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I have ANXIETY stamped across my medical notes. When a doctor doesn't understand or know what to do it's the word to use. Like I have ME but in the UK the government have listened to psychiatrists and psychologists who have claimed ME as their own and now label it a personality disorder: anxiety avoidant personality disorder, despite all the proof of it being a physical illness.Now if you are chronically ill with a condition effecting the nervous system there will be a certain amount of anxiety but this comes from having a very sensitive nervous system and for sufferers fighting for recognition and treatment when they feel very unwell. Doing therapies does help calm the system but it isn't a cure or treatment for the underlying problem.

I use Peptac Pepermint Liquid. It's the only thing that stops the acid for me.

Dame Maggie Smith the actress has Graves. I hope you do well and it improves

I don't know for sure about the antibody results but I know for one all of my health problems started with the Epstein Barr Virus. I have no doubt that was the trigger with me and many other people whether it led to ME or POTS/Auto Dys.

Well since my last post I have been told that the results of my CT scan show atelectasis (collapsed lung) in lower right and middle lobes and the lingular segment. So that's why my breathing is restricted. Now this can be a result of the neuromuscular problems with the nerve damage or caused by abdominal surgery of which I have had 5 since 1984. I have heard of people with ME getting collapsed lungs. This makes sense now. Looking back I noticed I was getting breathless from 2005-6 when the nerve problems started to kick in and I had surgery that same year. So yes, I was surprised but at least I have proof that something was going on and it wasn't all in my mind.

I had guinea pigs from 1987-1999 and they were house pets. I loved having them around and looking after them. I didn't have a dog or cat as I was in flats from 1987-1997 and they were prohibited. I am now in a house and would love a small/medium dog, but cannot take it for walks because my walking isn't very good. I see so many rescue dogs and would love to be able to look after one. They do make a difference.

In the UK we are often prescribed the generic forms of Gabapentin, as they are cheaper. Lyrics is still under license so costs more and it second choice.

It amazes me how my BP can be say, 104/57 when I am sitting down and my heart rate is 95 and then after standing for a while it can shoot up to 178/85 and my heart rate is 138. Very dramatic and certainly shows how these changes can effect the body.

I am on the Tricyclic Abtidepressant Nortriptyline, similar to Amitriptyline but less sedative. It does give you brain-fog and many other side-effects and to be honest I think most do to higher or lesser degrees. I take mine for pain and so I can sleep. Having said that I am trying to wean myself of it very gradually. I was on Duloxetine (Cymbalta) SNRI for a year and was very ill and had to come off it and for that reason I wouldn't try another. All of my neuropathy and autonomic problems worsened. My friend in NI (who has POTS/ME) has been on Sertraline for many years (SSRI) and seems to be OK on it although he has had a very tough time over the years he seems to have levelled out and become more stable regarding his symptoms. I don't know anyone who doesn't get memory loss, fatigue, low mood and other issues even ones taking it for depression and don't have POTS. Three of my female relatives are on Citalopram (SSRI) at the moment because of menopause/depression, Hashimoto's and hormonal problems. All seem to be OK with it and coping well with life in general. As with all meds it is trial and error as what suits one person may not suit another. I hope you find one that really suits you.

Thanks for your input. I also juice and have a mainly veg diet, although because of IBS issues and surgery on my bowel, I have some restrictions on eating some foods. Sometimes my appetite and thirst can be very poor and so I think for me supplementation is vital. I don't always think the meds I take help as my digestion can be poor at times, but I hope vits and mins can offset any problems. I do have problems with drinking enough. I have been adding salt to food but don't tolerate it that well and I've been trying to source decent tablets. I'm not prescribed Midodrine or Florinef, so I'm hoping taking the supplements will help. I also take a magnesium supplement and there is much debate whether to take a citrate, malate or oxide and what dosage is best. I use a magnesium mineral oil spray on the soles of my feet and on cramping muscles and occasionally have Epsom Salt baths. I hope you can get all you need from your diet. I have tried as I can and would rather go down the more natural supplement route than the drug one.

According to the chart I should have been in a coma!

I will not be able to get any guidance from my GP about the following supplements but it would be interesting to know what form and quantity people take the following: Liquorice root Magnesium Salt What form/type, quantity etc. I am looking to source these on the internet and want to buy in the UK. Many thanks

Whilst in hospital I was 65/32 at my lowest for four days of low BP and no one batted an eyelid. The doctor on the neuro ward said later that they only get worried if it goes below 99 systolic and I told him how low mine went and I was giddy, barely able to stand let alone walk. He looked at my previous chart readings from when I was in obs and was shocked how low they had gone.

Excellent news. I use magnesium mainly for pain and muscle cramps. I know women tend to need more with menstrual cramping, too. I think many of us are deficient in this mineral and it's well worth taking. I use the magnesium mineral oil directly on pain and that helps a lot.

Hormonal changes effect the nervous system and immune system. I always had bad periods and my symptoms worsened over the years but I was able to pin-point my worst days and link it to my menstrual cycle. My BP/HR would be erratic, I would feel extra weak and 'fluey-headed. More nausea and dizziness. IBS much worse. In latter years I noticed the neuropathic pain worst around these times although cyclic without periods and the pain doctor mentioned if I was on HRT, to which I said yes and he also alluded to the pro-oestrogenic effect. One GP wanted me to stop the oestrogen patches, although I had had a full hysterectomy and I explained that over a four month time-scale I had tried to come off them only to find that my pain worsened and she poo-pooed this and said I had to come off them. I told her about the HRT helping with the pain and what the pain consultant had said and she wasn't having any of it. Luckily I saw better GP's afterwards who understood.

Thanks everyone. I still feel pretty rough although it is settling down once more. Yes at least I tried it and it was a risk as I am so sensitive to drugs. I'll stick with more natural approaches as it's gentler on the system!

Update: The day of the infusion as the day progressed I began to get a really bad headache and then sore muscles all over my body. Really sore like I'd overused them all along with 'flu. Anyway I had very uncomfortable sleep because of the pain. The pain lasted for three days and nights. I felt pretty grim. Then the sore muscles abated and it was followed by intense prickling all over. This lasted for two days intensely. Then I awoke and my thigh muscles were really sore mainly at the front. Unbelievable I could hardly walk and this lasted a couple of days. Needless to say, I cancelled the 2nd infusion as I was in too much pain. During all of this time I was treated to very severe night sweats leaving me drenched each night and morning. It's now over a week and I can honestly say that having that infusion was not good for me. My whole body reacted badly to it. It does work for some people with pain, but wasn't for me.

Lyrica wasn't strong enough for me and went on Gabapentin. It works for some people though.

Yes the condition and the meds can cause nausea. I've found it happen with mine. An additional thought is maybe the salt tablets could have an emetic action? Just a thought. I also take my supps with plenty of water or food even better.

Why have you come off it? Once it does it's job the symptoms abate and your allergies may improve.

When first on probiotics it can make you feel ill as the yeasts and bad bacteria die off in your gut. After a while it eases and you brighten up. It took me a couple of weeks to improve.

Blimey!

Was it spirometry test? I had that done and nearly collapsed doing it as the more I did it the more breathless I got. It was eventually halted and I took some time to recover.

I believe that if you eat well and look after yourself then you could live to a good age. I think you would have to have very severe autonomic dysfunction for it to end your life prematurely. I should imagine it is the same for the severely effected ME sufferers as if it is severe then your whole body suffers and eventually cannot take it. I have had ME for exactly 30 years and autonomic dysfunction has always been part of it. I am now 53.

Mine is definitely from the nerve damage. My lung volume is down and breathing restricted, no asthma.