Just wanted to update. Finally connected with my neuro, and he feels I should consult with a hematologist, as does my primary care doc.

[cmars]

So he has given me a name, and when I looked this doc up online, he looks like the right person for this job. Will call my primary care doc today so they can make the referral.

In the meantime, I just had a few questions.

Do you have trouble with exercise with aps? I was a runner for years - then started running distance in my late 40s and ran a marathon at 50. Now I am 58, and the running has been steadily going downhill (no pun intended here....actually the downhill is easier it's the uphill that is the killer) - now if I can run once every few weeks for 3 miles - that is good. I find that when I do that, I am wiped out for running for a while...I push for the run when I am feeling well, as I am fighting to maintain my base so I can run.....when I feel normal again???

But mostly, I am walking now for my aerobic workout. Miss my running.

Also began working with a trainer, as I felt myself getting very weak, tripping over nothing -- have been working on overall conditioning /strength for the past six months. Lately, this has been not too good - feel like I"m not getting enough air - shortness of breath , lightheaded - all this seems worse, but workouts have not changed.

Can anyone share their experiences with aps and exercise? How does it affect your body?

And....can this sluggish feeling that I experience so often - like my body just doesn't want to wake up....sound like it could be related.

Thanks in advance and I hope you all have a wonderful day. I am so appreciative of finding this site as I proceed through my journey of health.

[cmars]

Thanks for your response. I have tried adderall in the past for the fatigue, and found it just made me a bit wired....but still fatigued. Will look into this.

[MaryF Administrator]

Hi there, it sounds like things are really being slotted into place for you. I try hard to exercise.. I find I have to pace myself in ten minutes, or sometimes 15 minute bursts and also have to rest afterwards. I have diabiolical fatigue, like many on here. I have overlapping - 5 conditions, and I can't take Plaquenil... but my daughter does, and as above - it takes weeks and months to work but does in the majority of cases, has significantly helped my young teenage daughter! Mary F x

[cmars]

Thank you for your response Mary. I have never heard of "diabiolical fatigue" but it doesn't sound good. I know that when you have one autoimmune disease, there are sometimes others that crop up as well. My neuro thinks this may be the case with what is going on with me now.... Hope you are well.

Carol

[MaryF Administrator in reply to cmars]

Hi there, not a medical term, just my irritation of it personally! Mary F x

[cmars in reply to MaryF]

Great descriptor.....it's pretty clear what it means. Docs should know this one and have great respect for it!

Carol

[Hidden]

Hi cmars,

I have pullmonary arterial hypertension (PAH). The doctors always ask me if I have shortness of breath.. I do not have that. But I am 68 and take walks as exercise. Perhaps you should ask to have an Ecchocardiograpy .PAH goes sometimes with APS.

Just a thought. Kerstin.

[cmars in reply to Hidden]

Thank you Kerstin. My neuro wants me to discuss the shortness of breath with my internist. He was a bit concerned as well.

I will look into this problem.

Thanks again and have a great day.

CArol

[Herb]

Good that you are able to do the exercise, running and so on.

Is the trainer you mention a person who knows about your condition? This could be important as someone who knew nothing about your condition could push you too hard.

Its possible the tiredness could be related to the condition. Tell the doctors and get them to check your blood for anything which could cause it. Sometimes the condition can also lead to things such as anemia, which can be fixed.