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Old 08-18-2011, 08:10 AM   #1
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Things that helped me with cfs #2

I wrote a thread before, this is a better explanation of cfs for me. I hope this can help people relate and hopefully help in their recovery.
Symptoms:
Exhaustion - constantly tired, no energy. Before this if I was tired and had to do something I still had the energy to do it. Now when I'm tired there's no energy there.
Crash - instintly get wiped out. No energy to do anything. Completely drained. Can last from 1 hour through the rest of the day.
Relapse - same as a crash except last days. Use to last me 5 - 7 days. Now 2 - 4 days.
Headaches - get headaches. Also extremely sharp ones at night. If the sharp ones keep happening the only thing that helps is to go to sleep.
Dizzy Spells - dizzy spells also have where everything around me will seem to move or shift all of a sudden. If this happens I will be dizzy anywhere from an hour to the rest of the day. Has gone into the next day. Also have fallen from this.
Shortness of Breath - Walk a flight of stairs, it's like I ran a marathon. If I'm doing something physical I can lose my breath. Can last from an hour to the rest of the day. Has gone into the next day.
Cold hands and feet - the worse I feel the colder they can get.
Nausea - never get sick, just feel like I will. I don't have this very often anymore.
Brain fog - have a tough time remembering things. Know I know something but have a tough time grasping it. Always feel like I'm in a fog. I was playing cards and I crashed and my brain fog kick in and I couldn't remember what beat what the rest of the time. That's when I realized how bad it was. For me, out of all the symptoms this was the worst because I never felt like myself.
Anxiety - for the longest time I couldn't figure out why I had anxiety from this. Then I realized that because I don't have the energy like I use to and these symptoms could hit me at any time without warning, that whatever I'm doing I not sure if I was going to be able to complete it. Example, I was grocery shopping one time and instintly crashed. I left the cart and had just enough energy to walk to my car.
Morning Blahs - completely drained when I wake up. Use to last 5 - 6 hours. Now it's about 1/2 hour to an hour. Want to get up and get going but feel so run down. Not depression. I've been lucky where I've had very little depression from this. When I'm depressed I don't care about doing anything. With cfs I want to do things but the exhaustion makes it hard or impossible.
Chest pains - When I drank alcohol I would get this. Alcohol could also trigger my other symptoms. I haven't drank for a year and haven't had the chest pains since.
Muscle jerks (twitches) - get these at night when I'm in bed or sitting in a resting position. I have read some people with cfs have sleep apnea and muscle jerks are common with people with sleep apnea.
Ear pain - I have tmj. I clinch my teeth. I had really bad ear pain and was extremely sensitive to noise. I would have to turn the volumn down on the tv where I could barely hear it. When I learned I have tmj I was shown exercises to help relax my jaw and loosen the muscles. I had been clinching my teeth for so long it took me about 4 -5 months to get the muscles loose around my ears and jaw. Now I have little ear pain and sound sensitivity. Exercises: turn head left count to 10, turn head right count to 10, lean head left count to 10, lean head right count to 10, lean head foward count to 10 and lean head back count to 10. I did this 3 times a day. Also, have mouth slightly opened and massage in front of ears down your jaw. I could feel how tight all my muscles were in the beginning. We have sacs about an inch down from our ears on the jaw. Mine were swollen from clinching my teeth and that was causing pressure on my ears.
Sleeping - early on I was sleeping 10 - 12 hours a night and was still exhausted. Then I was only getting 4 hours of sleep at the most.
Things I take - My body is sensitive to anything I take so I can usually tell right away if something is working for me or not. If something seemed to work for me I would continue taking it even though later on at times it didn't seem to be working. When I'm in a crash or relapse nothing seems to work.
Anxiety - citalopram 20 mg daily (June, 2010)
Sleeping - trazodone 50 mg 1/2 a tablet before bed (June, 2010)
Nasal strips - (Nov.,2010) the cheap ones didn't work as well for me. I use the advanced ones.
Sinus flush - (Nov., 2010) I use a squeeze bottle. do it about 2 hours before I go to
bed. Use distilled water, not tap water.
I read these 2 things help people with sleep apnea. They helped me.

