Its like the flu that never goes away.....
By TessWhite
@TessWhite (3146)
United States
July 28, 2008 1:37pm CST
How many of your out there have CFIDS (Chronic Fatigue Immune Dysfunction Syndrome)? Its also known as CFS and M.E. How many are even familiar with this nasty illness? For those of you who don't know the illness its like having a severe case of the flu, that never goes away. You have body aches, fuzzy thinking, fever, sore throats and overwhelming fatigue. These are just some of the symptoms.
I've battled this stuff most of my life. Although we didn't understand when I was a child what all the symptoms meant. Frequently tired, sore throats, fevers and aches and pains. It wasn't until I was in my late 30s when I became much worse that doctors finally starting doing more tests and ruling out other options. After two years I finally had a diagnosis. CFIDS and Fibromyalgia. I admit I was so happy to finally have a name to what my problems were. That is until I researched them both and learned there is no cure or set treatment. I thought great, leave it to me to get one that can't be cured.
I've had my ups and my downs over the years since my diagnosis 12 years ago. But during that time my health has continued to decline. I develope another new illness every year or two. I joke that I take so many pills I don't need food! But lately, I am in a real funk and I just can't get out of it. I now have oxygen in my home and daily breathing treatments. I am so tired I get dizzy and find myself napping whenever possible. I get up to do something and get out of breath and I'm right back in my chair. My home is a disaster, and I just can't get up the strength to deal with it these days.
Now, don't get me wrong, I really am NOT asking for sympathy. What I am asking for is understanding and maybe some helpful ideas on how to get myself out of this funk and how to cope with my severe lack of energy. Its so wearing on you physically and spiritually to be in constant pain that never goes away. Does anyone have any great ideas or inspirations for how to get past this?
4 people like this
6 responses
@tyc415 (5706)
• United States
28 Jul 08
My youngest daughter could not figure out why at times she had so much pain and the doctors run all sorts of testing and couldn't find anything wrong. She was finally diagnosed with Fibromyalgia. She is taking Lyrica daily. There are days she can't or don't feel like doing anything but with a child she knows she has to. Can you tell me what the reason for being on oxygen and breathing treatments are for? Anything to do with the fibromyalgia or cfs? I sure hope that days start getting easier for you. I know, it is no fun when your health is not like it used to be and can't do things that used to be taken for granted.
4 people like this
@tyc415 (5706)
• United States
28 Jul 08
My daughter can really tell if or when she don't take the lyrica so I guess it is helping her some. She did take they cymbalta for awhile but it didn't seem to help. As for side effects, I guess the only thing as of now is some weight gain. Please keep us informed to your health and I sure hope you can get some energy back.
4 people like this
@TessWhite (3146)
• United States
28 Jul 08
Hi T - I'm sorry your daughter was diagnosed with Fibro. It isn't an easy illness I know. Often what gets me thru my days is an online support group I belong to. My oxygen and breathing treatments are for my asthma with COPD. Its a new thing I was just put on about 8 weeks ago. While it helps me sleep better I can't see that its doing anything for the fatigue. They had thought it might.
More than anything to me its just frustrating. I used to walk 4 or 5 miles a day. I worked full time, had tons of friends, and even did all my own landscaping - including a pond with fountain! Now I often can't summon up the strength to go out and water my small flower bed.
Is the Lyrica helping your daughter? Everyone in the Fibro group that has tried either Cymbalta or Lyrica say they have seen no improvement, only bad side effects.
4 people like this
@redyellowblackdog (10629)
• United States
28 Jul 08
I have heard of it. There have been some reports of people going very strict on proper nutrition, eliminating artificial sweetners, (especially aspertame), and including moderate exercise, (at least 1/4 mile walk - work up from there) that improved somewhat. No miracle cure promised, but for some people, proper nutrition, eliminating nutra sweet (& other chemicals), moderate exercise, and perhaps vitamins and minerals does offer some help. It sure can't hurt.
