Author Topic: Exercise and Sleep, Fatigue, Joint Pain  (Read 1760 times)

jordozmom

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Exercise and Sleep, Fatigue, Joint Pain
« on: December 17, 2009, 02:53:03 PM »
I used to exercise reguarly when I was younger, then was diagnosed with Sjogrens and have struggled ever since.  I've kind of thought that my days of exercise were over with this disease.  I mean, how the heck could I exercise when I can barely make it through a work day or when a trip to the mall could have me in bed for days!!!!  The times I have exercised since my dx I've usually thrown myself into a flare (mostly because I get crazy and start pushing myself too hard).  The doc tells me to exercise and lose some of this weight (45 lbs - which I blame on Sjogrens fatigue, muscle weakening from my days on Plaquenil, and the lexapro for the anxiety I suffer from this disease), but the walking he suggested just doesn't do anything for me.  Well lately I've had a terrible time with joint pain and I don't sleep for crap, but after my friend convinced me to take a cardiokickboxing class I've noticed that on the nights I have the class I sleep much better and the next morning I feel great, and the nights in between the classes I can't sleep for nothing and I struggle getting out of bed the next morning.  I feel like the exercise is helping my sleep and my joints, but then I'm afraid that I'll go into a flare.  Does anyone here exercise regularly?  And if so, what kind of exercise do you do?  Does anyone find a reduction in their fatigue, joint pain and notice a better night's sleep after they have exercised?
SJS, Raynauds, Distal Renal Tubular Acidosis, RA symptoms, peripheral neuropathy symptoms
Plaquenil, Salagen, Sodium Bicarb, Klor-Con, Ambien, Methotrexate, COQ-10, VitD, Multivitamin, Omega 3, B12

dunhams

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Re: Exercise and Sleep, Fatigue, Joint Pain
« Reply #1 on: December 17, 2009, 05:30:10 PM »
Yes I do. My PT lets me use his machines &  I only use 5 lbs. I ride the bike for 5 min. , do crunches all this in 20 min. 3 times a week. I take Ultrum in the morning for pain & that also helps my energy. On the sleep, I find if I don't eat diner so late, I sleep better. I like to eat a banana right before I go to bed. On Mon. nite I go to a class that is held outside & modify it since I'm 66. I've been on a diet like Weight Watcher, low fat high fiber & I've lost 13 lbs. I feel much better. I work 4 hrs a day when school is in. I like staying busy so I don't think about my Sjogrens. Hope this helps.

Babs659

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Re: Exercise and Sleep, Fatigue, Joint Pain
« Reply #2 on: December 17, 2009, 06:20:18 PM »
I used to run marathons, and averaged 20-30 miles a week.  Due mostly to fatigue and the "woozies" I have had to drastically cut back.  I still try to run, walk and swim.  It's a fine line between staying active and overdoing it.  I think it's important to exercise, because my joints feel worse when I don't.

Everyone must find their comfort level.
Good luck :)
52 year old female with Sjs, Hashimoto's, hypertension, osteopenia, rosacea, Raynaud's, GERD, ANA homogenous 1:1280.  Plaquenil, Synthroid, Evoxac, Aciphex, Quinipril, Vit D.

Heather

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Re: Exercise and Sleep, Fatigue, Joint Pain
« Reply #3 on: December 18, 2009, 07:35:00 AM »
I exercise 3 x a week. The doctor advised me to maintain my fitness. Once a week I guided sport and other times I exercise at home.
Although I'm tired and have muscle pain I try to persist . And often I feel better afterwards. The fatigue after exercise feels better than the fatigue of nothing.
Maybe it helps also because you feel you even do something against the illness.
« Last Edit: December 19, 2009, 01:51:36 AM by Heather »
Female, 50, Sjögrens, IBS, Plaquenil, Vidisec carbogel, Sumatriptan, Diazepam, Pariet

inga

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Re: Exercise and Sleep, Fatigue, Joint Pain
« Reply #4 on: December 18, 2009, 07:42:56 AM »
I was an age class competitive athelte until age 50.  I can only walk right now. I can't exercise after noon or it keeps me up all night and I get horrible restless leg.  Perhaps you may find a less jarring exercise like swimming or cycling keeps you from flaring up.  If I overdo, 36 hours later, I get very sick.  After many years, I have learned, I can't do what I used to do.  That doesn't mean I can't do anything.  I just have to adjust.  Pace yourself.

wen.uk

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Re: Exercise and Sleep, Fatigue, Joint Pain
« Reply #5 on: December 18, 2009, 07:49:38 AM »
This post is really interesting as I'm determined to start exercising again, I used to be a real gym bunny doing cardio and weights 3 times a week for about  an hour and a half each session, was also a keen dancer but as the SjS began to take hold all this dwindled.  For the past couple of years all I've done is some regular walking as at times it is more than I can manage to keep working and running my home.

