has anyone gotten over CF and had it comeback?

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freezinginAK
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Date Joined Nov 2006
Total Posts : 1052
   Posted 6/18/2007 12:06 AM (GMT -7)   
  I have had CFS for 13 years now, and about 9 years ago I had a return back to my old life, but only to return 2 years later and still have it today. But I'm trying to push myself again and getting though the pain and sleepiness of it day after day and I'm pushing it and feeling stronger every day now but still have a long ways to go I know and I still crash at times, but I'm still pushing it the next day but my down time is getting less a less but I'm not pushing it hard and still taking my brakes as needed but yet still going at it and like I said I'm feeling stronger now with less fatigue.
 
  Has anyone else had any luck trying this or had it return on them like me?
 
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hippimom2
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Date Joined Jul 2005
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   Posted 6/18/2007 6:12 AM (GMT -7)   
freezing, I really hope you continue to feel stronger and stronger. I had a similar experinece as you have had in the past. I was diagnosed with CFS in 1991 and by 1995/96 I had resumed an almost normal life. I was able to do the normal everyday things and was able to exercise. The only difference between myself and others was that I got tired more easily and every few weeks my body would crash and I'd need a day or two in bed, but otherwise I pretty much had my life back. about twice a year, my fatigue got so bad that I would go to the doctor, but it eventually went away on its own after rest. This remission lasted for several years until about 2003 when the fatigue hit hard and heavy again and it didn't go away. Now I'm sure the cfs is back along with having developed lupus, so I have a double whammy of fatigue and pain.

It sounds like your approach to this is a good one because you are challenging your body, but still listening to it. I think the danger comes when people push hard, but don't back up when their bodies tell them too. I haven't found that balance yet. Keep us updated on how you are doing.

Take care
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 25mg; Neurontin 200mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops

 

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CNSKris
Regular Member


Date Joined May 2006
Total Posts : 236
   Posted 6/18/2007 11:38 AM (GMT -7)   
I have had it come and go for over 20 years. However, my EBV blood work always stays elevated. Sometimes it is more elevated than others. Like Hippimom2, I think Lupus is a big part of it for me. My step mom has CFS too without having a systematic disease as far as we know. She had CFS real bad for years and all of a sudden it just went away for a couple of years. It is back now, but she seems to be okay and can function for the most part. I hope you get an extended break and/or it goes away completely.

Kristin
  Best wishes,
 
  Kristin
 
  Dx:  Lupus CNS 11/2005; Current - kidney disease, enlarged heart, MVP/regurgitation, dementia/Alheimer's (improving); GERD; blood clots in eyes/vision loss, narcolepsy, rheumatic arthritis and arthralgia, IBS, ovarian cysts, raynauds, EBV/CFS, mild inflammation of liver and spleen. Rx:  Atenolol, Aricept, Flexeril, Motrin, just off Provigil 
Previous 1996-2006 - discoid rash, hemi-pelagia, migraines, hands/feet sensory loss, anmesia, PTSD/Depression, imbalance, weakness and muscle spasms, shooting pain, dizziness, fine motor movement problems, miscarried 2 children & severe complications w/2 I managed to get out, False positive syphilis, swollen glands, high fine speckled & homogeneous ANA; Positive IgM; constant staph and strept UTI infections, colonitis, pancreaitis, gastritis, costochondritis, pericarditis, high Methylmalonic acid, high Epithelial cell counts, off and on low red/white or pallet counts, hypothyroidism/Hashimoto's disease, postural hypotension, dyspnea, periods of hypertension/hypotension, lipedemia, mouth/lip ulcers, pneumonia, skin tightness/hardenes, ligament conjectures, weird purple pimple rashes on legs, hypopigmentation (leopard spots) on legs and arms, vein swelling, abnormal menustration, uterian fibroids and some of the current problems.  Rx: usually Toridol, nerve blockers and antibiotics. 
 
  P.S. You asked....  Probably forgot a few.


foreverEmily1
New Member


Date Joined Jun 2007
Total Posts : 10
   Posted 6/20/2007 8:03 AM (GMT -7)   

Hello! I am new to this web site. I read about it in the local paper.

I had CFS for 10 years. Had all the systems and was tested to the point of what do we do now? The doctors finially told me I would have to cope and cope I did.

One day I was watching a program on tv about a treatment they were giving to others who had CFS. They were putting the people into a hot tub and running their body tems up to 102 degrees and letting them stay in there for 15 minitues and not more. They did this 3 times and found that  they got good results.

I had noticed that I never ran a high fever and every time the bad spells would come, I would chill but there again I did not run a high fever. I noticed that when not chilling my body temp was lower than normal. I had just chulked this up to part of the CFS.

After much consideration I decided to see if I could help myself. I did not have a hot tub but a regular tub. I assembled a heavy large towel, a mouth thermomiter, a cooking thermomiter and full glass fo water, set next to the tub. I set the water to a warm bath and started a constant running of the hotter water to try and keep the water hot. my aim was to get my temp up to the 102 degree and stay in the tub for the 15 minutes. I put the mouth thermomiter in my mouth and the cooking thermomiter clipped on the edge of the towel I drapped across me to keep me wet, warm and coverd as much as possible.  It took me a long time, over an hour and kept upping the water temp as hot as I could stand but not to scald me. I have very senitive skin so I had to watch not to get too hot. I only got my temp up to 101.

