Fibro Chronic fatigue syndrome and fibromyalgia

[Lionheart]

The symptoms of CFS are profound fatigue that is worsened by physical or mental activity, weakness, muscle pain, impaired memory and concentration, insomnia, sore throat with tender lymph nodes, multi-joint pain without swelling or redness, headaches, and unrefreshing sleep. Some people also report nausea and dizziness. It is not contagious and there is no known cause or cure, at least not according to the information I have from the Centers for Disease Control.

When I first contracted CFS, I was diagnosed with Epstein-Barr mono virus and Cytomegalovirus mono, I never completely recovered from this. Epstein-Barr virus is often a first symptom, but not always. I went through many months of testing to rule out other disorders such a Lyme disease, M.S. etc, before I got a diagnosis. Hope this helps!!!

 

[Tinyflame]

Yes Lionheart- certainly have all of those including the multi-joint pain and nausea, in my case. Not so often dizzy.
Sometimes - tho I walk tons- I feel like I have to sit down in the middle of the street- I mean literally.

One last question- what works the best for you to manage/ reduce the symptoms?
Thanks so much!
xox

 

[Lionheart]

You're welcome! So far what works best for me is Naproxen (prescription strength) for the aches and pains, bed rest, and reduced stress levels, (whenever possible). I am still working to find other things that help.

 

[Tinyflame]

Darn it- in Canada Naproxen isn't OTC, by prescription only.
But the stress-reduction is free. :)
((((Lionheart))))), Thank you.-

 

[mamachick]

Junebug-I was given disability for this when I was only 33 yrs old-was very bad. I was also diagnosed with active Epstein Barr at the onset. I also had IBS and was told that I had candida intestinally, at the beginning, I had an episode of thrush. I recovered about 80% functional, and collapsed again several years later after a bad accident that also brought out symptoms of ptsd.
I think help is trial and error but doctors told me not to drink city water and we began buying bottled water-I drank lots of it.
Ate all day long rather than bigger meals. Kind of grazed. Kept finger foods handy. Lots of veggies. Any medicine that provides good night sleep. Years ago Serzone helped me sleep regular but was taken off market. Going to bed at same time every night and up at same time. Stretching regularly several times throughout the day. IB Profin helped my pain but I learned to take it before the pain got bad. Reducing stress included having to eliminate negative and toxic people from my life, changing beliefs/how I thought about things, pacing myself, walking which increased over time, taking on hobbies like painting to relax, yeast free multi vitamin, I microwave heat packs for pain too. Reduced sugar products.

I have always felt that my sleep was not restful w/o help. I dream about problems and awake in pain and tired. For me, half the battle has been getting good sleep. I still am not and take Ambien which helps until I figure something better out.

 

[Tinyflame]

Thank you brat, so much.

 

[Bosco2153]

Yes I have FM and CFS. Just recently getting therapy for my ptsd and seeing here that I'm not the only one with what seems to be a series of conditions that often come in a combo package.

 

[OKRADLAK]

I have just gotten a spike because I was manic for several weeks. My body just cannot recover from mania anymore and I am sooooooo drained. I can hardly get out of bed.

I get terrible leg pain and blood sugar goes crazy as well as the hearbeats, neuro symptoms, etc. Like my body is on a torture wheel.

I do not have an official DX because I have not asked for one, but I have the EBV and CMV markers. I am glad I do not have the dx because now they are tracking me for neurodegeneritive and I think a dx of fibro would have obscured that.

 

[cyndiloowho]

"Often some sort of accident precipitates firbromyalgia and cfids and even irritable bowel syndrome. I am not good at explaining anything biological so I don't try, but early on, I did a lot of reading and seeking opinions of various professionals for interpretation.

When under much stress, the body goes into fight or flight response. This changes the chemistry in the body in many ways-brain-breathing-heart-adrenolin, etc. I think its going to be debatable for a long time but worth considering the correlation in order to treat the body very holistic."

Thanks, brat17, this post certainly rings true for me. My pain began a few months after my son died. I spent 2 years under Drs care, but got worse not better. Finally I fired my Drs and began looking for answers on my own. My research led me to adrenal exhaustion, and fibro, brought on by extreme long term stress . I have treated myself with holistic herbs, especially ginseng and licorice root, and a diet high in protein (50-60 gr/day), and no impact exercises (yoga and aqua aerobics). I have occasional bad days, but am mostly pain free for 5 years now.

Now the mental health work! I think my sons death was like a key that opened the door to all my layers of trauma. I certainly feel like I have been busted wide open --raw, wounded.

 

[mamachick]

cindiloowho, I am sorry for what you have been through but glad to hear you are on the path to healing. While the drs can try, I think we have to take our health into out own hands and find whatever works.
I was 90% back to normal. Then my mother went into a nursing home-I was her carer and full time student with 2 teens at home and an older daughter. Then my grandaughter died of SIDS. Then I seperated and was a single parent. Then I had a client stalk me. Then my nephew who was a quadropalegic of 18 yrs was brutally shot to death in his bed. I was still managing. Then another grandaughter was molested and the man who did convicted-sentence of 3 months in jail for molesting to children under 5 yrs old. The I had a fall and head injury. This set the CFIDS back in full swing.

 

[Lionheart]

I joined a CFS forum and talked about my frustration at being told to exercise for CFS relief. I was told that there were no words for how utterly ignorant that advise is. Low impact exercise may be helpful, but the pain and fatigue need to be treated before asking a person to exercise.

A person with CFS must pace themselves carefully and it is extremely difficult to know how much is too much exercise. If one overworks themselves, they may have to pay for it by spending the next several days in the bed and this accomplishes nothing.

There is a lot of trial and error involved in treating CFS and no one knows better than the patient what is tolerable and what isn't. I personally recommend hydrotherapy in a heated swimming pool for short periods of time to build up the stamina needed to do further exercise.

 

[mamachick]

I agree Lionheart. being told to exercise is bs.
I have so much pain from fibro that I sometimes want to do nothing. Yet my sister is the same and does nothing. I think she is worse in the end. She refuses to take meds and criticizes me for doing so just so I can take care of things. I feel like I have a better quality of life for moving more. My own experience has been that the less I move, the weaker I have gotten. So even if it hurts and I have to take meds, I do push myself. Also, when I dont do stuff, I loose that sense of any self sufficiency and feel even more vulnerable and needy (like my sis). Then I get really depressed and apathetic. When I do stuff and hurt I think I get more angry at times. ?? lesser of two evils.

Only we know what is best for each of us and how best to pace and try to keep a balance. I guess it comes down to our own personal preferences. I am more afraid of my depression than my anger