Recently though I've had a further dx of quite advanced osteoporosis so it is really important for me to do some weight bearing exercise to help promote bone growth.  So far I've started doing some really light stretching exercises with the physio and it is my hope to increase this slowly and gently over time and even to get back to the gym, even if it is only for short sessions.  At least I'll feel I'm doing something.  The worry of the horiffic fatigue is always there, so I'll definitely be working at my own personal pace rather than anyone elses. but I won't know until I try.  Let's all support each other on this one, swap tips, and see what works.

Love Wen x

jordozmom

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Re: Exercise and Sleep, Fatigue, Joint Pain
« Reply #6 on: December 18, 2009, 10:46:27 AM »
This post is really interesting as I'm determined to start exercising again, I used to be a real gym bunny doing cardio and weights 3 times a week for about  an hour and a half each session, was also a keen dancer but as the SjS began to take hold all this dwindled.  For the past couple of years all I've done is some regular walking as at times it is more than I can manage to keep working and running my home.

Recently though I've had a further dx of quite advanced osteoporosis so it is really important for me to do some weight bearing exercise to help promote bone growth.  So far I've started doing some really light stretching exercises with the physio and it is my hope to increase this slowly and gently over time and even to get back to the gym, even if it is only for short sessions.  At least I'll feel I'm doing something.  The worry of the horiffic fatigue is always there, so I'll definitely be working at my own personal pace rather than anyone elses. but I won't know until I try.  Let's all support each other on this one, swap tips, and see what works.

Love Wen x

Hey Wen - sounds like we are in the same boat.  It is difficult to make it through work each day and take care of my son and my home in the evening, none the less make time or have energy for exercise.  I was the same way - I used to hit the gym 6 days a week alternating between the machines and step aerobic classes and toning classes, then when I became pregnant I did aerobic exercise at home 6 days a week up until I was 8.5 months pregnant (had pre-term labor and had to stop).  So getting zero exercise is very hard for me.  Not only do I feel lousy with this disease, but I'm also not used to feeling flabby and jiggly and weak.  And I do walk at times, too.  Sometimes it is easier because I can just quick go for a walk vs. having to pack up to go to the gym.  I am SO SORRY about your recent dx of osteoporosis - is that tied to SJS in any way?  Do you take calcium? Just what you need in addition to SJS.  You take care!!!
SJS, Raynauds, Distal Renal Tubular Acidosis, RA symptoms, peripheral neuropathy symptoms
Plaquenil, Salagen, Sodium Bicarb, Klor-Con, Ambien, Methotrexate, COQ-10, VitD, Multivitamin, Omega 3, B12

Gail

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Re: Exercise and Sleep, Fatigue, Joint Pain
« Reply #7 on: December 18, 2009, 10:11:17 PM »
Hi,

I started back exercising in October. I started walking. I was so weak that I did not know if I could do it, but I decided to try anyway. I was weak and lightheaded but pushed myself to walk like half mile. I did it and prayed that I am not going to fall. Well, little by little my body got used to walk half mile, then about in November, I started walking a mile, and now I sometimes walk one and a half mile. I am not running or anything, just walking. Sometimes I do get panicky and dizzy, but I care a bottle of water with me and I do not walk too fast, just average.

A few weeks ago I started taking Lexapro just to see if it would help my depression, and I took it for 2 weeks. This pill made me feel weak, dizzy, weird. I was on the good start, and after I started that medicine, I am back to my dizzy life again and weaker than before too. I stopped taking Lexapro, but the brain altering effects are still there. I prefer to be depressed than Zombi-like. I do not like to feel that way. My skin started itching and burning too. Hate that drug!!!

I also started PT, twice a week. I noticed if I push myself too hard, I am going to hurt the next day. I do it gradually, but never like I used to do it. Just listen to your body. You can do it slowly, but 2-3 days a week. That way you are not going to be in pain and your body will ajust.

For the first time I went to the gym, I was like Yea, let's go, girl! But I was in bed for the next 2 days after that. So, I take it easier now. Try PT, they will show you some exercises to improve your muscle strengh. Find a good PT!

I used to go to the gym 3-4 times a week and did it religiously, but there is now way I can do the same routine again. I feel bad about it, but at least I can do what I do.

Listen to your body!

Take care,

Gail.

Calli66

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Re: Exercise and Sleep, Fatigue, Joint Pain
« Reply #8 on: December 18, 2009, 10:22:46 PM »
I started Jazzercise last May, and at first I only went to the half hour class once or twice a week. Now I am going to the hour long class 3 times a week. It has really helped my stamina, and my flexibility, especially in my shoulders. And my spirits are UP. I even had a dream one night that I was dancing ---going up to the top of a hill!

It has really been a good thing for me.

