ME and Fibromyalgia Awareness Day 2016!
Today is International Awareness Day for ME and Fibromyalgia!
ME/CFS goes by many different names, and there is very little known about it. It is diagnosed from a collection of symptoms where there is no other apparent cause- these include extreme fatigue, dizziness, sleep problems (too much or too little and unrefreshing), cognitive difficulties, anxiety and depression but there are many more and everyone experiences it differently. Post-exertional malaise (PEM) must also be present, where a person does something but the 'payback' is delayed by up to three days. Severity can range from those who can live a relatively normal life but with rest days, to those who are bedbound and can do almost nothing without help.
Fibromyalgia is similar to ME but more focused on pain. This is felt in all areas of the body as well as in painful trigger points and patients are also often more sensitive to pain from external sources due to overactive nerve signals. In addition, the brain also tends to lack serotonin to help to clear the pain signals, so they stick around for longer than usual. Other symptoms are similar to ME, but without the payback phase. Again like ME, some people with fibromyalgia live relatively normal lives, and some are completely unable to look after themselves - and you can change in severity day to day.
There is no cure for either illness and treatment is normally a combination of medication for specific symptoms, talking therapies to change how people view their illness and lifestyle changes to help manage it. Around 250,000 people in the UK have ME, and it's thought that up to 1 in 20 people could be affected by fibromyalgia to some extent.
Many people with ME and fibro also have other illnesses. Common ones include Ehlers-Danlos (EDS) and hypermobility syndromes, where joints are less stable due to more flexible ligaments. Pain, muscle fatigue, subluxation (partial dislocation) and dislocation are all common where joints are too loose. EDS is genetic, so check your parents and siblings too. Another two are PoTS and neurally mediated hypotension (NMH), where problems with the autonomic nervous system interfere with the normal response to standing up. This causes heart rate to rise drastically in PoTS and fall in NMH, both of which lead to fainting if standing continues. Problems from this again include increased fatigue as the stress response is often activated when it isn't needed.
There are many ways to describe these conditions. ME on a good day feels like the worst flu you've ever had, which you're trying to work through. Fibro is like being hit by a bus. There is also 'spoon theory' by Christine Miserandio where you have a limited amount of spoons to get through the day and different activities take different amounts. You can use extra, but then have fewer for the next day. Have a go below:
So that's an overview! More information can be found on the ME Association and Fibromyalgia Action UK websites, as well as Association of Young People with ME. There are various 'spoonie' support groups on facebook and twitter (check out the hashtag #spoonieproblems) and our own support thread here, which has people with both.
What would you guys like to know about living with these conditions, or about them in general? What experiences do you have with them? Myself and @minimarshmallow will be around over the next few days- a big thank you to her for helping with this thread! Please note you can post anonymously in this thread
ME/CFS goes by many different names, and there is very little known about it. It is diagnosed from a collection of symptoms where there is no other apparent cause- these include extreme fatigue, dizziness, sleep problems (too much or too little and unrefreshing), cognitive difficulties, anxiety and depression but there are many more and everyone experiences it differently. Post-exertional malaise (PEM) must also be present, where a person does something but the 'payback' is delayed by up to three days. Severity can range from those who can live a relatively normal life but with rest days, to those who are bedbound and can do almost nothing without help.
Fibromyalgia is similar to ME but more focused on pain. This is felt in all areas of the body as well as in painful trigger points and patients are also often more sensitive to pain from external sources due to overactive nerve signals. In addition, the brain also tends to lack serotonin to help to clear the pain signals, so they stick around for longer than usual. Other symptoms are similar to ME, but without the payback phase. Again like ME, some people with fibromyalgia live relatively normal lives, and some are completely unable to look after themselves - and you can change in severity day to day.
There is no cure for either illness and treatment is normally a combination of medication for specific symptoms, talking therapies to change how people view their illness and lifestyle changes to help manage it. Around 250,000 people in the UK have ME, and it's thought that up to 1 in 20 people could be affected by fibromyalgia to some extent.
