i have had times of waking feeling ok but not being able to do anything......so i can relate......afternoons ahve always been worst time for me though .
Is ME due to Ehlers-Danlos Syndrome "stretchy veins"
- Thread starter Allyson
- Start date
HI ukxmrv,
no, not at all. thanks very much for the interest.
not relieved by rest.... well i do not feel better after i lie down for a few hours, it takes a few whole days in bed for me to feel better; as to the misdiagnosis, i think it unlikely; I have 2 RSI's, migratory joint pains without redness or inflammation, a TMJ, PEM , OI , muscle aches all over the body, IBS, lactose intolerance, severe reflux, i suspect gastroparesis (that is very hard to diagose or prove).I also have polydipsia and polyurea and interstitial cystitis and nocturia - i start peeing a lot from about 7 pm onwards most nights. I also have dizziness and frequent infections - usually bronchitis/ pneumonia and every 2 months or so if i dont take lots of vitamin supps. i may have more symptoms, I have alit of about 30 wrtiten somewhere... ah yes tight muscles and frequent muscle spasms cramps and sprains, easy bruising. etc. also sleep disturbances. I usually get to sleep Ok then wake about 4 am; unlwess i have overdone it that day then i may have trouble sleeping .. th tired but wired feeling people discuss... could that not be due to adrenaline??
other symptoms I have include apparent blood sugar swings and difficulty concentrating, I ahve no nausea or vomiting and no severe pain...just the constatn muscel ahes I had for years. they stopped 3 days after I started taking d- ribose and I have been taking it ever since and I think that is why, unless I exercise (when muschel paind and PEM recommence) , I feel pretty good most of the time as long as I lie in bed most the time !
yes i usually have no energy and need to lie down all the time but I have occasional days when I am perfecly fine and can do anything ...always followed by a crash.the next day (or sometimes delayed til the day after that) which includes brain fog headache, inability to get out of bed. I am about 2- 3 on the bell disability scale; I also have bad handwriting ...ie it has deteriorated... and disappearing moons on my fingernails.- ie they were there once but have gone on the ring and little finger and almost gone on index and middle finger.
Some increase in energy levels in the evenings is apparenty not atypical of ME.
I stay lying down when I wake at 3 or 4 am ....what can you do at that hour? lol make big plans
I usually try to get back to sleep, if tat fails i may watch a dvd until I am able to sleep.
I have been researching ME for several years now since I was diagnosed and though I know people have talked about OI POTS and so forth, no on has tested for a relatively direct correlation between upright posture and ME. Once it was pointed out to me it seems apparent that the correlation is there in me, though it is not always immediate, and the time lapse could indeed be explained by the fact that csf production is impeded; so in addition to low blood levels to the brain and adrenalin releases and blood sugar swings you may have low cerebro-spinal fludk levels which coudl take a day or so to manifest and may explain the time lagesometimes observed between activity and onset of PEM.
OI is very hard to diagnose; i had lying standing blood pressures done 20 mins at 2 (?or five) min intervals each at least 5 times and no drop showed until about the fifth occasion that they were measured. then i showed a systolic drop of 19 mmg. ie from 125 to 106 the minute i stood up; however this had corrected itself back to about 124 next measure - i need to check if it is done 2 or five minutely. Apparently the drop in BP often does not show on measuring until you are in your 80 s.
no, not at all. thanks very much for the interest.
not relieved by rest.... well i do not feel better after i lie down for a few hours, it takes a few whole days in bed for me to feel better; as to the misdiagnosis, i think it unlikely; I have 2 RSI's, migratory joint pains without redness or inflammation, a TMJ, PEM , OI , muscle aches all over the body, IBS, lactose intolerance, severe reflux, i suspect gastroparesis (that is very hard to diagose or prove).I also have polydipsia and polyurea and interstitial cystitis and nocturia - i start peeing a lot from about 7 pm onwards most nights. I also have dizziness and frequent infections - usually bronchitis/ pneumonia and every 2 months or so if i dont take lots of vitamin supps. i may have more symptoms, I have alit of about 30 wrtiten somewhere... ah yes tight muscles and frequent muscle spasms cramps and sprains, easy bruising. etc. also sleep disturbances. I usually get to sleep Ok then wake about 4 am; unlwess i have overdone it that day then i may have trouble sleeping .. th tired but wired feeling people discuss... could that not be due to adrenaline??
