I'd be interested to know how many of you good people have been smokers or perhaps are still smoking.
I had to see a different doctor last week (my own being on holiday) due to the bad side effects of the Lyrica that my own doctor had prescribed for me after my educating him about EM as he heard never heard of it.
This new doctor must have had a good read of my notes as she was a long time calling me in and then proceeded to talk like an expert regarding EM and that it was my fault I had it because of my smoking history.
Now, the question is this, if smoking is the cause of EM and bearing in mind there are still millions of people out there puffing away on the evil weed, how come EM is so rare?
Surely I can't be the only one - which is why I am asking anyone who cares to reply to be honest about whether they ever smoked or still do.
I have a hard time believing this too, everyone smoked when I was growing. Almost my whole family, it was just something natural at that time. I did smoke myself for about ten years, I quit at age 26 hoping to spare myself and my family from the danger of lung cancer only to be diagnosed with it anyway at age 48. I already blame myself for the LC, I just can't believe the EM is a result of smoking too. I don't buy it.
I used to be a smoker too until about 12 years ago, I also agree that if it was smoking related then there would be far more people out there suffering from EM… How would something that was so widespread cause such a small amount of people to suffer…? I think that doctors are very quick to put anything down to smoking, being overweight or anything else that isn’t healthy as a way to scare us into living a healthier life.
My dad, a retired GP, says that the doctor didn't (or shouldn't) mean that "smoking gives you EM" but that if you have the slightest problem with your circulation, smoking is the worst thing you can do, so smoking is a factor in who gets EM and how severe it is. Some doctors are overly "smoking is the root of all evil" because they see so many patients quit and then start again. Don't waste time on blaming yourself tillyp, just use this as a way to stop yourself every smoking again.
I was put off ever starting by an incident in hospital when I was 14. I was strolling past a male patient bay when a man of about 50 called me over, asking if I had Raynaud's. When I said I did, he asked if I smoked. I said no. He replied, "Well don't ever start, or this will happen to you..." and pulled back his sheets.
My dad, a retired GP, says that the doctor didn't (or shouldn't) mean that "smoking gives you EM" but that if you have the slightest problem with your circulation, smoking is the worst thing you can do, so smoking is a factor in who gets EM and how severe it is. Some doctors are overly "smoking is the root of all evil" because they see so many patients quit and then start again. Don't waste time on blaming yourself tillyp, just use this as a way to stop yourself every smoking again.
I was put off ever starting by an incident in hospital when I was 14. I was strolling past a male patient bay when a man of about 50 called me over, asking if I had Raynaud's. When I said I did, he asked if I smoked. I said no. He replied, "Well don't ever start, or this will happen to you..." and pulled back his sheets.
Both his legs had been amputated.
It did work, I've never touched a cigarette!
I am only too aware of the dangers of smoking and certainly didn't need the lecture from the doctor - and that's what it was - as I am reaping the rewards of it now. The doctor wouldn't advise me about the Lyrica, which was the reason I was there, just said I would have to wait until my own GP came back from holiday. He is the head honcho and a Chest specialist as well who knows me pretty well. Maybe she was wary of treading on his territory.
Too late to beat myself up over smoking now, the damage is done. Still trying to quit though - it would help if my hubby didn't do it too.
Good luck with quitting tillyp, and don't beat yourself up about it.
I meant that the smoking-EM link shouldn't be seen as "if you smoke, you get EM", as you were all wondering why it would be so rare in that case. It should rather be seen as "if you have EM, smoking will make it worse", not in the sense of your needing to be told, rather in the sense of what you were discussing.
Of course you didn't need the doctor to lecture you. I'm sure you know all the dangers. I imagine that the doctor didn't actually have a clue about your EM and what to do with the Lyrica (she'd probably looked both of them up before you came in), but is the type who can't admit to ignorance, so you got read the riot act. I've had that kind of experience only too often. My dad used to train GPs and told me that if he'd been assessing a consultation like that, he would've given a very low mark and had a word with his student!
I know someone who quit heroin, and then a few years later stopped smoking. He said he found it harder to quit smoking as it is legal, openly done and every bit as addictive. It is very difficult to quit, it took my mum several attempts. I'm sure you have the motivation and will-power, you sound like a very determined person.
I found that being around smokers always made my EM worse, would that be any help with your motivation? With that in mind, would your husband be willing to quit too, in an effort to help your pain?
I hope you find some relief with the pain, please keep us posted!
Good luck with quitting tillyp, and don't beat yourself up about it.
I meant that the smoking-EM link shouldn't be seen as "if you smoke, you get EM", as you were all wondering why it would be so rare in that case. It should rather be seen as "if you have EM, smoking will make it worse", not in the sense of your needing to be told, rather in the sense of what you were discussing.
Of course you didn't need the doctor to lecture you. I'm sure you know all the dangers. I imagine that the doctor didn't actually have a clue about your EM and what to do with the Lyrica (she'd probably looked both of them up before you came in), but is the type who can't admit to ignorance, so you got read the riot act. I've had that kind of experience only too often. My dad used to train GPs and told me that if he'd been assessing a consultation like that, he would've given a very low mark and had a word with his student!
I know someone who quit heroin, and then a few years later stopped smoking. He said he found it harder to quit smoking as it is legal, openly done and every bit as addictive. It is very difficult to quit, it took my mum several attempts. I'm sure you have the motivation and will-power, you sound like a very determined person.