4 people like this
@TessWhite (3146)
• United States
28 Jul 08
You name it I think I've tried it. Everything from good diets, to exercise, to vitamins to B12 shots to antidepressants. Apparently I haven't found the right mix for me. Thanks for the reply.
4 people like this
@ella1bella (839)
•
28 Jul 08
I have a freind with CFS and she has just been diagnosed as having fibromyalgia,she is permanently weary,and some days she isnt able to function so she stays indoors where she feels safe.Her hubby takes her out when she starts to feel better.She doesnt ask for sympathy,she just asks for understanding.
4 people like this
@TessWhite (3146)
• United States
28 Jul 08
I hope that you can remain her friend. Mine gave up on me years ago. Friendships are hard to maintain when you can sometimes go for months not able to do much. Thank you for your reply.
4 people like this
@CharRay7 (1549)
• United States
28 Jul 08
Hi Tess, my friend,
I'm so sorry to hear about your illnesses but again I know how you feel. I don't have CFIDS but I have a number of illnesses that make me feel drained.
Just like today, I've been up for about 2 hours and I still cannot get into gear to do anything. I have a college assignment I have to work on, laundry to do, dishes to do, etc. etc. I've even laid back and took a little nap already, I just can't wake up!! I have no energy.
Of course with all my health problems, (diabetes, depression, anxiety,rheumatoid arthrites,chronic bronchitis, hypertension, sleep apnea and on and on) all the pills I take are overwhelming. By the time I get done swallowing them all, I have to go pee cause I've drank so much to get them all down.
I wish I could suggest someting for you to cope with the lack of energy, but if you find out something helpful, let me know, ok? I'll look thru the responses you get and maybe I'll find something. lol
[i]Happy MyLotting,
Char[/i]
I wish I could suggest someting for you to cope with the lack of energy, but if you find out something helpful, let me know, ok? I'll look thru the responses you get and maybe I'll find something. lol
[i]Happy MyLotting,
Char[/i]
3 people like this
@TessWhite (3146)
• United States
29 Jul 08
Thanks Char. I swear you and I have alot in common. I have some of the illnesses you listed, as well as some different ones. Tonight it dawned on my that tomorrow is the day they come to exchange my oxygen tank and my house is a mess. So tonight I started straightening at least and will try and tackle the floors first thing tomorrow before they come. I hope you feel better soon Char. Hugs, Tess.
2 people like this
@guybrush (4658)
• Australia
28 Jul 08
I'm so sorry to hear you have these hideous conditions, Tess. I am not familiar with them, but know a lady who has MS, and it's very hard for her on 'bad' days to feel motivated or do anything. One of my daughters was diagnosed with lupus several years ago, but so far she has only suffered from rashes, skin discolouration and occasional bouts of fatigue. It IS good to be able to put a name to the condition, but very frustrating to know medical science can do nothing to cure it forever - yet. It's a pity there is not more money put into medical research and less into war. Do you qualify for some home help, where someone can come and give you some cleaning time? In Australia we have such agencies - and people who qualify are at least able to have someone come for a few hours to clean bathrooms, kitchens and tidy up a bit - and also provide some moral support. I hope you have supportive family members who live close by.
3 people like this
@TessWhite (3146)
• United States
29 Jul 08
The only one I have locally is my partner. He is alot of help, but does work also. And he has his own health conditions that can sometimes limit him. I have considered getting someone in, but when you have pets not everyone wants to deal with muddy paw prints, spilled food and water dishes and fur on every surface. So, so far we've just muddled thru. I can understand how your friend and daughter feels. I too have a friend with MS, and another with Lupus. They aren't fun to deal with either.
2 people like this
@MaeTsuen (257)
• Philippines
29 Jul 08
o.0 thank you for the information at least we can be more aware right now... as for me i haven't heard of such sickness until now... and i hope i won't get such sickness in the future... =) and good luck to you, you can do it =) having that sickness... try eat more vegetables... balance diet not too much meat as meat.
