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Wackers34
Veteran Member


Date Joined Apr 2013
Total Posts : 694
   Posted 7/25/2013 12:55 PM (GMT -7)   
i know for fibro exercise is recommended, but what about for CFS? is it best to keep moving and try gentle exercise like walking / stretching when you can?

Im frightened to move sometimes, for fear of making the illness worse.

I have become resigned to the fact that I will never play tennis again, but will I dance again, will I run again?
Diagnosed with Fibromyalgia in March and now looking for friends to help me in my fibro journey :o)

Recoveryme2day
Regular Member


Date Joined Jul 2012
Total Posts : 335
   Posted 7/25/2013 3:06 PM (GMT -7)   
Its more less the same things you do or don't do for Fibro you also do or don't do for CFS. CFS for me has been like SuperFibro, everything I have with fibro, the foggies, the aches and pains and most especially the exhaustion. When I started having symptoms thats what they were, I hurt more, like twice as much more, the brain fog got so bad I had to stop driving unless it my son couldn't take me, and Sleeping, I slept an average of 12-14 hrs a day! And there was any activity in my day, that would go up to 18 hrs! Dancing for me is a maybe every 6 months and running, no way, I can barely walk my dog, taking him to the dog park is a major excercise event for me and requires a 3-hr nap just to get through the rest of the day. Having given you all the bad news, cheer up, everybody who these 2 diseases has different symptoms and different tolerances. And i also have cancer, so everything is super-sensitive for me. I hope that helps, hang in there and keep asking questions, I'll keep asking too.
Craniotomy/Meningioma 12/02,Bi-P. 04,SMI 06, Glu./Wh./La. Int.,IBS 06, Mig. w/ps.-seiz. 07,Dev.Sep.Sur. 9/07, 2nd Men./Tu. Gam. Kn. Rad.12/08, Rad. Hyst. 09/09, w/Meno, Fibro. 09, Disab. 09, EBV/CFS? 11, Vom., D + C w/Vertigo 12, C-diff, spas. col., Chr. Fat. Mod. 13, Lots of Meds they ch. often + herbal meds + alternative when I can afford it.

ladybugdreams
Veteran Member


Date Joined Jun 2008
Total Posts : 726
   Posted 7/25/2013 10:11 PM (GMT -7)   
As far as exercise goes, I am the worst to ask, I hate exercising!!! That said I do try to exercise when I am feeling better but when I am down for the count, I take it easy because I don't want to make myself sicker. My daughter ordered an eliptical that should be here tomorrow & I am going to start using that, I will let you know how it goes. I have ridden on a bike (stationary) for awhile & had no problems but I limited myself on how long I would do it for. Keep your exercise to low or no impact, anything above that can cause a "crash" & you could be down for days. Just like anything else with this illness you need to see how things affect you, go slow on anything new to test it out. Keep us posted to how you are doing. Hugs, Denise
Fibromyalgia-dx'd: 2006, ME/CFS-dx'd: 2006, Holt-Oram Syndrome dx'd 1975, reduced lung capacity dx'd 2009, nasal allergies, food allergies, depression (lifetime problem) IBS, neuropathy in hips

I have 4 children & 7 grandchildren.

As apples of gold in silver carvings is a word spoken at the right time for it. Prov. 25:11

kayla33
Regular Member


Date Joined Jul 2013
Total Posts : 86
   Posted 7/26/2013 9:43 AM (GMT -7)   
I can't exercise because I am barely able to even move around the house. There were periods / fluctuations where I was able to exercise and try to keep healthy. At the current time, its a complete no-go for me, and i refuse to push it.

My personal opinion, is to do a few tests on yourself. Like force a session of exercise and monitor yourself. Because everybody's degree of impact of this illness is different and widely varies, you may find that you CAN do a certain exercise for a certain period of time, etc.

That way at least you know and will be able to stop wondering about the possibilities.

Of course, there will be many who are strictly against pushing or trying. But we all have different tolerances and pain levels and symptoms and causes etc. You never know until you try. Keep a diary of it.