Muscle jerks (twitches) - The nasal strips and sinus flush really helped a lot with this. I don't have them as often as I use to.

Shortness of breath - d3 (Nov., 2010) as needed. I read d3 can help this so I tried it. Seems to work about 10 - 20 % of the time for me. I have done the nasal strips and sinus flush during the day for this and that has also helped me.

Magnesium - 500 mg daily (Oct., 2010). I read this can help people with cfs. It really helped me.

Epsom salt - (Nov., 2010) epsom salt has magnesium. I bath in it every morning. Body will absorb it.

D-Ribose - 1500 mg 3 times a day (Dec., 2010). I read this has helped people with cfs. Seemed to give me a boost of energy when I first started taking it.

Bio-Strath - 3 times a day(March, 2011) it's a whole food supplement. This was huge for me when I started taking it. Not only did this help me with the exhaustion but it's also the one thing that help my brain fog.

Stretching - (Sept.,2010) I read some people with cfs have old injuries and certain movements can trigger it. I saperated my shoulder really bad over 20 years ago. I was sweeping the garage one day and instintly crashed. I figured out that movement triggered my cfs due to my shoulder injury. I started stretching it in the morning and at night. This helped my symptoms.

Eating - Early on I felt so bad I hardly ate anything. I noticed when I ate something I would feel a little better. Later on I was always hungry. I figured out that if I ate 4 times a day I would feel better. If I was hungry in between I would snack. When I get hungry I try not to wait to long before I eat or my exhaustion will kick in. If I started feeling better and wasn't eating like this, I would end up crashing after a couple of days. I started to notice that if I would get tired all of a sudden for no reason (which happens all the time with cfs) and I ate something it would perk me up after about an hour. I've started to be able to sustain my energy level better so I don't have to eat as often. I don't eat junk food. If I do it makes me feel worse. Breakfast really helps me in the morning. Last time I saw the doctor he said eating for me is like taking my medicine. I never thought about it like that before. But he's right. I had put on over 30 pounds by eating like this. Since I've been able to maintain my energy level better I lost 20 pounds of it.

Walking - Walking has increase my energy level and has helped with my exhaustion. I try to walk 2 - 6 times a day for 20 - 30 min.. Rest at least 1 hour between walks. This pattern seems to work best for me. If I go longer or don't rest as long between walks I end up crashing or relapsing. I read that people with cfs recover better if they are able to push through the tiredness. I was pushing myself before I read this. When I'm in a crash or relapse and try to walk I noticed that my symptoms will get worse. I don't push myself then. If I'm tired and walk and my symptoms don't get worse I will keep going. The one thing I noticed when I first started walking was that my morning blahs weren't lasting as long.

Speed - If I try to do things fast or quick my symptoms will get triggered. I usually end up crashing or relapsing.

Breathing - I read some people with cfs breathe with their chest. I'm one of them. Breathing like this I wasn't using the full capacity of my lungs. I went on the internet to learn the proper way to breathe.

Flossing - When I was in really bad shape and flossed I noticed I felt a liittle better. Our **** contain bacteria and flossing helps kill it.

I brought this list of symptoms and things that worked for me to the doctor last time I saw him (I had a new doctor, the other one moved). It helped him understand more what was going on with me than if I had gone in and told him everthing. There's to many things to remember and explain.

Learning to recognize when I'm in a crash or relapse helped me start recovering better. When I'm in a crash or relapse and try to do something I end up getting worse so basically can only rest and wait for it to pass. If I'm not in crash or relapse and am extremely tired it's better for me to try and walk or do something because I noticed the longer I rest then try and do something it's that much harder to do it and takes me that much longer to get over the exhaustion. Also figuring out what caused a crash or realpse help so I wouldn't do it again. A crash or a relapse can happen a day or two after I do something.