other symptoms I have include apparent blood sugar swings and difficulty concentrating, I ahve no nausea or vomiting and no severe pain...just the constatn muscel ahes I had for years. they stopped 3 days after I started taking d- ribose and I have been taking it ever since and I think that is why, unless I exercise (when muschel paind and PEM recommence) , I feel pretty good most of the time as long as I lie in bed most the time !
yes i usually have no energy and need to lie down all the time but I have occasional days when I am perfecly fine and can do anything ...always followed by a crash.the next day (or sometimes delayed til the day after that) which includes brain fog headache, inability to get out of bed. I am about 2- 3 on the bell disability scale; I also have bad handwriting ...ie it has deteriorated... and disappearing moons on my fingernails.- ie they were there once but have gone on the ring and little finger and almost gone on index and middle finger.
Some increase in energy levels in the evenings is apparenty not atypical of ME.
I stay lying down when I wake at 3 or 4 am ....what can you do at that hour? lol make big plans
I usually try to get back to sleep, if tat fails i may watch a dvd until I am able to sleep.
I have been researching ME for several years now since I was diagnosed and though I know people have talked about OI POTS and so forth, no on has tested for a relatively direct correlation between upright posture and ME. Once it was pointed out to me it seems apparent that the correlation is there in me, though it is not always immediate, and the time lapse could indeed be explained by the fact that csf production is impeded; so in addition to low blood levels to the brain and adrenalin releases and blood sugar swings you may have low cerebro-spinal fludk levels which coudl take a day or so to manifest and may explain the time lagesometimes observed between activity and onset of PEM.
OI is very hard to diagnose; i had lying standing blood pressures done 20 mins at 2 (?or five) min intervals each at least 5 times and no drop showed until about the fifth occasion that they were measured. then i showed a systolic drop of 19 mmg. ie from 125 to 106 the minute i stood up; however this had corrected itself back to about 124 next measure - i need to check if it is done 2 or five minutely. Apparently the drop in BP often does not show on measuring until you are in your 80 s.
Allyson
Maybe the effects of standing in ME patients aren't highlighted so much in Australia? My testing really did investigate the effects of standing on my ME symptoms, thoroughly and systemically. My doctor was very clear that standing would make my symptoms worse--and certainly recommended lying down when it was possible. He even told us to lie down in a store if our symptoms were exacerbated by shopping (guess that should be WHEN rather than if!
)
PEM is pretty thoroughly investigated too.
It's just that many doctors aren't aware of this research and the testing options available. Many ME specialists prescribe a TTT as part of testing, and when done with all the "add-ons" appropriate for ME, it is a pretty comprehensive systemic test on the effects of standing.
In your case, since you would have had EDs all your life, was there a time earlier in your life when you didn't have all the ME symptoms you have now? That is one of the factors that doesn't fit for me--I had EDs from birth but ME developed much later, and I do have a lot of viral and bacterial infections.
How does this fit in your case?
Best,
Sushi
Maybe the effects of standing in ME patients aren't highlighted so much in Australia? My testing really did investigate the effects of standing on my ME symptoms, thoroughly and systemically. My doctor was very clear that standing would make my symptoms worse--and certainly recommended lying down when it was possible. He even told us to lie down in a store if our symptoms were exacerbated by shopping (guess that should be WHEN rather than if!
)PEM is pretty thoroughly investigated too.
It's just that many doctors aren't aware of this research and the testing options available. Many ME specialists prescribe a TTT as part of testing, and when done with all the "add-ons" appropriate for ME, it is a pretty comprehensive systemic test on the effects of standing.
In your case, since you would have had EDs all your life, was there a time earlier in your life when you didn't have all the ME symptoms you have now? That is one of the factors that doesn't fit for me--I had EDs from birth but ME developed much later, and I do have a lot of viral and bacterial infections.
How does this fit in your case?
Best,
Sushi
thanks Sushi, you are the first person I have seen who has said they had standing inverstigated so thoroughly; I do indeed lie down in stores and cinemas, and dread queus.