At least its better than doing nothing, wasting time wondering, and letting life slip away. Myself, I will take my own advice when i am a little better. For now I have a major flare of symptoms and am incapacitated. Perhaps in a few weeks I will have a good few days and can try and see what I can do.

Some people find walking in the swimming pool is gentle and good. I have done that a few times.

There are the fit normal people doing exhausting laps around me in the other lanes, and there I was just walking up and down the lane. :-) It was good.
/
Newly registered contributer/member, but long time lurker/reader.

olivia l
New Member


Date Joined Jul 2013
Total Posts : 11
   Posted 7/26/2013 12:21 PM (GMT -7)   
I learned the hard way with trying to push myself. Before I got sick I would do two miles in thirty minutes daily. Oh what I would give to have that feeling of a good work out again! Now if I climb the stairs I am done for. I literally am down to just the basics...laundry, dishes, and sometimes cook. Leaving the house is tough. I am new to this forum. I think talking with others makes things a little easier. Thanks

Minnesota
Regular Member


Date Joined Jan 2012
Total Posts : 136
   Posted 7/29/2013 7:22 AM (GMT -7)   
As with the rest of the advice here, you will have to try certain levels of exercise to see what you can tolerate.  Having been an endurance athlete prior to my CFS, exercising was just part of who I was.  It devastated me to not be able to do the workouts I did for so many years pre CFS.  That being said, I decided I had to do something physical and see what I could do.  I probably have a mild case, but I run 1.5 miles on the treadmill or 6 miles on the stationary bike every other day.  Psychologically it has helped me a ton to just sweat a bit now and then, and feel some connection to my past self.  I made a few mistakes in trying to determine what I could tolerate exertion-wise, but I am comfortable with where I am at now.  If you can find a point where you don't crash, do it.  I just feel  a sense of accomplishment after doing this.

Wackers34
Veteran Member


Date Joined Apr 2013
Total Posts : 694
   Posted 7/29/2013 8:48 AM (GMT -7)   
wow thanks Minnesota...that has given me some hope..I havent even tried, so probably should

Are you able to manage your symptoms quite well? What meds if any are you on?

Im still unsure if I have fibro or CFS or both, but I guess protocol is much the same to a certain extent.

I do ache quite a bit just from walking from my car to car park - but this can happen in fibro also...Mainly my legs (shin splint type feeling in shins and thighs) and achy arms and neck...Im not sure I get the Post exertion malaise from doing things, just seem to be poorly no matter what I do..even if been in bed all day :o(
Diagnosed with Fibromyalgia in March and now looking for friends to help me in my fibro journey :o)

Minnesota
Regular Member


Date Joined Jan 2012
Total Posts : 136
   Posted 7/29/2013 9:55 AM (GMT -7)   
Again, I have CFS and not fibro along with it (thankfully).  I can manage my symptoms best on this regimine of meds/supplements:  30 mg Vyvanse, 100 mg Wellbutrin, Vit B complex, and D Ribose all daily.  I rotate in some potassium and vit D as well.  I still work FT, but basically out of necessity.  I need the $ for now, and also the health insurance.  I applied for part time disability a year and a half ago, and was denied....not sick enough of course. The above regimine allows me to do the best I can, which is operate at about 75% of my previous level of health.  It is a tough journey, because there are so many tests to be performed, and no one solution to regaining health.  I had a viral onset to my CFS, so at least I know a trigger.  I can pinpoint the exact weekend when I went down with this.  So hard to understand how a bout with what seemed like a benign flu could put me into this state almost 3 years later.  Keep us up to date on your journey.

