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Giving up smoking


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#1 dimarzio

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Posted 02 February 2016 - 08:45 AM

I need to give up because it's making the Raynaud's much worse and I think is also contributing to my feeling faint.  The problem is that systemic sclerosis is stressing me so much it's making giving up so hard.

 

I've cut down from 20 per day to 15 per day to 10 per day and am now down to 7 or 8.  I gave up for 3 months in the summer (when I was less stressed) and my GP and Psychiatrist both told me that stopping smoking was adding to my stress and the cause of my insomnia, so I started again.  That was a month or so before systemic sclerosis was diagnosed (what a load of bad advice from my GP and Psychiatrist).  Of course they didn't say to start again but that's what they seemed to be inferring (my insomnia remained by the way - so they were wrong, though I'm sure their intent was good).

 

I've given up several times over the years trying cold turkey and nicotine replacements.  Unfortunately the nicotine gum is no good now because of my esophagus problems, but I just can't seem to quit.  It was hard enough without the stress of this disease, but even harder with it.

 

I also have the feeling that giving up might just be prolonging the agony - is 5 years of this horrible debilitating disease better than 2?

 

Are there any other smokers with this disease or those who have managed to quit?

 

Rheumatologist says I have "late-onset" systemic sclerosis - is the prognosis any different for that type?



#2 Joelf

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Posted 03 February 2016 - 07:06 AM

Hi Dimarzio,

 

Well, certainly giving up smoking if you possibly can would be a great advantage; not only for scleroderma, but for every other aspect of your health. Easier said than done, I would imagine (having never smoked myself).

 

Whenever I've been to The Royal Brompton Hospital to see my lung consultant, I'm always horrified at the group of "inmates" standing outside with a cigarette in one hand and an oxygen cylinder in the other. We have a thread here about the dangers and difficulties of giving up smoking and also a great success story from one of our members, who managed to quit.

 

The prognosis for this disease varies from patient to patient, depending on the type of organ involvement. However, despite having lung involvement, I fully intend to live for a long time (barring my being run over by a bus, or some such accident) if only to get my money's worth out of my pensions!! :wink:


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#3 dimarzio

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Posted 04 February 2016 - 07:33 AM

Thanks for the links Jo - you look too young to be thinking about pensions (unless you are using an old photo).

 

Did you know that there are a few companies that will give you an enhanced pension if you have certain illnesses, so don't just take what your pension provider offers you.

 

Nicotine is a terrible addiction to quit, especially for someone who has smoked for 35 years - I'm finding it hard because of the boredom - I'm just getting bored because the faintness and Raynaud's seem to be stopping me doing very much.  I've quit several times over the years - managed 12 months once, but it is so much easier when you have an active healthy life - keeping busy helps take your mind off of it.

 

That said, I've only had 3 today, so hopefully I can taper it down - can't manage cold turkey at the moment.  Trouble is that it only takes a little bit of stress to make me reach for the packet - one of the most stressful things is that I keep lurching from being very hot to very cold and cant keep an even temperature - I think it may be my immune system causing the wild temperature swings.

 

Been a mild sunny day today and even managed to wash the car for the first time in 5 months - hands got really cold though even with rubber gloves - it felt like a major success though.



#4 VTDMSCL

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Posted 04 February 2016 - 02:10 PM

Hello dimarzio,

You are correct about the fact nicotine is a terrible addiction! I myself was a smoker and had smoked for 32 years. I tried to quit numerous times myself over the years. I even had a lung cancer scare in which they removed half my right upper lobe as well as many lymph nodes thinking it was cancer. Thankfully, and gratefully it turned out not to be cancer, but was a rare form of infection that presented like cancer.
After that surgery I quit for approx a month. I was in a stressful living condition in which made it even more challenging to quit. So I started back up again.
 

It wasn't until 4 years after that surgery, that I FINALLY quit! Your right, it is the hardest thing you will ever do, BUT it IS Do-able. I used the nicotine patch which for me, it took the edge off. The biggest thing to being able for me to actually quit, was I HAD to WANT to. That is why it is so difficult. I knew I NEEDED to, given the condition of my lungs, and my health, but knowing that STILL made it such a struggle.

For me to quit, I had to get angry at the cigarette. I know that sounds ridiculous, but I mean it in the sense of how could I have let something that small (meaning the cigarette) take control over my health, take control over my time, and my life? How did I allow myself to become so addicted to something so damaging to ME?
Once I entered that mind set, and truly WANTED to quit, I started the process.
I won't lie to you, it wasn't easy, I used the patch as I said, to take the edge off from the withdrawal symptoms. It did not totally take away that urge to want to smoke, but my will power had gotten bigger than the urge. Honestly, there were days I could have eaten a cigarette! But I wouldn't cave in to it.

