sure the sleep dep is affecting my judgement a little, but i can honestly say that this is harder to deal with than re-learning to walk. At least i had some control over that. I'm on day 31 with hardly any sleep and am continuing to ram nutrients down in order to slow/stop the weird unexplained and unwanted weight loss. I'm pleased to say that i'm pretty relaxed about it all now. i was fraught on day 4 with no sleep, but i have come to realize that i just have to accept it and hope that it sorts itself out with good sleep hygeine, etc. Although i must admit that i find the weight loss thing quite scary at the moment. I have a very good cyclists physique that has taken me years to develop and i don't want to lose it. (Bumpy legs of steell! haha!) i presume others have found that the insomnia and weight loss occur at the same time? i don't have IBS-D symptoms at moment, so i'm struggling to wrap my poor tired brain around what the **** my body is doing with the 3,700+ daily calories i am consuming to try to slow weight loss? I should be piling the weight on, especially given that i am now struggling to be physically active. Does anyone know? Also, can anyone tell me what triggers the insomnia? Or is this another medical mystery? it seems odd that the insomnia, weakness and weight loss all started during the same week. Just what the **** is my craaaazy body trying to do to itself now? it's so **** naughty! I will regain control dammmit! haha! I'm guessing there is no time scale for this thing? So, in theory it could be days, weeks, months, perhaps even years?, etc. I've been researching sleep/insomnia lots and i understand that insomnia can resolve within 6 - 8 weeks with good sleep hygiene - is that what you all have found? I'm not on any meds at mo because sleeping tabs didn't help too much, but the side effects were horrific - so too many costs for too little benefit. I am taking Ataraz 20mg at night, which can help, but again, not as beneficial as i would have liked. I think i need elephant tranquilizers! haha! I'm also trying valerian, hops, passionflower to aid sleep - not sure it works though. Can anyone tell me what they do to aid sleep. Any advice would be most appreciated. Thanks again, Mike

Hi all, i'm Mike. I'm new to this forum. I hope you are all as well as you can be :-) I hope you don't all mind but i am looking for advice, and i guess some reassurance? I am a 45 year old male. i've had severe Fibromyalgia since childhood and severe CFS/ME since my early 20's. I've always tried to get on with my life and made the most of it, without worrying too much about my health. I recently self-diagnosed Dysautonomia, based off my symptoms, lots of internet research and a recent visit to a specialist neurological centre. 18 months ago i started to get new symptoms, which weren't typical for me FMS/CFS. Crazy changes in consciousness, like i'd taken recreational drugs and got a bad hit? (I've never done this so don't really know), vertigo type symptoms, but not vertigo, the worst IBS-D i have ever experienced, unbelievable pain, diarrhea (5-6 times daily), wind, etc. This started mildly and infrequently, but became daily. About 6 months ago i started getting what seemed like hypoglyceamic crashes: sudden weakness, diziness, light headed, shaky, confused, overheating/sweaty, etc. I am now having to eat 6 meals per day. i can't go more than 3 hours without eating. This is weird as i have been able to miss the occasional meal in the past with no problems. This problem has settled by eating more frequently, but it still happens if i am late with a meal. Also, my heart control became more erratic over past 18 months. I'm used to palpitations with CFS/FMS, but this is different. There are times my heart is overworking, pumping too hard and quicker - even at rest. Moving around home can cause severe palpitations. it's as if there are 3 controls for my heart which someone is playing with - loudness, speed, power. This has stopped me sleeping at night recentl, as my heart is beating too loud/fast. I sleep as soon as my heart quietens (usually 5am). i have most of the other symptoms associated with Dysautonomia. At beginning June this year four things happened at the same time: My IBS suddenly settled down within 4 days. i did start drinking milk kefir, and this is the only explanation i can think of to explain sudden change. My bowel habits are normal for 1st time in a decade! (sorry). Also, much of typical CFS/FMS pains suddenly subsided a lot - again, it's been a long time! So some real positivies here. I suddenly developed severe insomnia, which i am still struggling with. i am getting between 1.5 hrs. - 6hrs. sleep per night. I'm doing all i can to help myself, but i'm still not sleeping well. obviously this ismaking my CFS/FMS/Dysautonomia symptoms worse - i'm stuck in a vicious cycle i can't break. Sudden unexplained rapid weight loss began at same time. I've always struggled to keep to a healthy weight. Finding it easier to gain than lose. Weight loss is really shocking. I've been losing 2lbs overnight at times. I'm currently seriously over eating to try to maintain my weight, 3200 - 3600 cals daily. I usually maintain on 2600 cals daily. Once my IBS settled i was left with pround muscle eakness and little stamina in arms and thighs. legs feel as though i've worked out at gym and then ran down a long flight of stairs - weakened, shaky, achy, etc. it's like i've overworked muscles, even though i haven't. This has improved in past month, but i'm still not good. I should perhaps point out that before all this began i could exercise daily if i was careful. Cycling at home/fast walking on good days. Now i'm struggling to walk most days. i'm not on any meds, because nothing helps, so no point, I use mediation/relaxation, breathing techniques, CBT, etc. Sorry for the long post - i wanted to be sure i got it all in, For the first time in my life i have been (and i guess still am a little) scared and unsettled by what is happening to me. This alone is alien to me, as i have always just dealt with it. i've had test after test, and all have come back fine. Thyroid, kidney, liver, bloods, endoscopy, barium swallow, cardiac/lung tests, etc. I'm bacially very healthy for my age according to all tests, but i'm really a mess! Both me and partner were concerned something serious had been missed like cancer or something. The whole 'what if' i guess? It got so bad i'm even sorting out my will, just in case. What i want to ask is does this happen to others? i have just started researching Dysautonomia and i have found occasional references to insomnia and unexplained weight loss/gain. i would appreciate any feedback anyone could provide. Confirmation that this can happen would be reassuring and any tips to help me overcome these difficulties would be most appreciated, Thanks in advance, Mike