Dollypolly
New Member


Date Joined Jul 2013
Total Posts : 4
   Posted 7/29/2013 12:31 PM (GMT -7)   
Hi, I just discovered this forum whilst looking for something on the specific carbohydrate diet which I've tried for fibromyalgia and CFS and IBS and Celeac and saw your discussion on exercise. I'm still struggling with my own exercise and it is a million miles away from where it was but something that I have found very helpful has been pacing. I learnt about this through a pain clinic this was a course of 10 sessions learning how to manage pain and to pace. I'm in the UK so this was free on the NHS. I will crash if I do too much so I have to build up very very slowly. Then if I over do things I have to go back a few notches until I can get back to the previous level and I do often spend alternate days on the sofa to build up some reserves. Today I managed 15 minutes Pilates at home, a yoga class (slow) and a swim. I underdo everything and never push myself other than for my 10 minute basic level on alternate days. If you push too hard you will continue to crash to a lower level. Travelling, colds, arguments, etc will all make things worse so the key is to remove as many of the factors from your life that don't support your recovery so that will involve talking to the people around you to get their support and making life easier for example, cook more when you have the energy then freeze some for the days when you can't face it. I have looked at Reverse Therapy and adrenal fatigue and a few other things as well. I think diet makes a difference and life style a huge difference. Best wishes for your journey.

Wackers34
Veteran Member


Date Joined Apr 2013
Total Posts : 694
   Posted 7/30/2013 5:41 AM (GMT -7)   
Hi Dollypolly

Wow thanks for the advice...Yeah im in UK too.

I might ask about the pain and pace on the NHS...is this at a pain clinic?

Do you have children - how do you pace with children? Its the summer holidays now and my husband is at work - i have to manage two kids 3 and 5. Im not at work currently

I have contacted the Optimum Health Clinic in London and am thinking of going down their nutritional and pyschological route - Adrenal testing is an option there and Michocondrial (can't spell it)
Diagnosed with Fibromyalgia in March and now looking for friends to help me in my fibro journey :o)

ladybugdreams
Veteran Member


Date Joined Jun 2008
Total Posts : 726
   Posted 7/30/2013 7:54 PM (GMT -7)   
Wackers, going to a clinic such as this one is so cool. I wish the best for you. How soon till you will be going? It is interesting that they will be looking at mitochondrial function, that is like cutting edge medicine. Keep us posted what you find out & anything that helps you. Hugs, Denise
Fibromyalgia-dx'd: 2006, ME/CFS-dx'd: 2006, Holt-Oram Syndrome dx'd 1975, reduced lung capacity dx'd 2009, nasal allergies, food allergies, depression (lifetime problem) IBS, neuropathy in hips

I have 4 children & 7 grandchildren.

As apples of gold in silver carvings is a word spoken at the right time for it. Prov. 25:11

Wackers34
Veteran Member


Date Joined Apr 2013
Total Posts : 694
   Posted 7/31/2013 6:15 AM (GMT -7)   
Hi Jewelrylady
you have two 15 min session chats with both a nutritionalist and a pyschologist...then they decide or you decide which route to go down for treatment, or you can do both.
I have already had the nutritional chat and that is where she has talked about testing for adrenal and mitochondrial, also absorption testing - to see if your body is absorbing things.

I have decided I might go down this route first...Its in London (only 45 mins from me), it is quite costly but not as expensive I have seen others. So will probably book my first session in August.

Although its in UK, they help people all round the world - you can check out their free videos on youtube - just type in Optimum Health Clinic...You can also request a free info pack and dvd - with many success stories...Most of the people that work there have had M.E /CFS or Lyme

Check it out and see if you think it looks worthwhile

My friend had M.E when she was a teenager - I know you can recover better from a teenager - she had it for many years and is now a lawyer traveling the world - she checked it out for me from a legal perspective and said it all looks good
Diagnosed with Fibromyalgia in March and now looking for friends to help me in my fibro journey :o)

Wackers34
Veteran Member


Date Joined Apr 2013
Total Posts : 694
   Posted 7/31/2013 6:18 AM (GMT -7)   
This is their website

http://freedomfromme.co.uk/
Diagnosed with Fibromyalgia in March and now looking for friends to help me in my fibro journey :o)

kayla33
Regular Member


Date Joined Jul 2013
Total Posts : 86
   Posted 7/31/2013 7:28 AM (GMT -7)   
Adrenal Dysfunction and leaky gut are definitely two things that will work in your favour for being tested at that clinic.

Good luck
/
Newly registered contributer/member, but long time lurker/reader.
Full time researcher and freelance writer.

