bertiedog
Senior Member
- Messages
- 1,738
- Location
- South East England, UK
Sorry for such a long post but I wanted to vent about this shit illness. Even though I am now moderately affected compared with many here on PR, the unpredictability of it can still be so life altering.
Only yesterday I was delighted to think how much I had improved over the years. I was diagnosed in 2000 with ME/CFs when I could barely walk at times due to severe exhaustion, dizziness and pain and I had to give up my part time teaching. You could say that was when my "journey" began especially after my GP told me there were 3 things he could offer me - yoga, Tai Chi or Meditation. Once he told me this I knew I was on my own and that I would have to find out stuff for myself. It was so insulting and quite upsetting to be told this when I could barely get off the sofa because of such severe dizziness and what I know now was POTS.
After a couple of years I saw a private Endocrinologist who after tests said I needed a steroid and also dessicated thyroid because my hormones were rock bottom and would explain a lot of my symptoms. These did at least give me my life back but didn't control the POTS or help my immune system which was rubbish because I picked up every virus or infection that was going.
Over the years I have had positive tests for practically all the Herpes type viruses and others, borrelia plus I was allergic to mercury and nickel and had too high levels in my blood and hair. The first major thing I did in 2002 was to have all 13 amalgams safely removed (or fairly safely) and chelated as per Cutler for a couple of years though it did take 5 years for my levels to go back to normal.
Over the past 2 1/2 years I have done 18 months of the Cowden Protocol plus some Buhner herbs and I do think these have helped my immune system a lot, it does seem stronger now and I get over things a lot quicker. I know I have improved because for 2 1/4 years I have been wearing a Garmin Viofit wristband and when I first started I was only doing around 5000 steps daily or less. (This was when I started on the Cowdon and other herbals.)
Now over the past year I average 8550 steps a day and on the occasional day can get up to 10,000 steps as I did one day this week without ill effects apart from getting a migraine type head the next day
As my energy has been really good this week, in fact the best Christmas period I can remember, yesterday afternoon I thought I would attempt one of the walks I used to do regularly before being diagnosed in 2000. I have terrible memories of this place because as I got sicker and didn't know what was happening to me often after only about 10 or 15 minutes of walking my dog there, my balance would just go with no warning and I would be so dizzy I somehow had to get to where there was a seat although my heart used to race so much I didn't know what to do. My legs would go like lead and I would be staggering like a drunk and sometimes I don't know how I got back to my car. I still remember the tears I would shed because the experience had shaken me up so much.
So you can imagine my delight yesterday when I walk along the coastal headland where I have these terrible memories and can enjoy the walk although I was aware of slight increased heart rate after 15 minutes when I am right at the tip of this headland where the memory of me nearly falling over so often came to me. I gave myself I good talking to and walked back up to what is called The Gallops and where there are some benches and felt reassured and did sit for about 3 minutes to give my legs a short rest. I then felt fine and walked back downhill to where my car was and to where the entrance to the beach is.
This is where I realise it goes wrong. Because I had walked so well for practically 30 minutes which is pretty regular these days, I wasn't satisfied so wanted to push on and go down to the beach because my Beagle loves it there and so do I walking next to the sea. (Actually I realise I was testing myself). My legs did start to get rather heavy and I could start to feel my back aching a big so tried to find a rock to sit on but unfortunately they were all wet as the tide was just going out. All in all it was 45 minutes but I did have a sit down before walking back up the slope to the car.
There weren't any real obvious ill effects apart from my legs feeling rather heavy and I did feel elated to think how far I have come over the years. I did my usual 25 minutes of breathing my oxygen concentrator when home and everything felt fine, I remained very happy.
However, the first sign of anything wrong was about 4 hours later when my gut started bloating and hurting then around 10 pm when a strong migraine type headache started out of nowhere and I realised I needed a painkiller. About 40 minutes later suddenly the right side of my neck just seemed to pull causing huge pain, I could hardly turn my head. I soon went to bed not feeling good at all and slept quite quickly till around 3.30 am when I woke up feeling just awful. I could not get back to sleep and after an hour or so it was obvious I had a foul migraine developing and didn't manage to get back to sleep till around 5.40 when I did sleep only for it to be some sort of a nightmare.
I had to get up around 7.30 feeling like a zombie because the dog walker was arriving. It felt like I had some sort of virus, My gut was still rumbling and rolling with bloating and I had nil energy plus the migraine head. As the day has gone on I have been so cold which is unusual and still have had pain despite strong painkillers and now I have a very sore throat. All these symptoms are similar to what I now recognise as PEM but don't get them so often. For all the world I would say I have got a virus but often this only lasts 2 days provided I rest and then all the symptoms disappear. and my energy will come back. The key thing is that these days its always the same. Gut starts off feeling like I cannot digest my food and then later my throat gets red and sore and I develop a migraine with nil energy. My legs also feel very heavy and I do look like crap.
So all in all it definitely wasn't worth testing myself to see how much walking I could do, I should have just been satisfied with my normal 30 minutes including a short sit down. I do realise I am very fortunate to be able to do what I do and will again work on acceptance.