Many people with ME and fibro also have other illnesses. Common ones include Ehlers-Danlos (EDS) and hypermobility syndromes, where joints are less stable due to more flexible ligaments. Pain, muscle fatigue, subluxation (partial dislocation) and dislocation are all common where joints are too loose. EDS is genetic, so check your parents and siblings too. Another two are PoTS and neurally mediated hypotension (NMH), where problems with the autonomic nervous system interfere with the normal response to standing up. This causes heart rate to rise drastically in PoTS and fall in NMH, both of which lead to fainting if standing continues. Problems from this again include increased fatigue as the stress response is often activated when it isn't needed.
There are many ways to describe these conditions. ME on a good day feels like the worst flu you've ever had, which you're trying to work through. Fibro is like being hit by a bus. There is also 'spoon theory' by Christine Miserandio where you have a limited amount of spoons to get through the day and different activities take different amounts. You can use extra, but then have fewer for the next day. Have a go below:
So that's an overview! More information can be found on the ME Association and Fibromyalgia Action UK websites, as well as Association of Young People with ME. There are various 'spoonie' support groups on facebook and twitter (check out the hashtag #spoonieproblems) and our own support thread here, which has people with both.
What would you guys like to know about living with these conditions, or about them in general? What experiences do you have with them? Myself and @minimarshmallow will be around over the next few days- a big thank you to her for helping with this thread! Please note you can post anonymously in this thread
(edited 7 years ago)
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That sounds very difficult for anyone who has one of the conditions you mention to deal with @furryface12. 
You mention that that specific symptoms can be tackled. Do stimulants (like the types prescribed to those with narcolepsy) help at all?
You mention that that specific symptoms can be tackled. Do stimulants (like the types prescribed to those with narcolepsy) help at all?
Original post by Kvothe the arcane
That sounds very difficult for anyone who has one of the conditions you mention to deal with @furryface12.
You mention that that specific symptoms can be tackled. Do stimulants (like the types prescribed to those with narcolepsy) help at all?
You mention that that specific symptoms can be tackled. Do stimulants (like the types prescribed to those with narcolepsy) help at all?
Thanks
I've never heard of them being used, but I think it would be likely to make things worse. One of my warning signs for doing too much is when my energy keeps coming in bursts and I end up hyper- the more I do the worse the crashes are in between, and if the cycle continues I end up relapsing. Going back to the 'borrowing spoons' idea (yes that feels very weird to say 
) I think these would do the same thing by tricking you into thinking you have more energy than you actually have.(edited 7 years ago)
Original post by Kvothe the arcane
That sounds very difficult for anyone who has one of the conditions you mention to deal with @furryface12.
You mention that that specific symptoms can be tackled. Do stimulants (like the types prescribed to those with narcolepsy) help at all?
You mention that that specific symptoms can be tackled. Do stimulants (like the types prescribed to those with narcolepsy) help at all?
Furryface has given her specific answer above, but I just thought I'd add from a fibro perspective, I've been doing some research on fibro medications and asked people in an online support group what they take so I can look into them, and at least one drug usually used for narcolepsy etc. came up a couple of times (modafinil). It's on my list to look into its effectiveness for fibro symptoms, so I can let you know if I find any studies on it if you like?
From a personal perspective, I would probably steer clear of it. I have enough trouble sleeping anyway without putting stimulants in the mix (don't even have much caffeine at all) and similar to Furryface above, I think it may lead me to think I've got more energy than I have and go overboard and use up tomorrow's spoons as well.
Great thread
Is there any solid information on the effects of temperature on either condition? My neighbour with fibro says she feels a lot better when it's warm and sunny - we barely see her during the winter
I know a lot of people get ME/CFS muddled up with MS or MD (Multiple Sclerosis - a condition affecting the nerve coatings, and Muscular Dystrophy - a condition causing muscle wasting)....I'm guessing because people are a bit daft and see all acronyms as similar
Is there any solid information on the effects of temperature on either condition? My neighbour with fibro says she feels a lot better when it's warm and sunny - we barely see her during the winter
I know a lot of people get ME/CFS muddled up with MS or MD (Multiple Sclerosis - a condition affecting the nerve coatings, and Muscular Dystrophy - a condition causing muscle wasting)....I'm guessing because people are a bit daft and see all acronyms as similar
I don't have CFS or fibro, but I do have Ehlers-Danlos syndrome, hypermobility type with mixed presentation. Spoon theory has helped me deal with a lot of the issues that come along with EDS. Actually ended up introducing it to one of my best friends who has fibro and it's helped her a lot!