I have now been smoke free for the last 5 years! It was the best thing I could have ever done for my self. :~)

You CAN do this!! Believe it! :~)
Best of luck to you!

 



#5 dimarzio

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Posted 05 February 2016 - 07:19 AM

Yesterday was a fine day and I could go outdoors. Managed to restrict to 4 yesterday, but today it's wet and windy and I'm stuck indoors getting bored so I'm struggling today. Worst still the next few days are forecast to be dire, so I'm stuck indoors again and will no doubt reach for the packet again.

It's so much easier to cut down when the weather is fine and I can get out and do things. Miserable days and I can't do much - my eyes can only cope with a few minutes on the computer and I can't concentrate on the TV or radio.

I have to see the endocrinologist next week because my pituitary hormones are too high, then have to have tubes stuck down my esopeagus at the end of the month.

#6 Shelley Ensz

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Posted 05 February 2016 - 12:01 PM

Hi Dimarzio,

 

Here is a link to WhyQuit which covers the topic of smoking cessation forums, and will help you find the level of information and support that you need/want for quitting smoking. For the majority of us, it is really not a do-it-yourself job.

 

I quit unsuccessfully over 200 times, with patches and programs and iron resolve. I threw out packs and cartons. I made lists of reasons to quit. I quit for a few days or weeks or months at a time. But I did not succeed until I understood the one big addicting lie that I was telling myself.  I kept on thinking, oh, just one puff!  Just one puff will put me out of my misery. I won't start again, I will just have one puff. I won't smoke the whole cigarette, I'll just have one puff 

 

I imagine that might be the lie that supports nearly any addiction...."Just one!" How could "just one" possibly hurt me? Just a LITTLE BIT?

 

It's the sheer tomfoolery of imagining that we have any control at all over any addictive behavior. We do not. We never will. Some of us are simply addicted, to whatever, and the sure-fire sign of it is when we begin telling ourselves we'll only have one...one puff, one cigarette, one sip, one drink, one pill, one game of chance, one of whatever we know we no longer have control over.

 

Once I got it through my thick skull that "just one puff" was what brought me back into my nicotine addiction every time, or the very lame excuse of "stress" which is a self-devised thinking strategy for continuing to enable our own bad habits, then I finally got it.

 

I simply accepted that I was powerless over nicotine, and that I always would be. I love it. It's my best friend! It smells great. It's a refreshing habit. It calms me down. It's there 24 hours a day. It's so cheap compared to other bad habits. It's fun to blow smoke rings! It's the perfect start and finish to a perfect day. Health, ah bah humbug, I'm already sicker than a dog, what difference can it make? In fact, it can help me cope with the stress of being sick!

 

Today, I still believe all that. I still love the smell of smoke. I didn't mind the damage it caused me in the least. I still think of it as being my former best friend. I don't mind any of the time and energy I devoted to it. I actually remember it quite fondly, and never fight against those fond memories, either. It's just that it hardly ever even crosses my mind anymore, not even when I am around other smokers. And I can smile when I think of it, but have no urge at all to go back to being imprisoned by its constant lure.

 

Because I realized that I would always be a sucker for the "just one puff" lure of addiction. I did not quit smoking. The only thing I ever did was delay that "next puff". I will always be a smoker, in my heart, and if I were to start up again, I am sure I'd be quite a chimney!

 

Once things clicked for me, I quit trying to find a reason and I quit trying to find excuses. I promised myself that if I didn't have a single puff for three weeks, then I would adopt a cat from a kill shelter. Then every time I thought of having a puff, I thought how awful it would be that an innocent cat would have to die just because I was so selfish and had to have a puff!

 

Anyway, you'll get a zillion ideas at the WhyQuit site. Find the proper venue for your goals and wishes and dreams regarding nicotine, or a life of breathing freely and, eventually, without a care in the world for that "next puff". IF that's what you really want.

 

:hug-group:


Warm Hugs,

Shelley Ensz
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International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#7 dimarzio

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Posted 06 February 2016 - 12:57 AM

The trouble is that I've had to quit alcohol and caffeine and I've also had to quit most of the foods I like due to chewing and digestive problems, so I don't have many pleasures left.

 

Smoking is the only guilty pleasure I have.  I'm hoping that the more I cut down, the easier it will make it to finally quit - certainly easier in the warmer weather when I can keep more occupied.