Deniclair
New Member


Date Joined Aug 2013
Total Posts : 7
   Posted 8/10/2013 11:24 PM (GMT -7)   
When first dx the only thing I could do that wouldn't increase my pain was water exercise. I felt so silly in a class with women 20 yrs older than me that we're exercising me under the table. I was still working has a occupational therapy assist full time using vacation days for rest. I couldn't do 5 min on a slow treadmill, but I could do the water exercises. Don't let anyone push you beyond your tolerance, it's a fine line. Gentle exercise helped me get back. Now having a setback because I get to excited and do too much. Tough lessons. Prior to onset of my fist symptoms. I was working out at the gym almost daily doing 2 miles in 30 mins. Hit like the flu and didn't go away. Been dealing with this since 99 . First three years really hard, learning to manage symptoms is key. The first time the meds they were giving me were causing symptoms as side effects.

ericat
New Member


Date Joined Aug 2013
Total Posts : 1
   Posted 8/21/2013 9:01 AM (GMT -7)   
I have CFS and am off work on disability! cry I am constantly struggling to find that balance between activity/exercise and de-conditioning from lack of energy. I do try to “keep moving” in the house and go outside for walks. I have also found a program called “Sit & be Fit” that helps me utilize other muscles that I wouldn’t normally use and to keep them toned. Sometimes I try some easy at-home exercises and workouts and as well fibro fitness. Exercising does help me!

Minnesota
Regular Member


Date Joined Jan 2012
Total Posts : 136
   Posted 8/27/2013 12:59 PM (GMT -7)   
Curious about the mitochondrial testing......what exactly is the test for this? A biopsy of the muscle tissue?  I was always intrigued by a major league ballplayer named Rocco Baldelli who was dx with mitochondrial disorder.  He was a very promising player who all of a sudden came down with these dabilitating bouts of severe fatigue, and eventually caused him to retire.  He couldn't generate energy like normal people was the basic explaination.  But being a super athlete he was able to really know the difference, and had no other real symptoms other than unexplained fatigue and muscle weakness.  Anyway, any ideas on how they test for mitochondrial disorders would be welcomed.

johnnyboy07
New Member


Date Joined Sep 2013
Total Posts : 19
   Posted 9/5/2013 5:55 PM (GMT -7)   
First off, someone needs to ban Medillin for spamming. 2nd, exercise can be really bad for CFS/ME patients. Don't over do it. Listen to your body.

Vitality Lady
New Member


Date Joined Sep 2013
Total Posts : 15
   Posted 9/19/2013 12:10 PM (GMT -7)   
Love all the comments about exercise.
I was a Personal Trainer, Medical Exercise Specialist and aerobics instructor for over 25 yrs until my diagnosis of Post Polio Syndrome. Imagine having to stop all of that and be told that I will most likely be in a wheelchair within 2 yrs. Thank God I found ways to heal.
Of course, with mobility issues that will continue to get worse (I'm 63), there is no more cardio, tennis, heavy strength training or rollerblading in my future but thanks to my mentality of attending every training program I could find, I still keep my body strong and healthy.
Fatigue is huge with PPS...rather like CFS but I don't suffer. If my muscles get weak and I don't exercise them, my ability to walk may disappear.
So....here is what works for me but everyone is different and so your symptoms MUST guide you. If your body says 'rest', then you do that.
I use a mini trampoline 3 - 4 times a week for 5 mins. I use light weights and bands for ALL muscle groups...20 to 30 repetitions one time only. I do this twice a week. I warm up and stretch all muscles every day. I meditate / relax / guided imagery for 10 to 30 minutes 2 - 3 x weekly and I rest when I need to. I work out of my home full time but the above are solid priorities.
I drink lots of water and eat only a raw, plant based organic diet...no supplements.
My Doc has said my annual physical test results are that of a healthy 24 yr old!!
I can no longer physically be a Personal Trainer any more but I have set up a blogsite to at least provide some articles to start thinking about how to heal. www.vitalitylady.ca
Our bodies are amazing at healing but it has to be as mother nature intended.
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