Jump to content
Sclero Forums
Sign in to follow this  

Speaking of Dyspnea...

Recommended Posts

Hi all,


Haven't been around here much, mostly lurking and working the evening shift at work. I have noticed over the last year or so, I have almost no exercise tolerance. It's very scary and mainly depressing. I can't even walk a couple of blocks on flat ground without stopping.


The last PFT's showed "normal" but my body says NOT NORMAL. My heart beats hard and fast and I just have to stop. I'm only 53 :(...


Even when I get on my stationary bike I have to stop, the pain in my feet is immense.


I'm way overweight, 220 at 5'4" and my doctors say "Lose the weight and you'll feel better". Obviously that's true, but how to lose weight when I can't exercise? And the symptoms are not just weight related, I KNOW my body! Even walking from the parking lot to the building I work in is hard. Especially when I am carrying a heavy bag, then it's worse. Any suggestions for building exercise tolerance?


Each of my doctors looks at me through their specialty eyes, especially the cardiologist who says "just do it" like a coach, forgetting about the sclero, fibro, arthritis etc. What to do, what to do... :(



Share this post

Link to post
Share on other sites

Hi Karen,


Nice to hear from you again. How are you enjoying nursing?


Lose weight and you'll feel better. Sure~ OK, been there, done that, went home and had the temper tantrum. :temper-tantrum: My advice is to persist with the doctors, but go armed with a diary of activity, pain levels, when you feel your heart pounding and what you've been doing when it happens. You could also keep a food log alongside the other one - if you can demonstrate that you are eating healthy food in the appropriate portion sizes and NOT losing weight, you might get some practical assistance and taken a bit more seriously on the other problems. Doctors are so frustrating at times! :emoticon-bang-head:

Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

Share this post

Link to post
Share on other sites


It's so good to hear from you! However, I'm sorry to read about your breathing problems. There are so many things that can cause shortness of breath that it's hard to nail it down. Like you, I'm overweight for my size and my doctors keep telling me to lose weight. A couple of years ago my cardiologist actually started me on an exercise program at a rehab center. It was great! The technicians there helped me with a start up program and got me to a level that I'm comfortable with. The trick was to start off very, very slow. That was extremely hard from me since I use to be the one that everyone tried to keep up with, but it worked. My starting pace on the treadmill was 1.0 mile per hour!!! At first I could only do that for 10 minutes. Within 6 months I was up to 2.5 mph for 45 minutes 3 times a week. I did find that 45 minutes made my joints hurt at night, so now I just do 30 minutes 3 times a week and I have very little post-activity pain. On the other days, I do about 10 minutes on a stationary bike that I have at the house.


So I would suggest if your doctors want you to lose weight, then ask one of them to help you with an exercise program through a rehab facility. I didn't lose as much weight as they wanted me to, but at least I'm not gaining anymore and I can handle the day-to-day chores and activities SO MUCH better. I love Jeannie's idea of keeping a log of what you eat and such. If I did that it would be extremely convincing since I eat a third of what my husband eats and I gain weight!


Hope you feel better soon and please, don't be a stranger!

Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

Share this post

Link to post
Share on other sites

One thing I can recommend is to make sure you have updated labs on your general health, not just the scleroderma titers. Just because you have scleroderma doesn't mean that other, more common problems don't exist. For instance, I just had surgery for a parathyroid problem and it really helped with my weakness and fatigue. It was enough of an improvement that I can cope much better with the sclero issues.

Have you had the appropriate cardiograms to check for any heart issues?

Once your doctor clears you from anything that might cause a problem with exercise, then maybe you try to join low impact, gentle exercise program for older people. I know it sounds ridiculous but they are generally designed to spare joints and to fit with limited mobility and endurance.

If you can find a heat pool place for therapy, that would also allow you to exercise with less pain.

I hate exercise but it really has helped me. At one point I could only walk about 30 feet or so- I had also sorts of places to sit down one my way back to my house just so I could get there. Now I can frequently walk a couple of miles without real difficulty. Things can get better.

Good luck- I hope you find your own solution soon.

Share this post

Link to post
Share on other sites

Hello Karen


Yes, how to loose weight when you can't exercise! :emoticon-crying-kleenex: I am only about a stone (14lbs) maximum over weight but I am struggling to even loose that because I can't exercise! My inability to exercise is because of lack of mobility, fatigue and foot pain, it hurts as soon as I stand and just gets worse the longer I stand and the more I walk. Oh yes and moving the feet pulls the ulcers... :angry:


Mind you I can't complain I guess, shortness of breath is no longer the reason I can't do anything since having my pacemaker defibrillator put in. :emoticons-clap:


Take care.

Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

Share this post

Link to post
Share on other sites



Do you know the specific figure for a part of the PFT known as "diffusion"? This particular part of the test is used to determine if your lungs are absorbing as much oxygen as they should.