Thanks for the heads up that it's awareness day, I didn't know. Hope you're both doing as well as can be.
Thanks for the heads up that it's awareness day, I didn't know. Hope you're both doing as well as can be.
Original post by PQ
Great thread
Is there any solid information on the effects of temperature on either condition? My neighbour with fibro says she feels a lot better when it's warm and sunny - we barely see her during the winter
I know a lot of people get ME/CFS muddled up with MS or MD (Multiple Sclerosis - a condition affecting the nerve coatings, and Muscular Dystrophy - a condition causing muscle wasting)....I'm guessing because people are a bit daft and see all acronyms as similar
Is there any solid information on the effects of temperature on either condition? My neighbour with fibro says she feels a lot better when it's warm and sunny - we barely see her during the winter
I know a lot of people get ME/CFS muddled up with MS or MD (Multiple Sclerosis - a condition affecting the nerve coatings, and Muscular Dystrophy - a condition causing muscle wasting)....I'm guessing because people are a bit daft and see all acronyms as similar
I don't know if there's anything solid but it generally seems like pain is worse when it's cold. The pool I was swimming in was so cold my knees started to seize up!
I also know from my physio that cold can be bad for muscle fatigue and anything postural like my upper back pain because you huddle yourself up and tense yourself up against the cold. This causes pain which causes further tension and it's a circle! I generally break the circle with a hot water bottle. That said, ice packs work for some people and for people with anything that gets swollen (I don't have swelling anywhere but I know some people do).
I also find a lot of people confuse ME with MS in particular, same way a lot of people confuse ADD and ODD.
Original post by Pathway
I don't have CFS or fibro, but I do have Ehlers-Danlos syndrome, hypermobility type with mixed presentation. Spoon theory has helped me deal with a lot of the issues that come along with EDS. Actually ended up introducing it to one of my best friends who has fibro and it's helped her a lot!
Thanks for the heads up that it's awareness day, I didn't know. Hope you're both doing as well as can be.
Thanks for the heads up that it's awareness day, I didn't know. Hope you're both doing as well as can be.
I suspect I have EDS, the whole family are hypermobile and have the stretchy skin etc. but we're complicated a little with the fact my brother gets no pain and my mum has loads but she does also have rheumatoid arthritis. At this point I'm just unsure how natural selection lead to us...
My physio talks about a lot of overlap with hypermobility and fibromyalgia, I imagine you suffer the same fatigue from trying to stabilise joints and may have received the same advice to be generally stronger to help.
Spoon theory is the most useful thing I've come across with chronic illness and pain. A friend with MS introduced it to me a few years ago and I introduced my mum to it and she took to it like a duck to water, and she's been chronically ill since she was 14…
I'm probably the best I can be right now, I love that way of phrasing it. I haven't had to take any pain medication yet today and I'm off work this afternoon to go to the hospital to see my physio. Glad it's a nice day!
Hope you are the same, love and spoons if you're not and even if you are!
I always forget about this day, should mark it on my calendar
It's a double-edged sword for a lot of people. Caffeine for example does indeed increase ATP functioning while it's active which means more energy, particularly in ME sufferers who have difficulties with their ATP system. However, I imagine you've heard of "caffeine crash"? Yep, a million times worse when you're an ME sufferer Stimulants can also lower your perceived exertion levels and cause you to use more physical "resources" than your body would have liked, which can lead to some pretty nasty Post Exertional Malaise.
I've tried Modafinil and it was practically useless for me.
Original post by Kvothe the arcane
That sounds very difficult for anyone who has one of the conditions you mention to deal with @furryface12.
You mention that that specific symptoms can be tackled. Do stimulants (like the types prescribed to those with narcolepsy) help at all?
You mention that that specific symptoms can be tackled. Do stimulants (like the types prescribed to those with narcolepsy) help at all?
It's a double-edged sword for a lot of people. Caffeine for example does indeed increase ATP functioning while it's active which means more energy, particularly in ME sufferers who have difficulties with their ATP system. However, I imagine you've heard of "caffeine crash"? Yep, a million times worse when you're an ME sufferer
Stimulants can also lower your perceived exertion levels and cause you to use more physical "resources" than your body would have liked, which can lead to some pretty nasty Post Exertional Malaise.I've tried Modafinil and it was practically useless for me.