 

As I said earlier, I have failed before with nicotine patches but did succeed for 12 months with gum - I can't use gum now though because of esopheagul problems.

 

I did quit cold turkey last May, but at that point the systemic sclerosis was fairly mild - since then it has really attacked with a vengeance.

 

Since there is a 1 in 10,000 chance of getting this disease and 6 out of 7 are female, that means a man has a 1 in 70,000 chance if my maths is right. To me that's very high odds against contracting this naturally.



#8 dimarzio

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Posted 06 February 2016 - 02:08 AM

I also meant to ask whether the prognosis and/or severity tends to differ between early and late onset Scleroderma. My Rheumatologist was quite specific in saying that mine was late-onset.

#9 Joelf

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Posted 06 February 2016 - 08:53 AM

Hi Dimarzio,

 

I've found you an article on Early- versus late-onset systemic sclerosis: differences in clinical presentation and outcome, which I will be adding to the website. It appears from this article that the standardized mortality ratio was shown to be higher in younger patients and the early-onset group had a higher prevalence of esophageal involvement, whereas late-onset SSc was characterized by a lower prevalence of digital ulcers but higher rates of heart conduction system abnormalities.

 

Kind regards,


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#10 dimarzio

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Posted 07 February 2016 - 02:16 AM

Interesting article Jo.  Of course none of us really know how long we've had this disease. I have had hip and back pain for many years and put it down to normal aging. I've had cold hands for 5 years but just put it down to getting older.  None of these had a huge effect on my life, but we don't really know until it gets bad and we have the appropriate tests and examinations.

 

I really don't know whether I've had it mildly for 5 years or 18 months.  All I do know is that my life was normal until Jan 2015 when I was struck down with chronic insomnia and a constant feeling of faintness.  I was also getting cold feet but everyone put it down to anxiety (though I knew something worse was going on with my body).  The Raynauds and small patches of thick skin did not arrive until July/Aug 2015 when follow up blood tests for Raynauds identified Systemic Sclerosis as the cause.

 

It would be interesting to hear other peoples views on how long they may have had the disease prior to diagnosis, though there don't seem to be many people commenting on this board - I wonder if I would get more comments posting on the main board.

 

Jo, how old were you when you started getting symptoms?  How long was it before you were diagnosed and how long have you lived with it since diagnosis?  I would be interested in how it affects your life and how you overcome the many obstacles it presents - if you have the time to reply.



#11 Joelf

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Posted 07 February 2016 - 10:12 AM

Hi Dimarzio,

 

I was diagnosed with scleroderma in 2009 when I was 57, so have had it for the last six and a half years, but I did feel very poorly for at least eighteen months before that. I had Raynaud's and carpal tunnel syndrome, but thought nothing of it (as many people do have these problems and don't develop scleroderma). I just felt generally off colour and tired, very unlike my normal self and probably would have struggled on for ages, but fortunately (or unfortunately, depending on your point of view) I developed the classic lung problems of a dry, unproductive cough, shortage of breath and so went to my doctor, who thankfully sent me to a lung consultant, who referred me to The Royal Brompton Hospital and the rest, as they say, is history.

 

Thankfully, the lung fibrosis was caught early and I was extremely fit at the time, so noticed quickly that my breathing was not as it should be and so the treatment I received was very successful.  If you click on my name signature, it will take you to my volunteer profile page, which gives a few more details.

 

Obviously, it has affected me, as sadly I'm not as fit as I was. Because I have to take steroids, it's affected my hips and I've had one total replacement and there's likely to be another on the cards. However, the really big bonus is that I've met some really super people, whom I would never have known if I hadn't developed scleroderma; I was a complete Luddite until Shelley dragged me kicking and screaming into the 21st century to become an Admin and webmaster on the site and actually my life has really been enriched by this. You see, there's always a positive slant to everything! :wink:

 

I've included a link for you to our Patient and Caregiver Stories, which feature over 1,000 patient, caregiver and survivor stories about scleroderma and/or autoimmune symptoms or diseases and which I hope you'll find interesting.


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#12 dimarzio

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Posted 07 February 2016 - 11:46 AM

Jo, I'm 57 and diagnosed at 57 too. Could you explain why you take steroids, how they help and the side effects. I know people with this disease take steroids but unsure of the pros and cons or at what point they are prescribed.

I've been getting a twang in my right wrist and keep needing to stretch it. If I don't, it tightens up and I get an effect like an electric shock through my hand. I immediately thought it was the onset of Carpel Tunnel, but the Rheumatologist said it wasn't (not sure how he could be so sure though).

