TCP

I have had ME since 1984 and the POTS came on in 2007. I have become very weak and feeble over the past few years and have to do things in short burst and then rest. I lie down to level out my blood and settle my nerves and when I perk up I do a little more and so on.

Yes I have them everyday and not always from exertion. I can do very little and get shaky and breathless. I hate the weakness and nausea with it.

I had a few caeliac tests and I have always shown up negative. I have always had issues with the grains and IBS and decided to go gluten-free and it's helped a lot. No more bloating and pain.

I'm in Warwickshire. Hi!

There are several sites that mention LDN. I tried it for my ME/POTS/AN/PN etc and I couldn't take it in capsule form so opted for the transdermal cream. I was on it for 2 months but stopped as at that time I was feeling so unwell, but it may not have been the LDN as I had started on a beta blocker and duloxetine at the same time and both of these have made me very unwell. It's worth looking into

This is very interesting and thanks for posting it. I'm sure a lot of my friends with ME/CFS will find this interesting reading. I am on a low fat, low carbs, gluten-free diet, basically vegan and currently on a juice diet which is really healthy for me. I'm losing some weight which is great! Good luck!

The consultants put all my symptoms down to ME/CFS and never really bothered to explore them. No GP I have seen really understands and even when I give a fairly brief but info packed explanation of my symptoms, they can't take it all in and smoke comes out of their ears.

I have a welfare tribunal hearing coming up in the UK. I hope to have chance to tell it like it is. The truth and that's all. I wish you well and hope you get a good result.

I don't exercise because it makes my symptoms worse and having ME means I'm exercise intolerant. My HR surges and my breathing and BP go haywire. I feel very sick and weak, so I know my limits. Recovery takes so long that I keep mobile but don't exercise.

Yes, regularly. I had one particularly bad episode where the pain went up my chest into my neck and left arm. The paramedics came and checked me out, all OK. He thought it was an attack of GERD (which I don't have) and perhaps anxiety. It was pretty scary, but now when it happens I just relax and wait for it to pass. Since I've been on a beta-blocker everything has improved in that area.

I take lots of B vits so my pee is always bright yellow. I don't know how much I pee as I don't measure it.

I had ME/CFS from 1984, then the peripheral neuro started in 2007...it progressed to auto neuro and I would say they all go hand-in-hand. The nerves in the torso will affect heart/lungs/bladder/bowel/BP etc. Basically the nerves are inflamed and they control muscles and blood flow in arteries/veins. I get a complicated mix of symptoms and the docs only know a bit about it. I've found out more on the internet and how to treat it. Movement helps with the muscles and circulation and make sure you have magnesium for the spasm. My doctors never diagnosed it, I told them what I had and in the end they agreed with me! Do what you can with diet and supplements etc.

I have that bad and when the neuro really took hold it was dreadful. I keep my nervous system as calm as possible as if I am a little wired my nerves go into overdrive.

I'm sorry to hear this. Yes this will have an effect on your nervous system. I guess keeping as calm as possible and not think too hard. Try some relaxation or meditation. I know it helps me when I'm stressed. I hope it eases for you and you can get through this.

Resting around 80 and standing about 100. I'm on beta-blockers. Without the meds by resting HR was between 95 and 132.

Maia...your story is incredible. I hope you can get it all sorted out and get your life back or as it should be. I hope for this for you. Keep us up to date with your story. I read your symptom list and ticked off all of the symptoms that we share. Almost identical. I have pain around my gallbladder and have a gallstone. I am waiting to get it scanned. When standing: Tachycardia ü shortness of breath ü chest pain and upper back or shoulder pain that travels up the the sides of my neck, jaw and head,makes me clench my teeth sometimes dizziness/swimmy head ü confusion ü cog issues ü greying out tight feeling around chest ü tight feeling around diaphragm ü inability to breathe from diaphragm-hyperventilate ü blood pooling ü weakness ü fatigue ü when laying down: usually no symptoms unless i am really bad. if really bad: ü shortness of breath weakness ü hypersensitivity feel like i want to die-not because i want to but because then i wouldnt feel so bad-i dont really want to die, it just feels like im going to because i feel so bad with no explanation. whole body feels sick, like nausea but no vomiting and not localized to only stomach tachy upon changing position ü shortness of breath on changing position ü general: weakness ü Fatigue ü heat intolerance sweating problems-i usually dont sweat even when i should ü no upper body strength ü cant push/pull/lift with upper body, too weak, exhausts meü stairs kill me-tacky, breathing worse tachy when peeing sometimes-have to check this as bathroom is upstairs-stairs or hydration? blood pressure 90/50 to 120/80 ü resting pulse usually in 60's, lower when very relaxed and sleeping and higher when not well when not well resting pulse in 90's ü sit with feet up or leaning forward slightly to be comfortable breathing and tachy wise ü drive with seat tilted down in back and leaning forward cant do anything with hands over head ü non angina, angina like chest pains ü GI: upper abdominal bloating/fullness after eating ü constipation ü food sensitivities but cant determine to what. Carbs especially and can only eat a couple bites unless i can lay down. ü must lay down after a meal. can not physically stand. sitting difficult. ü cannot tolerate most foods during the day so i dont eat during the day, at night, reclining and laying down, i can eat anorexia-not nervosa type I think i irritated something now because of that as heart beats weird with swallowing ü mostly living off coffee and cigarettes - weight loss Urinary: hypovolemia -not new new-sometimes pee out as much as i take in almost as soon as i take it in new-cant keep hydrated in heat ü Other-all sporadic: sweaty palmsü chillsü cant get warm ü overstimulation ü heat intolerance ü reynauds symtoms feet and hand tingling ü nausea -but not the vomiting kind-an overall all body nauseous and sick feeling ü chemical and drug sensitivities-not sporadic at all but worse when ill or physically stressedü