I have some links to articles and stuff regarding fibro and stuff like Reynaud's phenomenon, eyesight, all sorts of informational stuff, but they're on my computer and as I've said in my post above I'm on my way to the hospital this afternoon so I will see what I've got when I get home after 5.
Original post by minimarshmallow
I suspect I have EDS, the whole family are hypermobile and have the stretchy skin etc. but we're complicated a little with the fact my brother gets no pain and my mum has loads but she does also have rheumatoid arthritis. At this point I'm just unsure how natural selection lead to us...
My physio talks about a lot of overlap with hypermobility and fibromyalgia, I imagine you suffer the same fatigue from trying to stabilise joints and may have received the same advice to be generally stronger to help.
Spoon theory is the most useful thing I've come across with chronic illness and pain. A friend with MS introduced it to me a few years ago and I introduced my mum to it and she took to it like a duck to water, and she's been chronically ill since she was 14…
I'm probably the best I can be right now, I love that way of phrasing it. I haven't had to take any pain medication yet today and I'm off work this afternoon to go to the hospital to see my physio. Glad it's a nice day!
Hope you are the same, love and spoons if you're not and even if you are!
My physio talks about a lot of overlap with hypermobility and fibromyalgia, I imagine you suffer the same fatigue from trying to stabilise joints and may have received the same advice to be generally stronger to help.
Spoon theory is the most useful thing I've come across with chronic illness and pain. A friend with MS introduced it to me a few years ago and I introduced my mum to it and she took to it like a duck to water, and she's been chronically ill since she was 14…
I'm probably the best I can be right now, I love that way of phrasing it. I haven't had to take any pain medication yet today and I'm off work this afternoon to go to the hospital to see my physio. Glad it's a nice day!
Hope you are the same, love and spoons if you're not and even if you are!
Ahh, yeah, see my dad is "subsyndromal" which basically means he has the loose joints and stretchy skin, etc. but doesn't have the pain component, nor does he have recurrent dislocations, he does sublux occasionally though.
Me either. I mean, I can understand the cystic fibrosis mutation (prevents cholera), etc. But EDS?? I don't get it. haha.
Yeah, I do find it difficult though - my shoulders pop out a lot, as do my hips. So it's hard to do anything strength related, even simple things like holding a heavy-ish bag can be problematic.
But yeah, the fatigue, brain fog, etc., fibro and EDS have a lot of overlap. I was never offered physio.
Glad you're doing as well as you can! Sending spoons to you too.
Thank you, having a bad day. Shoulder's subluxed so many times already. Driving me nuts!
----
Re: coldness - I have a lot of problems with coldness and also humidity...Like too cold, my joints hate it, too hot and it's humid, my joints hate that too. Can't win.
(edited 7 years ago)
Thanks for posting, educating and raising awareness those who don't know too much about our conditions. For me I have quite the experience with the onset of Cfs and ME and now it's transpiring conditions of POTs and EDS of late. Not to mention the accompanied side effects of these conditions. Hopefully science will catch up with us and help us all.
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My dad has had Fibro for many years and has migraines that keep him in bed for hours most days. But I think he is the bravest person I know as he still goes to work despite this. He knows that we can all have a better quality of life if he has some kind of income and that makes me wish so hard that I can return the favour!
I was wondering if anyone knows if Fibro can be passed down? The doctor my dad has doesn't think Fibro exists so whenever he asks her anything about it she is not helpful at all. It was only after he was admitted to hospital after nearly dying whilst having a fit that they told him what it was that he had.
I really feel for anyone suffering with either ME or Fibro or related illnesses, I just hope one day for everyones sake GPs and Doctors who don't believe Fibro is a thing will see the light and actually help people who suffer.
I was wondering if anyone knows if Fibro can be passed down? The doctor my dad has doesn't think Fibro exists so whenever he asks her anything about it she is not helpful at all. It was only after he was admitted to hospital after nearly dying whilst having a fit that they told him what it was that he had.
I really feel for anyone suffering with either ME or Fibro or related illnesses, I just hope one day for everyones sake GPs and Doctors who don't believe Fibro is a thing will see the light and actually help people who suffer.
Original post by melinae
My dad has had Fibro for many years and has migraines that keep him in bed for hours most days. But I think he is the bravest person I know as he still goes to work despite this. He knows that we can all have a better quality of life if he has some kind of income and that makes me wish so hard that I can return the favour!