Calli

inga

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Re: Exercise and Sleep, Fatigue, Joint Pain
« Reply #9 on: December 19, 2009, 12:21:33 PM »
I am where you are Gail.  I can go several miles, but have that dizziness too, do to autonomic neuropathy.  I got a treadmill because it is way too cold outside right now, not unusual to be below 10 degrees at this time.   I do not like walking on the treadmill, but have been doing it.

Dysautonomia is disabling, but the only option is to fight it like you are.  Keep it up.

Gail

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Re: Exercise and Sleep, Fatigue, Joint Pain
« Reply #10 on: December 19, 2009, 05:40:54 PM »
Hi, Inga,

I do not have any diagnosis yet. I do not know if I got the neuropathy or not. I think my symptoms have a lot to do with neurological matter. I went to a different neurologist this past week, and he told me that all my reflexes are there. Exept in my legs not as abvious than in my arms. I will have the nerve conduction tests after the New Year.

Right now all I can do is to exercise gently and eat right. I cannot take any meds that they proscribe me. It makes me worse. Fatigue and pain are worse with meds for me.

Gail.


inga

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Re: Exercise and Sleep, Fatigue, Joint Pain
« Reply #11 on: December 19, 2009, 07:30:48 PM »
All my EMGs were normal.  If not for the epidermal nerve fiber biopsy, and autonomic battery, I would never have known I had such bad neuropathy.  It is small fiber, autonomic and sensory.  I highly recommend a skin biopsy for neuropathy.

Keep up the good work.

Babs659

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Re: Exercise and Sleep, Fatigue, Joint Pain
« Reply #12 on: December 20, 2009, 06:44:22 AM »
Inga, can you tell me more about dysautonomia and why a diagnosis is important?  Do they prescribe a certain drug?
52 year old female with Sjs, Hashimoto's, hypertension, osteopenia, rosacea, Raynaud's, GERD, ANA homogenous 1:1280.  Plaquenil, Synthroid, Evoxac, Aciphex, Quinipril, Vit D.

inga

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Re: Exercise and Sleep, Fatigue, Joint Pain
« Reply #13 on: December 20, 2009, 09:15:08 AM »
Dysautonomia is a general description for body wide malfunction.  Symptoms are hypotension, resulting in lightheadedness, dizziness, shortness of breath, jheadache that is situated in the back of the head and 'coat hanger' area, exercise intolerance, etc.
Other issues are sweating abnormalities, often anhidrosis, but it can go either way,  gastric symptoms, esophageal malfunction, constipation, diarrhea etc.  Sleep is affected.  Dry eyes, dry mouth are caused by neural dysfunction, not necessarily gland destruction, but biopsies will show lymphocytes.  Seronegative SSA, SSB, + labial gland biopsy Sjogren's suffers will frequently present with worse neuropathy than seropositive SSA,SSB.  It is crazy.

 They have yet to identify which antibody does this in seronegative SSA, SSB patients who have + ANA and + lip biopsy.  There may be several, and highly individual.

 People with + lip biopsy and complete seronegativity may at a later time seroconvert.  It may be worth an epidermal skin fiber biopsy if you have autonomic symptoms.  These skin biopsies are done at research hospitals.  The other diagnostic tests are autonomic tests, such as tilt table, thermoregulatory sweat test, QSARTS, R-R breathing, etc.  You need to seek out a research center with an autonomic lab.

All autoimmune disease can cause a degree of peripheral neuropathy of the small fiber variety.  It is this small fiber neuropathy which incites all these symptoms.  (And we look like hypochondriacs, becuase so many organ systems are affected.)  In addition most people with autonomic neuropathy also have sensory neuropathy.
 
 Lupus, SjS and SSC all are associated with PN.  PN can also be free standing.  But it is important if one gets a diagnosis of PN to try to find causation, since causes can sometimes be treated.

The condition can be mild to devastating.  Dysautonomia or its slightly worse variant, autonomic neuropathy causes a huge number of symptoms.  That accounts for the wide and often difficult to describe symptoms of people who have this condition.

It is often caused by malfunction of the small fiber nerves.  Sjogren's can come with peripheral neuropathy, and it is not just the burning feet people are familiar with, it is also the entire body, becuase small fibers innervate all our bodily functions.  Medications can help symptoms, but there is really no known cure.   Drinking water if you feel faint is one intervention.   Your neurologist can give you more information on interventions. Because some people have kidney disease, I don't want to recommend anything, because kidney issues change things.  Talk to your doctor.

Here is a site that gives some information.

http://ndrf.org/  The National Dysautonomia Research Foundation.

inga

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Re: Exercise and Sleep, Fatigue, Joint Pain
« Reply #14 on: December 20, 2009, 09:16:58 AM »
Pardon my typing errors.  Fingers don't work like they used to. :-[