TCP

From what I have read if you have mainly POTS symptoms then exercise can help. It's important that the calf muscles are working well as this is where the blood is pumped back up to the heart and it doesn't pool too much in the lower body. Funnily enough when sitting down and I have my legs elevated I still keep moving my feet and legs. If I have to sit in an upright chair, say when waiting for a hospital appt. I pump the muscles in my lower legs.

I do faint and collapse fully and I've told her this. I'm worried that I'll hurt myself. Even when blood tests come back abnormal and scans and x-rays show strange anomalies, there isn't much reaction. I think we do self-diagnose as we want answers as to what's going on. It's a real struggle but I'm not giving up.

Sitting it's 85-99 and rising can go up to 140+. I think the highest recently was 158. Yes, I agree that lying down calms things down for me.

I tried the 5 minute standing still. I was left with puffy swollen knees with mottled purple-pink flesh. My feet went red and underneath purple-black. They tingled, prickled all over.

Psalm 23 that was a great link and thanks for posting. I may forward that to my link to my doctor.

I don't exercise in the true sense but keep moving around as much as I can. Exercise makes my nerve pain worse and I get breathless and my BP/HR go berserk. The partial collapse of a lung isn't good in my case. I move around to keep the circulation going and it stops me seizing up. Everything is gentle for me. I do use a recumbent bike for very short periods. I would like to build this up. I think having ME, severe neuropathic pain and possibly EDS means I am restricted. I cannot wear compression stockings because of nerve pain in skin.

Thanks everyone. It is frustrating isn't it? I had been having checks for my sleeping issues and went to see a respiratory doctor at the hospital. I also asked about my restricted breathing and he sent me for a spirometry test, x-ray and CT scan. All came back showing changes, decrease in lung volume and partially collapsed lung. I wasn't invited back to the respiratory doctor for results, reasons or treatment. My GP said not a lot could be done. I have since found out it can be a symptom of EDS, which I think I may have going on the signs I have always had. My GP is like most I have seen over the last 20+ years, have been clueless regarding the ME/CFS, severe neuropathy and now POTS/dysautonomia and EDS. I diagnosed myself with ME/CFS and suggested I had it to the doctor and she referred me to a Prof of neurology. It took 8 years to get there. It's 30 years this year since the ME started after EBV=Glandular Fever. I know I won't get referred for the POTS or EDS diagnosis by my GP on the NHS, so I'll have to save to get to a specialist in London. I must say I am looking forward to getting dx after years of misery and seeing what the GP makes of that. It won't be for a while yet but will be worth it! I would like to say 'Thank you!' to this website and forum and to all the contributors, without you many of us would be floundering in another ten years. I've learned so much from all of you. TCP

Does anyone else have issues with their doctor regarding syncope and breathing restrictions? I was recently diagnosed with three areas of one lung showing collapse and also my blackouts have got worse. I wonder if I have to fall, hurt myself and get hospitalised before anyone takes any notice? I thought this 'new' GP was much better than the others I have had but this recent visit has mad me so angry. Has anyone else found it hard to illicit a response from their doctor? Thanks Trish

I think there are 6 types of EDS and you can be mild, moderate or severe. I haven't had a diagnosis of EDS as yet, but I think I may have it although maybe mildly compared to some people. It wouldn't hurt to get checked out. I had knee dislocations from childhood, spine problems and overflexing elbows which were all noted when I was younger. Several rheumatologists and orthopaedics specialists have also noted these areas but never said anything or pursued things.

Mine looks like corned beef! It's worse on thighs, upper arms and breasts. I then get reddening on my torso and chest/neck as day progresses. I'm guessing pooling and the blood vessels expanding with fatigue. I may be wrong. Once when I was able to walk more I went to London and walked a lot when I got home 12hrs later my knee area had swollen up dramatically and there were very blotchy with raised welts. As soon as I lay down they started to disappear. Very odd. No, you're not wrong to be curious and some doctors don't know the answer...well, many don't!

I am pretty much unwell for most of the day and only get about half an hour to do things like wash/bathe and get dressed.

I get bad constipation and this makes my all-body nerve pain worse and bad head and eye pain. When I have gut pain it's usually from wind and having IBS means I had to eliminate foods that created gas and bloating. I love veggies and sadly had to get rid of the sprouts and broccoli. There is a list of 20 foods that can give you gas and pain: sugar, eggs, cabbage, onions, caulifour, garlic, Brussels sprouts, broccoli, spices, dairy, leek, gluten, oats, wheat, alcohol, beans and green pepper. I was recently found to have a problem with the nightshade family of plants: tomato, potato, aubergine and peppers. Since I stopped eating these my gut is a lot happier and no gas, pain or bloating.

I've been on Nortriptyline for a number of years for nerve pain and to help me to sleep. I find it makes me drowsy but that's a small price to pay in many respects for what it helps me with. I had previously used Amitriptyline but that had stronger sedative properties. It won't suit everyone. I think if you have worse symptoms when taking it it may be worth trying something else. For a time I went onto Duloxetine (Cymbalta) and made myself extremely ill. The side-effects of any drugs can often settle down and if they don't then see your physician about coming off it and trying another,

I can either have instant side-effects from drugs or I can suddenly have issues with something I have been taking for weeks, months or years. I don't tolerate a lot of meds and it's all trial and error.

It sounds like you have it sussed. You are doing everything I am doing. Keep going and keep the variety there.

I've had surgery 6 ops since 1985 and one was a hysterectomy when I was 38. Despite the ME I was OK with all except the last one. You have to really make sure the anaesthetist understands your condition and takes measures to limit any problems. When I was first ill with ME I had EBV and surgery. maybe there was a link? I do think I already had the POTS/EDS/ME/CFS/Whatever in me from birth.

I rarely sleep on my right side. I can't really get comfy at all in bed. If I lie on my back I snore like a drain.

I have an Omron arm cuff and it also tells you if your HR is abnormal.

You can get magnesium sprays,I use one.

A wheelchair brings freedom to do more and get out and about. Don't deny yourself that.

I have a push-style wheelchair that was purchased in the early 1990's. I had family push me about it in when they visited me and we wanted to go out. I was at my worst with ME then. After about 1997 my walking improved and didn't use it any more. I am now very unwell with ME/POTS/Autonomic and Peripheral Neuropathy and most likely EDS. I rarely leave the house and use a stick to walk short distances. I would use my chair again if needs be. I cannot propel myself so use the sort with small wheels. I never felt too proud to use it as it was a necessity. As someone who used to worry about what other people thought of me, I have found that being ill and just surviving has changed all of that. Needs must!

I hate the red face thing if I overheat and people think I look well and I feel like I'm going to explode.

I know this feeling only too well and I'm in no way active at all. My torso overheats and my limbs go cold as the circulation closes down in them. I think you need to wear that cooling vest in warmer weather. I used mine last summer and it really helped. I don't know how you can regulate things and all I am taking is a beta blocker for BP and HR issues. I find most of the time lying down is the only way I can get everything to settle down once more.

I have had breathing problems since around 2006 and they have gradually got worse. I found out last week that I have partial collapse in my lungs...so that makes sense. Looks like I won't get any chat with the specialist as he isn't issuing a follow-up appointment which I think is wrong as an explanation would be handy as to the cause and what I should do about it.

Thank you. I have just sent for some salt tablets from the US, the same make, too. Thanks for the advice I will start low with the magnesium. I have been taking some off and on but wondered which one was best to take. Many thanks indeed