I was wondering if anyone knows if Fibro can be passed down? The doctor my dad has doesn't think Fibro exists so whenever he asks her anything about it she is not helpful at all. It was only after he was admitted to hospital after nearly dying whilst having a fit that they told him what it was that he had.
I really feel for anyone suffering with either ME or Fibro or related illnesses, I just hope one day for everyones sake GPs and Doctors who don't believe Fibro is a thing will see the light and actually help people who suffer.
I was wondering if anyone knows if Fibro can be passed down? The doctor my dad has doesn't think Fibro exists so whenever he asks her anything about it she is not helpful at all. It was only after he was admitted to hospital after nearly dying whilst having a fit that they told him what it was that he had.
I really feel for anyone suffering with either ME or Fibro or related illnesses, I just hope one day for everyones sake GPs and Doctors who don't believe Fibro is a thing will see the light and actually help people who suffer.
This is a direct link of asking a website if it's genetic. Not sure if it helps.
"Is fibromyalgia hereditary?
Answers from Kevin C. Fleming, M.D.
Fibromyalgia isn't passed directly from parents to children, but the disorder does appear to cluster within families.
The odds of developing fibromyalgia are several times higher in the immediate families of people with fibromyalgia than in families in which no one has fibromyalgia.
In fact, studies of DNA from family members of people with fibromyalgia and other chronic pain syndromes have turned up a number of genes that could help explain why these disorders seem to run in families.
Each of these genes plays a role in your nervous system's response to pain. Some of the same genes are also associated with depression and anxiety, which may be the reason why certain antidepressant medications help reduce fibromyalgia symptoms."
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My cousin has fibro and I went to sixth form with a girl who had ME (she was technically in the year above us but was resitting the year because of her illness). I also went to Malaysia with the uni recently and one of the lecturers has ME. They both sound like awful conditions. It must be very difficult to live with- stay strong!
I have Hypermobility Syndrome (which I think is the same thing or very similar to your type of EDS? Unstable joints, stretchy skin, digestive complaints, etc?). I get multiple partial dislocations a day (mostly my shoulder, kneecaps, wrist, elbow and thumb. Even carrying home the shopping can be a pest- my right elbow and wrist subluxicate, and my left shoulder is my worst joint haha!) and I have issues with lots of other joints. Also going back to the doctors soon as I've been getting tachycardic for no good reason! I met someone with Hypermobile EDS (by complete accident- she saw me covered head to toe in tape) and she describes it as "the prison guard". I hope you and your friend are doing as well as can be. Sending you love, hugs and spoons, and if you need someone to talk to, give me an inbox!
Original post by Pathway
I don't have CFS or fibro, but I do have Ehlers-Danlos syndrome, hypermobility type with mixed presentation. Spoon theory has helped me deal with a lot of the issues that come along with EDS. Actually ended up introducing it to one of my best friends who has fibro and it's helped her a lot!
Thanks for the heads up that it's awareness day, I didn't know. Hope you're both doing as well as can be.
Thanks for the heads up that it's awareness day, I didn't know. Hope you're both doing as well as can be.
I have Hypermobility Syndrome (which I think is the same thing or very similar to your type of EDS? Unstable joints, stretchy skin, digestive complaints, etc?). I get multiple partial dislocations a day (mostly my shoulder, kneecaps, wrist, elbow and thumb. Even carrying home the shopping can be a pest- my right elbow and wrist subluxicate, and my left shoulder is my worst joint haha!) and I have issues with lots of other joints. Also going back to the doctors soon as I've been getting tachycardic for no good reason! I met someone with Hypermobile EDS (by complete accident- she saw me covered head to toe in tape) and she describes it as "the prison guard". I hope you and your friend are doing as well as can be. Sending you love, hugs and spoons, and if you need someone to talk to, give me an inbox!
(edited 7 years ago)
Original post by melinae
My dad has had Fibro for many years hiand has migraines that keep him in bed for hours most days. But I think he is the bravest person I know as he still goes to work despite this. He knows that we can all have a better quality of life if he has some kind of income and that makes me wish so hard that I can return the favour!