I have been suffering for over 2 years with cfs. I had a physical job. June 2010 my last day of work it felt like I was going to collapse. I couldn't do it anymore. I had been going for a year on fumes. I looked like hell. It looked like I had been punched in the face the bags under my eyes were so big and black. My face was constintly pale and eyes were blood shot. I looked like this for months before and for months after I stopped working. The worse I felt the worse I looked. The first 3 weeks I was off work I was in bed or the lazy-boy. If I tried to do anything I would crash or relapse. The longest I would go was a 1/2 day to a day and a half before I would crash or relapse. I would lift a bag of groceries and crash. This lasted at least 4 months. I got diagnosed with cfs in August 2010. I was relieved to finally know what was going on with me. I had been seeing a therapist and she said that made sense and that I was stable.

I was in such bad shape the things that helped me were really noticable at the time I took or did them. I still do or take all the stuff I stated but I don't always notice them like I use to. I seemed to have improved in stages. Each stage felt so good but after a week or so I was still suffering so much I couldn't wait for the next stage. That's what gave me hope was that I kept telling myself that if I improved this much I can improve more next time. The first time I felt any improvement I was walking and my exhaustion had cleared up. It lasted about 2 min. I said," if it can last 2 min. this time it can last 5 min. next time."

The shape I'm in now compared to what I was a year ago is pretty incredible. I still have problems at times but I'm able to physically do things for 2 -3 hours now. If I go longer I will crash. When I do relapse if I need to do something that isn't to physical I'm able to do it. I'm laughing and smiling again.

If anyone has any questions don't hesitate to ask,

Joe.

 
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Old 10-25-2011, 05:58 PM   #2
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Re: Things that helped me with cfs #2

Joe, when you say "d3" helps with shortness of breath, you're referring to Vitamin D3? Sorry, I'm relatively new to this.

 
Old 10-26-2011, 01:46 PM   #3
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Re: Things that helped me with cfs #2

Hi Brodie, yes it's vitamin d3. Make sure you try and eat 3 -4 times a day even if your not hungry. I really do beleive that's important. No alcohol. That triggers symptoms. Bio-Strath was hugh for me. One of the main ingredients is saccharomyces cerevisiae 5018mg. I looked it up and it's a nutritional yeast. Vegans eat nutritional yeast to help them get enough protein. So basically it's a big protein burst. Our brains use a lot of protein and that protein burst helped my brain fog. Also been eating nutritional yeast at times. Does seem to help. Something I started trying is increasing my potassium. Bananas, cocanut water, etc..Cocanut water I mix with juice. You should look up potassium, magnesium and the b vitamins (b6) (sunflower seeds , liver, peanuts) and see what they do. I think one of the problems people with cfs have is the energy is there but it's not getting tranferred. I've crashed instintly and snapped out of it instintly. Like the energy suddenly stopped then started again. Have to figure out how to keep the enegy flowing . The eating, walking, bio-strath, magnesium, potassium all seem to have helped me with this. I really hope something in here helps you. If you have anymore questions don't hesitate to ask.
Joe

 
Old 10-26-2011, 10:25 PM   #4
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Re: Things that helped me with cfs #2

Thanks again, Joe.

Today I started on an array of supplements based on the most common suggestions I've seen on this site and other CFS resources. D3 is one of them, based on your suggestion, plus Ribose, Coenzyme Q, Acetyl L-Carnitine, and a Vit B&C complex. I've also started eating 1-2 bananas a day for the potassium, so I was glad to see you suggested that too. (I didn't know about the coconut milk).

Later, I plan to add magnesium, as you suggest, and B-12 injections when they arrive in the mail.

The only problem with all this (besides the cost!) is, if they work, I won't know if I need them all, or just one or two! If I get to that point, I'll experiment with cutting back one at a time.

 
Old 10-27-2011, 11:24 AM   #5
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Re: Things that helped me with cfs #2

Brodie, I tried a million things to see what works. Lots of half used bottles left. I try to get as many viamins and things through my diet. That seems to work pretty good for me too. It's coconut water I drink. Not the milk. Hope somnething helps. Keep me informed. Like I said I've improved a lot and any information I have that can help you or someone else is great. I know how much people suffer from this.
Joe

 
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