Other than walking the dogs' how much and what kind of exercise do you get - Any tips? All I'm managing at the moment is a bit of walking, but the pain and the cold are taking any real enjoyment out of it. I'm finding it quite uncomfortable to sit and keep needing to move from seat to seat and keep changing positions so I don't get too stiff.

I'm getting very bored due to my limited activity, but am trying to do as much as I can.

I've had a quick look at the Patient and Caregiver Stories and will read a bit more later.

I'm concerned that my hips might be necrosis too, but it could be ligaments/tendons or something else - they've really got quite bad in the last 3 months. Are you able to sleep on your side or is that to painful? Do you have any of the esopheagul and stomach symptoms?

#13 Joelf

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Posted 08 February 2016 - 09:16 AM

Hi Dimarzio,

 

The reason I take steroids was because I was prescribed them by my consultants, along with an immunosuppressant and various other medications to counter the effect of the drugs I have to take. Steroids are an effective anti inflammatory and they certainly improved the inflammation on my lungs, after my initial treatment. However, we do have a  Glucocorticoids, Steroids (Prednisone) Warnings for Scleroderma, which I included in my last post; I've repeated it again, as it is very important.

 

When I took them I was amazed at the difference they made to me and in the beginning I was swinging off the chandeliers on them......but.....and it is a large but .....having been on them for six and a half years, I'm now suffering with all the classic side effects, weight gain, paper thin skin and worst of all, avascular necrosis. So I'm not nearly so ecstatic about them as I was and in fact am in the process of reducing them right down with a view to coming off them completely (it has to be done very gradually).

 

As far as the exercise goes, I've always been physically very active and in fact, that's what saved me in the beginning, because I was so fit and noticed very quickly that my breathing was not as it should be. I still go to the gym, three to four times a week if I can, but my regime has been strictly curtailed now, mainly because of my hips. When I had my horses I used to ride regularly, but I haven't anything to ride at present and to be honest, I'm much more chary these days about what I get on (I don't bounce like I used to and the last thing I need now is an over exuberant thoroughbred dumping me on the deck!)

 

I understand that swimming is quite a good exercise, as it is very low impact and doesn't put any strain on stiff joints, so you could perhaps try that? I'm no swimmer and in fact don't like it at all. I have no confidence in the water and don't like swimming out of my depth; if I were in a situation (unlikely) when I was drowning, I could possibly swim to save myself, but wouldn't do it out of choice. One of the gym instructors suggests that the best exercise to do is one that you find enjoyable, or you won't do it!  

 

So all in all, I consider myself to be very fortunate; I don't have any gut involvement and my lungs have improved and stablised (so much so that my lung consultant has said they could pull the average person off the street with worse lung function tests than me!) I could certainly be a jolly sight worse than I am.

 

I would advise you not to worry about every symptom turning into a scleroderma complication. You could have carpal tunnel syndrome, or avascular necrosis or any of the other things you fear, but equally you could not and it really is pointless worrying and speculating about them; the best thing if you are worried is to consult a scleroderma expert, as the worry and fear about your symptoms could certainly exacerbate autoimmune problems; that much is certain!    


Jo Frowde
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#14 dimarzio

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Posted 09 February 2016 - 04:18 AM

Thanks Jo, it's the inactivity that's driving me insane.  I've been out walking for 2 hours today, but it's been a nice day.  Problem is that when I get home I seem to stiffen up again very quickly.  Walking loosens everything up, but the stiffness then sets back in.  It's as if I need to keep on the move every hour of the day.

 

If I sit and watch TV, I have to constantly keep changing posture and position otherwise my joints and ligaments seem to seize so quickly.

 

I dare not chance swimming with my Raynaud's being so severe.



#15 Shelley Ensz

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Posted 09 February 2016 - 10:17 AM

Hi Dimarzio,

 

For arthritis, as you might have figured out by now, they recommend not staying too long in any one position. Frequent gentle movement is a good idea to not stiffen up. For example, doing stretches or walking around during commercials.

 

I'm able to swim just fine, in warmer pools. Many neighborhoods have warm pools, and even warm pool exercise classes, specifically for people with arthritis. The gentle exercise in water is absolutely superb for tender joints and muscles. In fact, the only time I can say that I'm entirely pain free is when I am floating in a warm pool.  I love to just float, even to the point where I've fallen asleep!

 

Even if you can't find a warm pool or it doesn't trip your trigger, try just imagining that you are floating in a warm pool, and feel the relaxation seep through your bones and muscles. Ah, delightful!

 

:hug-group:


Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.