EDS type 3 as i understand it often does not show many symptoms until later in life ... more reason why ME could be the same illness manifesting later; I dont recall any syumptoms early in life but i always had frequent sore throats, fainted at about 12-13 years old and got 3-4 bouts of severe migraine about 18 -19. ME symtoms at first became aware of at about 24 or 25 years old but saw countless doctors and naturopaths etc for years until anyone did moe that a blood test and told me I was OK ( I was NOT OK). Then even though I was fairly sure i had what was then called CFS i read that there was no cure or treatment so did not bother chasisng a diagnosis for long time til i read there were some things helping the condition.
re the TTT- I cannot see the point of having one and it makes a lot of people crash..
Allyson,
Yes, a proper TTT is a very hard test, but it is good at diagnosing OI and showing the effects of standing systemically. It is one way of directly correlating standing with ME symptoms--provided your doctor designs the test that way.
Sushi
Yes, a proper TTT is a very hard test, but it is good at diagnosing OI and showing the effects of standing systemically. It is one way of directly correlating standing with ME symptoms--provided your doctor designs the test that way.
Sushi
Allyson, do you know which criteria of ME you were diagnosed with?
From what you are writing it sounds as if you are saying
I can go to sleep normally, wake at 4am and then stay in bed. However the "good" feeling I have at 4am disappears and although I am lying down I don't feel well by 8am.
I'm wondering how you would explain the EDS covering all your symptoms with this occuring?
I'm not sure what you mean by misdiagnosis. You either have, ME, CFS, ME+EDS etc. If you have EDS and it covers all of your symptoms then the ME was a misdiagnosis.
The heading in your title is "Is ME due to Ehelrs-Danlos Syndrome "stretchy veins". Obviously, this is not the case as EDS does not occur in epidemics. EDS does not match the description of the epidemics and the work of the early ME pioneers like Ramsay, Richardson.
Maybe the question should be "are my own individual symptoms due to EDS or to ME or both"? It's hard to determine given what you have written as you don't appear to have had ME from one of the recognised epidemics.
It would have taken an examination by a doctor who knew about ME (as per Ramsay as you were diagnosed so long ago) to determine if you fitted the criteria. They would have had to rule out other possibilities and maybe EDS wasn't known about then because it was so long ago?
The early morning well/unwell would be interesting to check with cortisol levels to see if they correspond. This could also explain why you feel better at 7pm as well.
The days of feeling perfectly fine would be something that an ME expert would be interested in analysing. If you have EDS is that normal?
There's a lot to your case that needs a fine mind on it. With ME and CFS there are so many other diseases that need to be ruled out and tested for. As time goes on more and more people who will have once been diagnosed will find it is something completely different. That is until we have a proper test for ME.
From what you are writing it sounds as if you are saying
I can go to sleep normally, wake at 4am and then stay in bed. However the "good" feeling I have at 4am disappears and although I am lying down I don't feel well by 8am.
I'm wondering how you would explain the EDS covering all your symptoms with this occuring?
I'm not sure what you mean by misdiagnosis. You either have, ME, CFS, ME+EDS etc. If you have EDS and it covers all of your symptoms then the ME was a misdiagnosis.
The heading in your title is "Is ME due to Ehelrs-Danlos Syndrome "stretchy veins". Obviously, this is not the case as EDS does not occur in epidemics. EDS does not match the description of the epidemics and the work of the early ME pioneers like Ramsay, Richardson.
Maybe the question should be "are my own individual symptoms due to EDS or to ME or both"? It's hard to determine given what you have written as you don't appear to have had ME from one of the recognised epidemics.
It would have taken an examination by a doctor who knew about ME (as per Ramsay as you were diagnosed so long ago) to determine if you fitted the criteria. They would have had to rule out other possibilities and maybe EDS wasn't known about then because it was so long ago?
The early morning well/unwell would be interesting to check with cortisol levels to see if they correspond. This could also explain why you feel better at 7pm as well.
The days of feeling perfectly fine would be something that an ME expert would be interested in analysing. If you have EDS is that normal?