I was wondering if anyone knows if Fibro can be passed down? The doctor my dad has doesn't think Fibro exists so whenever he asks her anything about it she is not helpful at all. It was only after he was admitted to hospital after nearly dying whilst having a fit that they told him what it was that he had.
I really feel for anyone suffering with either ME or Fibro or related illnesses, I just hope one day for everyones sake GPs and Doctors who don't believe Fibro is a thing will see the light and actually help people who suffer.
I was wondering if anyone knows if Fibro can be passed down? The doctor my dad has doesn't think Fibro exists so whenever he asks her anything about it she is not helpful at all. It was only after he was admitted to hospital after nearly dying whilst having a fit that they told him what it was that he had.
I really feel for anyone suffering with either ME or Fibro or related illnesses, I just hope one day for everyones sake GPs and Doctors who don't believe Fibro is a thing will see the light and actually help people who suffer.
I also work, but I have an amazing GP, saw one of the world's leading experts and am being treated by a specialist hospital. They're all awesome and I think it is worth finding a different doctor if yours doesn't believe in this condition that affects ao many people all the time.
I don't know about the gene thing, my consultant seemed to think it's possible but I don't think even he had any data on it. Both myself and my mum have it though
I'm back, absolutely shattered and head's all over the place though so sorry f replies make no sense
Don't have anything concrete but temperature seems to affect people in different ways from what I can tell. A lot of people with PoTS seem to struggle with heat, I've not noticed it with NMH but got so much going on and I'd never heard of it until I was diagnosed a couple of months ago so that doesn't mean it doesn't! My temperature control in general is pretty rubbish though, and once I'm too hot/cold I can't warm up/cool down.
With the second bit, there is some crossover but the acronyms are for totally different names! I've had people think I had cystic fibrosis too when I've said CFS but with other conditions I have that's possibly more understandable.
Quiet one answered this better than me, I don't know of a link specifically but there do seem to be a fair number of people with both ME and fibro with parents that also have them, so a genetic link wouldn't surprise me.
Thanks for all the replies! I guess people that have or know someone who's had them are more likely to read the thread but hopefully raised a little bit of awareness
Original post by PQ
Great thread
Is there any solid information on the effects of temperature on either condition? My neighbour with fibro says she feels a lot better when it's warm and sunny - we barely see her during the winter
I know a lot of people get ME/CFS muddled up with MS or MD (Multiple Sclerosis - a condition affecting the nerve coatings, and Muscular Dystrophy - a condition causing muscle wasting)....I'm guessing because people are a bit daft and see all acronyms as similar
Is there any solid information on the effects of temperature on either condition? My neighbour with fibro says she feels a lot better when it's warm and sunny - we barely see her during the winter
I know a lot of people get ME/CFS muddled up with MS or MD (Multiple Sclerosis - a condition affecting the nerve coatings, and Muscular Dystrophy - a condition causing muscle wasting)....I'm guessing because people are a bit daft and see all acronyms as similar
Don't have anything concrete but temperature seems to affect people in different ways from what I can tell. A lot of people with PoTS seem to struggle with heat, I've not noticed it with NMH but got so much going on and I'd never heard of it until I was diagnosed a couple of months ago so that doesn't mean it doesn't! My temperature control in general is pretty rubbish though, and once I'm too hot/cold I can't warm up/cool down.
With the second bit, there is some crossover but the acronyms are for totally different names! I've had people think I had cystic fibrosis too when I've said CFS but with other conditions I have that's possibly more understandable.
Original post by melinae
My dad has had Fibro for many years and has migraines that keep him in bed for hours most days. But I think he is the bravest person I know as he still goes to work despite this. He knows that we can all have a better quality of life if he has some kind of income and that makes me wish so hard that I can return the favour!
I was wondering if anyone knows if Fibro can be passed down? The doctor my dad has doesn't think Fibro exists so whenever he asks her anything about it she is not helpful at all. It was only after he was admitted to hospital after nearly dying whilst having a fit that they told him what it was that he had.
I really feel for anyone suffering with either ME or Fibro or related illnesses, I just hope one day for everyones sake GPs and Doctors who don't believe Fibro is a thing will see the light and actually help people who suffer.
I was wondering if anyone knows if Fibro can be passed down? The doctor my dad has doesn't think Fibro exists so whenever he asks her anything about it she is not helpful at all. It was only after he was admitted to hospital after nearly dying whilst having a fit that they told him what it was that he had.