I must warn you that if you try this do not do this alone as I found myself getting very weak, and nasiated at times and had to drink some of the water. It was not fun but got very uncomfortable at times. Have someone there with you and to help watch your progress and keep an eye on the whole process. After the 15 minutes I was at the 101 temp I could stand no more and had my husband help me out of the tub and up to bed. I did this treatment again about a few weeks later.

That was 10 years ago and I have not had any returns of my CFS. I did notice I had nerve damage and the short term memory I suffered with took a long time to return and never to a full degree.

I now feel so good and have gotten on with my life and I feel I had to take matters into my own hands to get myself into remission.

Hope this helps someone else. My doctor was amazed at how well  I have done so far.

I am sorry for the misspelled words but could not find spellcheck on here.. . . foreverEmily1

 


freezinginAK
Veteran Member


Date Joined Nov 2006
Total Posts : 1052
   Posted 6/21/2007 1:20 AM (GMT -7)   

  Still trying to find that balance, but I'm still pushing myself and taking the brakes that I need but pushing it still and still finding days that I must rest but the resting period is shorter then before, I just hope I can beat this again but there is a lot of pain from it (but no pain no gain right) lol

 Can't try the hot tub thing Emily, I live in a part of Alaska with no running water and no tub for now. lol

  Some way some how I will beat this as I have gotten over my Anxiety by sure will power, I know I can't recover from all that I have, but I will win this too no matter how hard or painful it will be I will do it, for my own sake.

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foreverEmily1
New Member


Date Joined Jun 2007
Total Posts : 10
   Posted 6/21/2007 8:47 AM (GMT -7)   

Cowboy,

I am not a doctor so I am coming to conclusions on my own but,  the body kills off germs/viruses in the body by running a fever. I  understood the hot tub procedure was to  raise the temp of the body, to kill the invasion of whatever, if the body could not do this on its own.

when I first got sick the doctor told me a very bad virus had attacked my body. After being very sick for 10 days I found myself in a state of not being able to do much and it took a long time to recover to a point to where i could funcion again. they first thought I had a stroke but ruled that out by test.

What I had after that was a return of my "viris" or the "attack" as i call it, about every 3 months or so. I would start out with the low grade fever of chills. I would chill all though the next 12 hours or so and when it was over I was left with the pain, and alot of the other symtoms of the CFS. Of course i did not know this was what it was at that time and did not get that knowlage until many years later. Each time it would attack my body I would get be left with some different symtoms to have to cope with until the next time I got the attack. Each time, my body would have  to recover some until the next attack. It never got to the point of "normal".

the thing that I noticed most was the fact that my body, for some reason, would not raise the temp of my body high enough to kill anything. I had taken antibodies from the doctor and it never seem to take care of it so my only hope was to do something on my own and the hot tub idea was the thing I dedcided to try.

I did not find out I had CFS until I had suffered for over 4 years. I knew I had to do something and the doctors never seem to know what to do other than to treat the symatoms and tell me I would have to live with it.

You may not be able to do the "hot tub" thing and need to find some other way to raise your temp if you think this is something you think might help you.

I think everyone has a different body and systems within, as each of us are only human, and each of us has to find his own cure if we are to get one.  I don't think we should just sit back and say "oh well". Good luck.


freezinginAK
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Date Joined Nov 2006
Total Posts : 1052
   Posted 6/21/2007 3:07 PM (GMT -7)   

  Hi Emily

  I never had a virus or anything like that. But what did happen, I used to paint cars for a living and got overexposed to the chemicals and went down just like that with anxiety, mcs, cns damage, and so on, but I really don't get sick that much at all.

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  Anxiety/Panic, CFS, CNS damage, MCS and Diabetes type 2
 
 


freezinginAK
Veteran Member


Date Joined Nov 2006
Total Posts : 1052
   Posted 6/26/2007 5:02 PM (GMT -7)   

  I have been working hard on this CF and fighting it must of the pain is now gone and I'm getting stronger and not needing my daily naps I still take the brakes that I need so I don't crash but even they are getting less and less just fighting though the mind set and keeping busy really has helped but my down time is a real killer for me

  Cowboy up


   Forum Moderator A/P
 
  Happiness is sitting around a warm campfire with no worries or cares as day turns to night.
 
  Help Healing Well grow as your donations are greatly appreciated @
          www.healingwell.com/donate
  Anxiety/Panic, CFS, CNS damage, MCS and Diabetes type 2
 
 


Golden_1
New Member


Date Joined Jul 2007
Total Posts : 1
   Posted 7/4/2007 3:49 PM (GMT -7)   
Hi, I'm new here. Have had CFS for about 7 years now. I wonder if anybody has had any luck with the Fibromyalgia and Fatigue Center? Went to seminar about their treatment in Norwalk recently, but it seemed a little suspicious when a supposed "patient" who "just came to pick up" her medications joined the group. She kept telling everyone how much she has been helped, but she almost appeared to be an employee of the place.
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