There's a lot to your case that needs a fine mind on it. With ME and CFS there are so many other diseases that need to be ruled out and tested for. As time goes on more and more people who will have once been diagnosed will find it is something completely different. That is until we have a proper test for ME.
If I don't lay down I get laid down. It used to be an overwhelming urge to sit. Then I started to have severe upright symptoms both sitting and standing. Seizure like episodes, severe chest pains and collapsing.
Last few days i have enjoyed sitting up a bit. Had my HR monitor on and noticed i was maintaining steady HR whilst sitting which is not usual these days. Generally if i am on my own I will find myself sitting up and realise it was just natural desire and ability to do so coming back. But if i am around people and do it, it usually means that I am tuning out my symptoms and forget that I am upright and then pay for it.
The increase in need to lay down has correlated with worse cognitive problems. Forcing myself to do complex thinking only makes me feel really awful. I can type laying down and watch tv and read. Need to do something to take my mind off not doing all the things that need to be done and racing thoughts.
According to Cheney's early CFS theories it seemed that it was not just low blood volume but a pumping problem as well. People with EDS can have problems with their heart valves and I wonder if its not just stretchy veins but heart problems too. The lack of blood flow to the brain could cause the cognitive problems but also the sympathetic nervous system response in reaction to reduce blood flow could explain mood changes (in my case).
Of course the sensitivity to drugs, chemicals etc further complicates things.EDs sufferers are known to have this too.
I just wish I knew that walking was not the best thing as it used to be my favourite thing to do and it was what i was convinced i needed despite ending up with a headache.
TO add to the confusion, those with EDS often have cervical problems which are made worse in upright position.
There are people with EDS and POTS who are fatigued but they do not have the problems with simple things like talking on the phone or having a visitor (which I do). or severe problems from having to do something like make a decision, like what to put on a shopping list. It seems we are in the early days of trying to understand this. As I was only dx with EDS last year I am still pretty new to the research, having focused purely on CFS previously.
Sorting out which symptoms are coming from which condition is difficult.....I tend to do it by looking at the EDS who do not have the same problems with exertion/cognition. They actually tend to be the ones who have more severe dislocations etc but can do things in wheelchairs (which I have problems using).
Fatigue is part of EDS and i wonder how much this complicates the issue. The other issue is if you have EDS you have pain (hypermobile type). Pain can effect your heart according to Cheney.
Last few days i have enjoyed sitting up a bit. Had my HR monitor on and noticed i was maintaining steady HR whilst sitting which is not usual these days. Generally if i am on my own I will find myself sitting up and realise it was just natural desire and ability to do so coming back. But if i am around people and do it, it usually means that I am tuning out my symptoms and forget that I am upright and then pay for it.
The increase in need to lay down has correlated with worse cognitive problems. Forcing myself to do complex thinking only makes me feel really awful. I can type laying down and watch tv and read. Need to do something to take my mind off not doing all the things that need to be done and racing thoughts.
According to Cheney's early CFS theories it seemed that it was not just low blood volume but a pumping problem as well. People with EDS can have problems with their heart valves and I wonder if its not just stretchy veins but heart problems too. The lack of blood flow to the brain could cause the cognitive problems but also the sympathetic nervous system response in reaction to reduce blood flow could explain mood changes (in my case).
Of course the sensitivity to drugs, chemicals etc further complicates things.EDs sufferers are known to have this too.
I just wish I knew that walking was not the best thing as it used to be my favourite thing to do and it was what i was convinced i needed despite ending up with a headache.
TO add to the confusion, those with EDS often have cervical problems which are made worse in upright position.
There are people with EDS and POTS who are fatigued but they do not have the problems with simple things like talking on the phone or having a visitor (which I do). or severe problems from having to do something like make a decision, like what to put on a shopping list. It seems we are in the early days of trying to understand this. As I was only dx with EDS last year I am still pretty new to the research, having focused purely on CFS previously.
Sorting out which symptoms are coming from which condition is difficult.....I tend to do it by looking at the EDS who do not have the same problems with exertion/cognition. They actually tend to be the ones who have more severe dislocations etc but can do things in wheelchairs (which I have problems using).
Fatigue is part of EDS and i wonder how much this complicates the issue. The other issue is if you have EDS you have pain (hypermobile type). Pain can effect your heart according to Cheney.