I really feel for anyone suffering with either ME or Fibro or related illnesses, I just hope one day for everyones sake GPs and Doctors who don't believe Fibro is a thing will see the light and actually help people who suffer.
Quiet one answered this better than me, I don't know of a link specifically but there do seem to be a fair number of people with both ME and fibro with parents that also have them, so a genetic link wouldn't surprise me.
Thanks for all the replies! I guess people that have or know someone who's had them are more likely to read the thread but hopefully raised a little bit of awareness
Specialist hospital for people with musculoskeletal issues and it's at the bottom of a hill... The walk back up for my lift has pretty much done me in at this point!
I will go on my computer later but happy to still answer any questions I can, I think healthy discussion is the way forward with raising awareness of these conditions!
I will go on my computer later but happy to still answer any questions I can, I think healthy discussion is the way forward with raising awareness of these conditions!
Original post by furryface12
I'm back, absolutely shattered and head's all over the place though so sorry f replies make no sense
Don't have anything concrete but temperature seems to affect people in different ways from what I can tell. A lot of people with PoTS seem to struggle with heat, I've not noticed it with NMH but got so much going on and I'd never heard of it until I was diagnosed a couple of months ago so that doesn't mean it doesn't! My temperature control in general is pretty rubbish though, and once I'm too hot/cold I can't warm up/cool down.
With the second bit, there is some crossover but the acronyms are for totally different names! I've had people think I had cystic fibrosis too when I've said CFS but with other conditions I have that's possibly more understandable.
Quiet one answered this better than me, I don't know of a link specifically but there do seem to be a fair number of people with both ME and fibro with parents that also have them, so a genetic link wouldn't surprise me.
Thanks for all the replies! I guess people that have or know someone who's had them are more likely to read the thread but hopefully raised a little bit of awareness
Don't have anything concrete but temperature seems to affect people in different ways from what I can tell. A lot of people with PoTS seem to struggle with heat, I've not noticed it with NMH but got so much going on and I'd never heard of it until I was diagnosed a couple of months ago so that doesn't mean it doesn't! My temperature control in general is pretty rubbish though, and once I'm too hot/cold I can't warm up/cool down.
With the second bit, there is some crossover but the acronyms are for totally different names! I've had people think I had cystic fibrosis too when I've said CFS but with other conditions I have that's possibly more understandable.
Quiet one answered this better than me, I don't know of a link specifically but there do seem to be a fair number of people with both ME and fibro with parents that also have them, so a genetic link wouldn't surprise me.
Thanks for all the replies! I guess people that have or know someone who's had them are more likely to read the thread but hopefully raised a little bit of awareness
Thanks and kudos to you starting this post. It highlights to those it's not just one layer to one condition. Judging from my own knock on effects from my ME to my now EDS & POTS diagnosis's it highlights the complications of post surgery, work stress n a relationship breakdown it can have an adverse affect on the body.
I thought about it all lately, symptoms have always been there, it's just progressively worse of late for various reasons..much of it of my control now. So hopefully raising awareness and communicating our strifes we can unite n support each other.
Posted from TSR Mobile
Original post by Quiet _One86
Thanks and kudos to you starting this post. It highlights to those it's not just one layer to one condition. Judging from my own knock on effects from my ME to my now EDS & POTS diagnosis's it highlights the complications of post surgery, work stress n a relationship breakdown it can have an adverse affect on the body.
I thought about it all lately, symptoms have always been there, it's just progressively worse of late for various reasons..much of it of my control now. So hopefully raising awareness and communicating our strifes we can unite n support each other.
Posted from TSR Mobile
I thought about it all lately, symptoms have always been there, it's just progressively worse of late for various reasons..much of it of my control now. So hopefully raising awareness and communicating our strifes we can unite n support each other.
Posted from TSR Mobile
Thanks! Yeah there are so many different elements to it. For me ME was followed by NMH, it's also made worse a lot of other health stuff going on before then. It's interesting how it's triggered in different people too- mine was post viral which I think is pretty common, it wasat a very stressful time too and I kept going through it which typical for me just made it all worse
But you're right, supporting each other and trying to raise awareness to others is about the best thing we can do for now, then hopefully one day science will catch up with us!Quick Reply
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