TCP

Not sure if I had the same thing, but when the peripheral and autonomic neuropathy got really bad and I couldn't walk, my left foot went very blue like bruising. It eventually went away but the blood vessels in that foot are narrower now and blood flow not so good.

Hi

I started taking Proranolol (beta-blocker) in April for erratic BP, tachycardia, breathlessness, postural problems, extreme flushing of upper body and face etc. The cardio said it was for 'anxiety' and as he said he knew nothing about the nervous system that figures!

Since I have been taking it at 80mgs per day, the flushing has stopped and BP has lowered, but not the heart-rate.

However, I have lost a lot of hair, have even worse nausea and IBS, extremely tired and generally feel yuck! My sleep is more disturbed and I wake up feeling very sick and weak. I have also noted a worsening of the neuropathic pain in my arms and hands.

Has anyone else had these problems and what did they do? I'm lowering the dose very slowly and wonder if there is a better beta-blocker available. I have ME/CFS so I am pretty sensitive to many drugs.

Thank you!

Magnesium deficiency can also cause it.

I never used to have these surges until the neuropathy/POTS started although I suffered from anxiety before that. I don't think the anxiety causes it, I think it's part and parcel of the whole condition.

For me it's nausea as I can't do anything when I have that and it goes on hour after hour. Coming up a very close joint second is the heartbeat irregularity and IBS.

Doctors often label conditions as having a purely psychological basis when they don't understand them or don't know how to treat. It's not that long ago that MS patients and those suffering from Parkinson's had the same level of disbelief thrown at them.

I get it everyday. especially when I'm tired and stressed.

Sounds like a crap doctor. I saw a rubbish one who said he knew nothing about the nervous system....makes you wonder how well they are trained, doesn't it? Can you see someone else for a second opinion?

I always wake up suddenly with a pounding heart, abdominal muscles clenching and sweating. No 100% sure what causes it but it's horrid!

I have ME/CFS, autonomic and peripheral neuropathy. I get nausea every morning for hours on end. It's worse than severe pain. I take peptac peppermint to take the edge off it. I think it's a combination of factors, mainly of the gut and changes in BP. I drink as much fluid as I can and as I put on 5 stones with the meds, I haven't lost any weight and I try and eat even in small amounts.

I hope it eases...mine has got worse since on the beta-blockers.

The answer if always that if they haven't a clue about the cause they blame the patient and see it as purely of the mind.

I take 80mgs of Propranolol

I think spinal/neck problems seem to to linked but as they are part of the nervous system I guess they would have some bearing on symptoms etc. I think if your spine is happy and aligned then sometimes everything else improves like fatigue and digestive disturbances.

Propranolol has made me more tired with the ME/CFS. It helped stop the flushing as I was getting really red-faced and hot. My BP has lowered but my HR is about the same. Not that happy on it, but I've not been offered anything else.

I have CFS/ME and have had it since 1984. Mine started with Epstein Barr/Glandular Fever. I struggled for year to live normally with work and life etc. The fatigue, malaise, IBS, brain fog, hormonal issues etc...this list is endless, have developed and some have come and gone over the years.

I developed peripheral and autonomic neuropathy 5 years ago and have issues with my organs, BP, postural changes etc. Lots of pain and tiredness. The mornings I feel sick and stiff, by mid-PM I am shattered and lie down for a couple of hours deep sleep. The only time I feel OK is when I lie down, but I have sleeping apnea now, sleep disorders like sleep paralysis and night terrors. The anxiety has been really bad, so it's been really important for me to relax and chill as much as possible. When the nervous system is so fragile then meditating and avoiding stress are SO important. I believe if I had been careful earlier on then the nerve damage would not have occurred.

Take it steady and look after yourself!

I'm fine on it...already have fatigue, so haven't noticed much more of an increase.

Eurgh...meds are sure scary. I'm on Propranolol, but haven't got the problems that you have. It did stop the flushing up and feeling like I was going to explode.

PS Having read a lot of the symptoms you are all displaying, I can see many similarities with mine. I put it all down to the changes in nervous and vascular systems. Will effect the whole body.

My neck is bulging and my neck head forward. I have smorle's lumbar nodes and scoliosis. Degeneration of L1-5.

Accepting you have limitations, but able to do some things at times. I look 100% well, but everyone forgets I am ill with ME/CFS, peripheral and autonomic neuropathy etc....I just have to remind people.

Nerve pain as I have it all over my body including my organs

I took acetyl-L carnitine with the alpha lipoic acid and was hopeful of some improvment, but it made me feel very unwell and my urine smelled awful. I have tried several times to take it and each time I felt very sick.

I am on 2,400-3,000mgs per day and I have a lot of nasal stuffiness...never had it before I started the drugs. So yes there could be a connection. I use a nasal rinse when it gets really bad and it helps.

I'm a lot more unstable mood-wise but that may be the drugs I am taking. I'm more snappy and opinionated than I was. My family find me less fun, too. I'm working on it!

May be a mix of both. When your nervous system is implicated then it will respond strongly to anything external happening. If I am stressed or anxious then all my symptoms worsen and as they do it makes me more anxious and body-conscious. Body/mind are so strongly linked. Could you work from home?

You have to think long-term in its use as it takes years...