Testing for the dysautonomia conditions (eg POTS etc) can be quite important as if its shown you have those coexisting, it is important to treat them.. otherwise they just make your condition far worst. The OI issues of them or low blood flow if you find you have something like POTS, can affect MANY different things in the body.
Its a real pity that may have these issues but dont even know so are being untreated. Treating my dysautonomnia (POTS with low blood volume in my case) thou it still isnt good, but treating this has increased what I can do by around 50%
Some with these coexisting ME conditions have been able to go back to work part time after treating this symptom.
Its a real pity that may have these issues but dont even know so are being untreated. Treating my dysautonomnia (POTS with low blood volume in my case) thou it still isnt good, but treating this has increased what I can do by around 50%
Some with these coexisting ME conditions have been able to go back to work part time after treating this symptom.
Same thing would happen to me if I did the yoga exercises at home. (yoga was worst for me then walking due to low blood volume issues).
Many of us need to wear full length compression stockings (I need to wear them right up to top of thighs, im considering waist highs next time) and some need stronger pressures then others.. pressure of 30 is a common pressure needed for many of us.
It isnt necessarily signaling high BP .. it commonly occurs also in those who get blood pooling in legs when upright which is common in POTSy ME patients. (so seems to be some kind of issue with the veins). If its blood pooling it would be best to elevate the feet.
this is interesting
Cheney did a big talk about his theories on heart problems at the 2011 IiME conference Sandgroper. We don't always get to know what his current thoughts are unless we are a patient or a member of his email list (paid). IiME do a DVD of the conference if you want to know what he was thinking in 2011. Lots of information about Patent foramen ovales and other problems.
Have you had a SPECT can or anything that would confirm low blood flow to the brain?
You'll probably find other threads on the Chiara stuff on this and other CFS forums as it crops up every few years.
Sadgroper, I wonder how you would get on with the ECCP machine that Dr Enlander uses
http://forums.phoenixrising.me/inde...is-very-helpful-my-daughter-helped-alot.6856/
Have you had a SPECT can or anything that would confirm low blood flow to the brain?
You'll probably find other threads on the Chiara stuff on this and other CFS forums as it crops up every few years.
Sadgroper, I wonder how you would get on with the ECCP machine that Dr Enlander uses
http://forums.phoenixrising.me/inde...is-very-helpful-my-daughter-helped-alot.6856/
no appaerently elevating the feet for long periods is not good tania, (even though it feels good); my doc tells me this signals to your kidneys or baro receptors that you have a high BP as a lot of fluid is thus forced into the upper body, thus causing BP to drop even further.
Ditto for wearing compression clothing when you are lying down apparently;
yes I find only waist high comprssion helps me.... but it need only be on the waist ..not even the legs - apparently because it is the large veins in the abdomen that cause the most harm with pooling (as they hold so much blood). Makes sense, that might also explain why I feel pilates helps- it really tightens the abdo muscles.
Ditto for wearing compression clothing when you are lying down apparently;
yes I find only waist high comprssion helps me.... but it need only be on the waist ..not even the legs - apparently because it is the large veins in the abdomen that cause the most harm with pooling (as they hold so much blood). Makes sense, that might also explain why I feel pilates helps- it really tightens the abdo muscles.
ukxmrv, I was only diagnosed only 2 years ago with ME and one year ago with EDS (despite seeing doctors for over 20 years looking for help and a diagnosis)
not everyone catches ME in an epidemic...infact I would say cluster outbreaks are rather rare than the norm for this illness? I have only seen 3 or three documented cluster outbreaks and repeat that they may be a different diesease ... like Lyme disease?
re my symptoms - at the moment I am doing nothing and taking 50 plus supps a day including IM vit b 12
when I worked it was a totally different picture...I would be totally wiped out for 4 daysw after one days work.
I am liking the idea that low cfs plays a part ... for me that would expaoin brain fog, headaches adn the dalayed onset of a crash that sometimse occurs... and why it feels like a bad hangover.
not everyone catches ME in an epidemic...infact I would say cluster outbreaks are rather rare than the norm for this illness? I have only seen 3 or three documented cluster outbreaks and repeat that they may be a different diesease ... like Lyme disease?
re my symptoms - at the moment I am doing nothing and taking 50 plus supps a day including IM vit b 12
when I worked it was a totally different picture...I would be totally wiped out for 4 daysw after one days work.