When I first noticed some shortness of breath, I was getting a great deal of exercise but noted that my wind wasn't what it should be. The first PFT did not include "diffusion", but only the lung capacities (gross capacity, speed of moving air, etc.). The figures were very high - 125% to 200%. Doctor told me that there was no problem. So on to the specialist, who told me that "supranormal" values can indicate disease (because the lungs are constantly stressed and tend to compensate when getting a lot of exercise.) Turned out I was right, and diffusion was 64% of expected. I wasn't absorbing the expected amount of oxygen.


The point is that it was very difficult to get a correct diagnosis, since lung capacities were very high. "Diffusion" was the key.


As others have mentioned, general testing for other causes might be wise. In particular, you may want try to get a Stress EKG.


Regarding weight control: Before I went through treatment for cancer (a very effective way to lose weight!) (lymphoma) eight years ago, it had always been a struggle to maintain ideal weight (I could easily manage three helpings and a big dessert...). But afterward, the problem reversed,as autoimmune disease/scleroderma got worse (now I often take food home from restaurants, since I can't get a large meal down). Now I have to work to keep my weight up (nutrition drinks, etc.). The inflammation/myalgia/fatigue state tends to eliminate appetite. Perhaps it's a male thing, since we seem to need to eat a lot more. In our local scleroderma support group, their is one other male (to about 20 females), and we are both thin and must work to keep our weight up, while about 60% of the women are overweight.


The most effective way for me to lose weight (back in the days when that was a concern) was to have a short fast. This seemed to reduce the cravings. However, I wouldn't recommend it without medical supervision.


Good luck,



Share this post

Link to post
Share on other sites

In answer to some of your questions; I've already had three heart attacks and three stents. Never heard about the "diffusion" issue but it makes a lot of sense. Will look into that. Thanks for the ideas and support everyone!

Share this post

Link to post
Share on other sites

Karen, Karen, Karen (and I say that with love.) That is just slightly important information to mention first of all, that you've had 3 heart attacks and 3 stents! You are not dealing with a normal situation and really need to be consulting with your cardiologist for an exercise program. Generally (in most countries and insurance plans) because of your history, you should be eligible for cardiac rehab, which is a special, well-supervised and individualized program where your heart and well-being is continually monitored while you very gradually increase your endurance.


My husband had pulmonary rehab last year, right after his lung transplant. He went 3 times a week and they very gradually increased his exercise program, which was mostly walking on a treadmill. Now when he exercises he uses an oximeter so that he doesn't let his sats fall too far. My guess is that you'd probably need to have an oximeter to know what is safe, or not, in your situation. It's very possible to be short of breath but have fine sats. When you are feeling short of breath, just slow down a bit, be less vigorous for a spell until it sorts itself out -- unless your cardiologist gives you a better rule of thumb.


Please check to see if you are eligible for a cardiac rehab program. You shouldn't have any worries about it, since they should keep your whole health history in mind while tailoring a program for you. It might be that you need to take a pain pill before exercising, or get better shoes or arch supports for the foot pain. Maybe you want to start with my "microwave" exercising program, which is to do something (even stretches count!) while waiting for the microwave instead of just standing there with a hypnotic stare, trying to help the food along.


I also set a timer for just a minute (to start) and then walk around the house. I very gradually worked up to the point where I can walk for five minutes in our house (if not dressed up) or in our condo hallway (when dressed). When I'm short of breath, I try not to stop entirely (because that's hard on the body to go to a dead stop) but just mosey a bit until things ease up. Very gradually, as my fitness improves, so does the heart pounding and shortness of breath.


Make sure you have new and well-fitted walking shoes every six months, because they wear out. I figure, being short of breath is a great reason for me to get in better condition, rather than an excuse to stay out of condition. The thing is, we just need to approach things very slowly, and increase much more gradually, than a "normal" healthy person and make our improvements in baby steps rather than big leaps and bounds. The most important thing of all is that we have a plan (any plan) and that it is realistic enough that we can do it every day. And be sure to give yourself a treat after every session. Even if you just walk 30 seconds, it is worth taking at minimum a five-minute break afterward to do whatever you want -- see hobby thread for that.


Also, don't discount the value of hobbies for helping increase fitness. I took up sewing for many reasons, but one is that it would force me to bend, stretch, use my hands, get out the ironing board, put things away -- all sorts of things that make my creaky and resistant joints get more motion than just sitting reading a book. I rejoice when these things are hard, because that means I am going against the grain and better off than I would be just giving in to the natural pull of gravity.


Let us know what you figure out for yourself, okay? Remember, we don't need to be running marathons. We just need to be doing a tiny bit more each day, and some day, it will add up to a health improvement!



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.

Share this post

Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

Sign in to follow this  

  • Create New...