I don't know anything about the drugs you mentioned, but I have just come off Cymbalta/Duloxetine which is an SNRI. I came off Nortriptyline, the tricyclic antidepressant and decided to go on the Duloxetine, as from what I had read it was good for people with ME/CFS and Fibromyalgia. At first I felt my cognitive functioning was good, but I started to feel very unwell and over a period of 8 months I felt my condition was deteriorating. My GI was in turmoil hours of nausea and I was getting depressed and my cognitive functioning was very poor. My sleep disorders, which had settled became really bad every night. After New Year, I thought I would gradually come off the Cymbalta to see if it was that that was bothering my whole mind and body. The withdrawal was over a six month period and done in very small increments each week. I was then faced with even more sleep problems, diarrhoea and gut clenching; bladder infections, nausea, weakness, worse nerve pain etc. By this time I could barely eat, sleep, move or do anything. I was sweating profusely but my temperature was below normal and my BP very erratic. I was finally able to see my GP and she put me back on Nortriptyline and that night I slept so soundly and no nausea the next day. I am now getting back on track. I'm afraid that Cymbalta/Duloxetine was not for me and the withdrawal over six months nearly killed me. Decisions about meds are major ones and I wish I had stuck with what I had got. It is trial and error and being careful, too. I hope you find something that suits you.

Well done! I hope you continue to feel good. I know many of us would like this sort of diagnosis, but here in the UK ME/CFS/POTS/AN/PN/EDS etc don't seem to get much recognition. Hard to get any help at all really and if you are on a low income, it's even worse.

I seem to have about 5 sleep disorders and presently being tested for all of them. Not sure what the outcome will be!

It sounds good although if it constricts the blood-flow, having neuropathy that would scare me a little because of the thought of the circulation swinging the other way and diminishing. I know I cannot drink anything with caffeine in it, as it upsets my whole nervous system and I cannot wear nail polish with formaldehyde in it because it stings like crazy and damages nerves.

I do get this problem and have done with ME/CFS for years and now it's even worse because of the auto dysfunction getting more pronounced. I do empathise with you on this. I hate walking in crowds and have never enjoyed having too many people around. I've always been a more one-to-one kind of person. If I feel particularly unwell and the anxiety comes on really bad and everything is too much and my reactions and sensitivities are heightened. It's hard to deal with but improved since on the medications and by centering myself and blocking out a lot of the noise and bright lights/colours etc. It took me ages to master this and meditation, affirmations etc have helped. If I am amongst noisy people I only focus on one person who I am conversing with. If at home I go and lie down if it gets too much and outside I calm my nervous system by talking to my inner self. I go into my own little world and it makes it all less full-on. I know this is all part of the condition and not some weird psychiatric condition. Take it one bit at a time and don't think about it too much. I'm seeing my close friend later and at one time it would have sent everything into overdrive, but I'm good, I'm calm and that makes it so much better. Good luck and take care TC

I want a dog, too....so much!

I'm sorry to hear this but family aren't always good when it comes to my health either. I have several complex problems and apart from my mum no one else cares or gives a ****. to be honest. My mum sees my daily issues and how ill I get but everyone else isn't interested...yet I am the one everyone turns to when they have a problem, whether it be big or small. I don't get mad about it anymore. I accept the way that they are and try to educate them when I can. Life's too short to bother with the hassle. When someone says something crass though I do ask them if they would like to swap places with me and then they tend to go quiet! Never feel guilty because they have an issue with your condition. Never!

When the auto dysfunction (AN and PN) started in 2007 I had pain in that area. A scan confirmed a diagnosis of gallstone (although the med student at that time said 'is it a tumour?', rather loudly!). I think it was getting near 2cm in diameter. I recently had a very painful and traumatic withdrawal from Duloxetine/Cymbalta over a six month period and the pain flared up more than usual, as I only usually get it when I have the 'corset hug' around my middle when my bowel is full. Anyway saw the doc and I'm going for a gallbladder/liver scan which is a good idea. Needless to say the pain has subsided since I have been back on the Nortriptyline. It's best to know what's going on though. I believe there is a high incidence of gallstones associated with people with M.E./CFS, Auto Neuropathy and bowel disorders. Good luck and all the best

I sometimes to to do my deep breathing but the restricted feeling in my chest because of nerve damage and its affect on the muscles makes it feel like I am struggling. It has improved since I was put on a beta-blocker, but I do avoid bending forward or reaching up with my arms as this messes everything up. Any light exercise leaves me breathless with my heart pounding. Nothing is as easy as it was. I've never had any oxygen levels checked and have been pretty much abandoned by specialists regarding the POTS/PN/AN etc.