I am liking the idea that low cfs plays a part ... for me that would expaoin brain fog, headaches adn the dalayed onset of a crash that sometimse occurs... and why it feels like a bad hangover.
yea but Tania, how do you know the bad effects are form the yoga poses and not from everything els you did that day...stand up to walk to the toilet etc...
my point is unless someone does a study with a control group who do NOT stand upor sit up at all we cannot tell what is due to upright posture and what is due to other things
my point is unless someone does a study with a control group who do NOT stand upor sit up at all we cannot tell what is due to upright posture and what is due to other things
Sushi firther to your question about early symptoms... until i noticed them in my mid 20s
as a teenager i drank tea and instant coffee all day long ...as was rather the norm then... so that may have masked any symptoms, as it does in many people today I think.
I always felt dreadful in the heat though and avoided it but I did not know that was not normal then.
as a teenager i drank tea and instant coffee all day long ...as was rather the norm then... so that may have masked any symptoms, as it does in many people today I think.
I always felt dreadful in the heat though and avoided it but I did not know that was not normal then.
thanks tania, what treatment did you find helped you please?
Allyson, the whole original diagnostic description of ME was based on the original epidemics of ME. If you have a look on the internet you will find lists if them and there were far more than 3. There is no evidence that they were Lyme and the agent has never been found.
More recently there have been attempts to write new diagnostic criteria using the term ME.
Do you know what criteria of ME you were diagnosed with?There are very few doctors left in the world who could have diagnosed someone with the old Ramsay version of ME. He was one of the experts of the epidemics and wrote the descriptions of it.
It may be that you were diagnosed with one of the new criterias and it would be interesting to see if EDS is an exclusion for one of these.
More recently there have been attempts to write new diagnostic criteria using the term ME.
Do you know what criteria of ME you were diagnosed with?There are very few doctors left in the world who could have diagnosed someone with the old Ramsay version of ME. He was one of the experts of the epidemics and wrote the descriptions of it.
It may be that you were diagnosed with one of the new criterias and it would be interesting to see if EDS is an exclusion for one of these.
There was a patient I knew who had Chiari malformation and ME/CFS. He had surgery where they basically carved out the back of his skull. So you could push on the back of his brain. Not good. It did nothing to improve his condition. He remained disabled and in pain. I would forget ever getting this done. He was desperate and talked a brain surgeon into doing it.
The key to most patients with ME/CFS is the EDS, not the Chiari's. The doctor mentioned that 12% of the patients with Chiari were EDS. I'll bet the percentage is a lot higher. But there is no accurate of assessing what is EDS and what is not. Simply asking a patient to bend back his thumb or touch his toes is not a good assessment.
The key to most patients with ME/CFS is the EDS, not the Chiari's. The doctor mentioned that 12% of the patients with Chiari were EDS. I'll bet the percentage is a lot higher. But there is no accurate of assessing what is EDS and what is not. Simply asking a patient to bend back his thumb or touch his toes is not a good assessment.
If one has low blood volume thou.. raising the legs wouldnt be forcing a lot of fluid into the upper body but logically be rather just giving the upper body a more normal blood volume to the upper body places eg the brain and other body parts.
Some researchers have found that we have blood volume levels low enough to be causing shock in a normal person.. eg 2 Litres less blood then normal (I may of seen something somewhere saying that some of us even have less blood then that).
Interesting that you've found that you only need the compression around your abdomen and not legs too. Im always wondering how much Im pooling in my abdomen (that area of me really gets bigger at times). I dont noticably see my legs pooling (thou did occassionally in the past).
Some researchers have found that we have blood volume levels low enough to be causing shock in a normal person.. eg 2 Litres less blood then normal (I may of seen something somewhere saying that some of us even have less blood then that).
Interesting that you've found that you only need the compression around your abdomen and not legs too. Im always wondering how much Im pooling in my abdomen (that area of me really gets bigger at times). I dont noticably see my legs pooling (thou did occassionally in the past).