I found that being around smokers always made my EM worse, would that be any help with your motivation? With that in mind, would your husband be willing to quit too, in an effort to help your pain?
I hope you find some relief with the pain, please keep us posted!
I completely understood where you were coming from starsmurf and please don't think I had taken umbridge with your reply as it was not the case at all.
There are still a lot of doctors out there who don't actually listen to what is being said by the patient. Too busy filling out the prescription and going la la la I know best.
I have had 2 replies from (ex) smokers out of the 100 or more members on here. It would be interesting to know just how many others there are.
Sorry for delay in replying, Hubby in hospital for a few days - home this weekend I hope. Still don't know the cause of his problem (me probably)!! He used to work with asbestos years ago so let's not even go there. It is sooooo hot in the hospital I couldn't stay for long.
I'll be thinking of you and your husband tilly, I hope he's home soon. I will be praying that it is something simple that they can treat easily. I know what you mean about hospitals, total nightmare for us EM sufferers.
I would imagine that smoking is as common among those who get EM in adulthood as it is among any other group. I wonder if the slightly low figure is because many people here, including myself, developed it so young that we never started as it hurt too much! I'd be interested to see how many current and ex-smokers there are too, especially to see if nicotine replacement patches or gum have any effect on EM, so sufferers know if they can be used or not.
I have had the same nightmare with doctors, so many cannot admit to ignorance. They cannot ask the patient about their disease and will not accept anything the patient says. It's a return to the bad old days of "doctor knows best". That doctor can't have the excuse of being to busy and distracted to listen to you, she gave you a lecture. She also seems to have taken time beforehand to read your notes, so again, there is no excuse for her behaviour. I can only hope that you get better results with your normal doctor.
I'll be thinking of you and your husband tilly, I hope he's home soon. I will be praying that it is something simple that they can treat easily. I know what you mean about hospitals, total nightmare for us EM sufferers.
I would imagine that smoking is as common among those who get EM in adulthood as it is among any other group. I wonder if the slightly low figure is because many people here, including myself, developed it so young that we never started as it hurt too much! I'd be interested to see how many current and ex-smokers there are too, especially to see if nicotine replacement patches or gum have any effect on EM, so sufferers know if they can be used or not.
I have had the same nightmare with doctors, so many cannot admit to ignorance. They cannot ask the patient about their disease and will not accept anything the patient says. It's a return to the bad old days of "doctor knows best". That doctor can't have the excuse of being to busy and distracted to listen to you, she gave you a lecture. She also seems to have taken time beforehand to read your notes, so again, there is no excuse for her behaviour. I can only hope that you get better results with your normal doctor.
Good luck!
Thank you starsmurf. He came home this evening and is ok, a bit bruised and sore and hungry for a decent meal.
Your question re the nicotine replacement therapy is interesting. I have tried the patches many times but not since EM. They bring me out in red itchy lumps wherever I stick them. The sprays, gum etc don't do it for me either. The only way I will do it is cold turkey. I'm afraid I'm a bit like the doctors who don't listen - it's fingers in my ears and la la la!
What do you think of my profile picture? A fair representation of EM I thought.
I have never smoked, but it's still hard not to feel like I caused this condition in some way. I'm just curious what bad SE's you had from Lyrica, I haven't started on any oral meds yet, but I recently heard that Lyrica had better results that Neurontin. I'm just curious to hear your experience with this medication :)
Hi, I was a smoker up until January 9 2010 after smoking for over 20 years. I don't see there being much of a connection to smoking, like you say, EM would not be so rare
The Lyrica caused oedema in my legs and feet and the flares became more frequent. The escalation of flares may have been due to the progression of the EM. I also had difficulty in passing water and a very dry mouth so drinking lots and not being able to 'go' made the swelling even worse. Very painful to walk and when the heat of the flares caused blistering I was in more trouble as the blisters burst and wouldn't heal due to the swelling. Ulcers resulted and all in all I was pretty miserable.
I apologise for the delay in replying but the medication I am on (amiltriptiline) has slowed me down quite a bit and it takes me a while to get round to things. Still it is working in that I have hardly any EM symptoms now. The swelling is gone and the ulcers are all but healed.
Happy New Year
Melanie
Lau said:
I have never smoked, but it's still hard not to feel like I caused this condition in some way. I'm just curious what bad SE's you had from Lyrica, I haven't started on any oral meds yet, but I recently heard that Lyrica had better results that Neurontin. I'm just curious to hear your experience with this medication :)
Buerger’s Disease is caused by smoking, EM is not.
Hello Liz, Just looked up Buergers disease as I hadn't heard of it. Can you tell me why you say EM isn't caused by smoking as according to some doctors I have seen allmy problems are caused by my smoking.
So far I haven't had any replies from people who still smoke.
Hi, I was a smoker up until January 9 2010 after smoking for over 20 years. I don't see there being much of a connection to smoking, like you say, EM would not be so rare
Hello angel, congratulations on your giving up - do tell me how you did it as I am still succumbing to the evil weed. I've been puffing for 50 years and grew up when even the doctor would be smoking in his surgery during a consultation.
I have read every article on EM that I could find in the last 10 years, including a bunch I got from Dr Davis at the Mayo Clinic. I have never seen mention of smoking causing EM. Maybe the doctor you saw was not convinced that you had EM. Maybe suspected it could be Buergers or just wanted to scare you into quitting smoking.