Finally I would like to say that I do hope that next year the lovely knowledgeable people here on PR get all the help they need to improve how they feel. There does seem to be progress being made at last.
Pam
Only yesterday I was delighted to think how much I had improved over the years. I was diagnosed in 2000 with ME/CFs when I could barely walk at times due to severe exhaustion, dizziness and pain and I had to give up my part time teaching. You could say that was when my "journey" began especially after my GP told me there were 3 things he could offer me - yoga, Tai Chi or Meditation. Once he told me this I knew I was on my own and that I would have to find out stuff for myself. It was so insulting and quite upsetting to be told this when I could barely get off the sofa because of such severe dizziness and what I know now was POTS.
After a couple of years I saw a private Endocrinologist who after tests said I needed a steroid and also dessicated thyroid because my hormones were rock bottom and would explain a lot of my symptoms. These did at least give me my life back but didn't control the POTS or help my immune system which was rubbish because I picked up every virus or infection that was going.
Over the years I have had positive tests for practically all the Herpes type viruses and others, borrelia plus I was allergic to mercury and nickel and had too high levels in my blood and hair. The first major thing I did in 2002 was to have all 13 amalgams safely removed (or fairly safely) and chelated as per Cutler for a couple of years though it did take 5 years for my levels to go back to normal.
Over the past 2 1/2 years I have done 18 months of the Cowden Protocol plus some Buhner herbs and I do think these have helped my immune system a lot, it does seem stronger now and I get over things a lot quicker. I know I have improved because for 2 1/4 years I have been wearing a Garmin Viofit wristband and when I first started I was only doing around 5000 steps daily or less. (This was when I started on the Cowdon and other herbals.)
Now over the past year I average 8550 steps a day and on the occasional day can get up to 10,000 steps as I did one day this week without ill effects apart from getting a migraine type head the next day
As my energy has been really good this week, in fact the best Christmas period I can remember, yesterday afternoon I thought I would attempt one of the walks I used to do regularly before being diagnosed in 2000. I have terrible memories of this place because as I got sicker and didn't know what was happening to me often after only about 10 or 15 minutes of walking my dog there, my balance would just go with no warning and I would be so dizzy I somehow had to get to where there was a seat although my heart used to race so much I didn't know what to do. My legs would go like lead and I would be staggering like a drunk and sometimes I don't know how I got back to my car. I still remember the tears I would shed because the experience had shaken me up so much.
So you can imagine my delight yesterday when I walk along the coastal headland where I have these terrible memories and can enjoy the walk although I was aware of slight increased heart rate after 15 minutes when I am right at the tip of this headland where the memory of me nearly falling over so often came to me. I gave myself I good talking to and walked back up to what is called The Gallops and where there are some benches and felt reassured and did sit for about 3 minutes to give my legs a short rest. I then felt fine and walked back downhill to where my car was and to where the entrance to the beach is.
This is where I realise it goes wrong. Because I had walked so well for practically 30 minutes which is pretty regular these days, I wasn't satisfied so wanted to push on and go down to the beach because my Beagle loves it there and so do I walking next to the sea. (Actually I realise I was testing myself). My legs did start to get rather heavy and I could start to feel my back aching a big so tried to find a rock to sit on but unfortunately they were all wet as the tide was just going out. All in all it was 45 minutes but I did have a sit down before walking back up the slope to the car.
There weren't any real obvious ill effects apart from my legs feeling rather heavy and I did feel elated to think how far I have come over the years. I did my usual 25 minutes of breathing my oxygen concentrator when home and everything felt fine, I remained very happy.
However, the first sign of anything wrong was about 4 hours later when my gut started bloating and hurting then around 10 pm when a strong migraine type headache started out of nowhere and I realised I needed a painkiller. About 40 minutes later suddenly the right side of my neck just seemed to pull causing huge pain, I could hardly turn my head. I soon went to bed not feeling good at all and slept quite quickly till around 3.30 am when I woke up feeling just awful. I could not get back to sleep and after an hour or so it was obvious I had a foul migraine developing and didn't manage to get back to sleep till around 5.40 when I did sleep only for it to be some sort of a nightmare.
I had to get up around 7.30 feeling like a zombie because the dog walker was arriving. It felt like I had some sort of virus, My gut was still rumbling and rolling with bloating and I had nil energy plus the migraine head. As the day has gone on I have been so cold which is unusual and still have had pain despite strong painkillers and now I have a very sore throat. All these symptoms are similar to what I now recognise as PEM but don't get them so often. For all the world I would say I have got a virus but often this only lasts 2 days provided I rest and then all the symptoms disappear. and my energy will come back. The key thing is that these days its always the same. Gut starts off feeling like I cannot digest my food and then later my throat gets red and sore and I develop a migraine with nil energy. My legs also feel very heavy and I do look like crap.
So all in all it definitely wasn't worth testing myself to see how much walking I could do, I should have just been satisfied with my normal 30 minutes including a short sit down. I do realise I am very fortunate to be able to do what I do and will again work on acceptance.
Finally I would like to say that I do hope that next year the lovely knowledgeable people here on PR get all the help they need to improve how they feel. There does seem to be progress being made at last.
Pam