As most of you know mom, my brother and I all have had Chronic Fatigue Syndrome since 1988. One day my brother came down with “the flu”, then mom and then me. Since then we have never been well. I had a short lived remission when I was a senior in high school but it came back with a vengence (sp) when I went to be an exchange student in Sweden. I just got too sick and had to come home before I could attend college there.
Well, a very kind reader on Sunday sent me this article and then another sent me one this morning. (thank you Tammy and Betsy)
Here’s another video interview I found too.
It appears they have found the virus that causes this illness. Yeah!!! I admit, I’m not a sentimental person but I did have a tear or two reading it. For years people have thought we were just crazy and you begin to think that you are after awhile.
It’s funny because while I’m pregnant my CFS basically goes away but once I stop breastfeeding it comes back in full force. (hormones seem to make the illness worse for some reason) Well the last two weeks since I’ve been drying up from breastfeeding I have been so sick I can hardly do anything. A couple of evenings Mike has had to help prop me up so I could drink an Alka Seltzer and try and get some life back into me.
I have been so discouraged from my lack of energy and my lack of brain function that I have to say this just made my day (ok my lifetime!) to know that we are really sick and there is a reason why we feel like the walking dead most days.
BTW, I do believe that CFS and Fibromyalgia and two separate illnesses. I think they are related but mom and David only have CFS and I have both. When I’m pregnant my CFS all but goes away but my FM gets much worse (from lack of moving around while on bedrest).
So if you have CFS there is hope!!! Tawra
I just finished listening to the reports myself. We have heard for years if you drink this juice or take these herbs you will be cured. At first we were so desperate we tried everything but as the years passed we became a little wiser.
Every time a person would e mail us and say I have found the cure, we learned to take it with a grain of salt. I always said that when a cure is found it will be all over the news and not just odd people here and there. I said when it makes the newspapers and TV big time we know the cure is probably found.
After years of disappointments I am trying not to get too excited but I finally think that day has come. It is so weird because I’m not even sure what to feel. I have battled not only my illness all this time but other people and their not understanding or saying it is all in our head - most of our family members, all of our doctors- it is like I have had a sword and shield fighting, fighting and fighting and now there is no enemy. I can rest.
If I feel this way just getting the news of what it is what will it be like to have my illness under control. I’m not even sure how to react. I still need to be careful because the last time I got this excited I made my CFS flare up and got really sick. HA!HA! Imagine one day soon I can get excited and happy and not worry about the consequences afterwards (being sick for the next couple of days). Too cool!!!
Jill
Tawra, thank you for this post. I am suffering with fibromyalgia, and it really helps to have some support out there for what you are going through. I had a check up two weeks ago and my dr. advised me not to go back to work full time. I am taking a class to become a certified pharmacy tech. and she said that this will be far too stressful for me. She started me on Lyrica, and it seems to be helping. So I do get down in the dumps at times, as I am sure you and your mom do. I really don’t know how you manage with a baby!
The thing I find the hardest is having an active mind that wants to accomplish so much, and a body that can’t go along with what the mind wants! Yesterday morning I got dressed, planning to go to the post office and then into Publix to pick up a couple of things. I stood in the post office line for about 5 minutes, which felt like torture, mailed my letters, got in the car and came home, straight to the couch. I could not have walked through Publix if my life depended on it. This morning I got up at 8:00, and was back in bed for a nap at 10:00. Some days are much better. I’m sure you have your ups and downs as well. I really do appreciate that you are so willing to talk about this on your blog. Thanks, Rachel
One step closer to a cure!
I wonder if that’s what my mom has been struggling with. There was a long time that she couldn’t get through the day without an afternoon nap. I don’t think she’s completely better now, just a little improved. The drs couldn’t find anything wrong.
Wow, that’s hopeful news! I feel for you. I have several auto-immune diseases and having your immune system disordered is the worst!It affects your whole body and mind in unimaginable ways.
I’ve had CFS and FM for 20 years. I’m almost afraid to hope they’ve found the real cause. I’ve been disappointed so many times before!
I don’t think people can understand how much we suffer unless they’ve had the illness. It’s so frustrating.
Dear Tawra,
Wow! They may have found what is causing CFS and Fibro!!! Wouldnt that be wonderful, I have been a sufferer for over 19 years!!!! I would love to have the energy to do things!!!! I have a wonderful and loving husband and he helps with so much, I couldnt do it without him!. I truly appreciate all you do by writing about CFS/Fibro! Take care of yourself and your family and hang in there!!!!!!!!!!!
Thank You SO MUCH, Lord!!!!!
I am SOOOOOOOOOOOOOO excited for you guys!!!!! What a HUGE answer to so many years of praying……I will keep on praying until these conditions leave you all alone COMPLETELY!!!!
Hi!
I don’t know much about what you are dealing with-I just know I hear an awful lot about how people are having a lot of relief of their symptoms with the 15 minute exercise program I do called T-tapp. It is really interesting, so I thought you might like to check it out. You can go to Teresa Tapp’s website and read all about it. http://www.t-tapp.com
This news is very exciting. I have severe fibromyalgia and most days it is very hard for me to move. Maybe someday they will find the cause for it. At least the medical community is slowly coming around to admit that CFS and fibromyalgia are real conditions and not “all in our head”.
Hi,
I know how you feel. I am 59 and have been dealing with everything you have, plus migraines, exczema, a muscle disease and restless leg. In other words, it hurts to stand up, sit down and walk. But, you just have to keep going. You find a hobby that requires sitting, and do it while you sit; another that requires walking and do it when you can walk, and when you can do neither - you try to read. Don’t give up. Stopping your life lets the diseases win. Only concentrate on what you can still do, whatever that is. Do it.
Hello everyone - I don’t know if any of you have heard of Celiac Sprue but it is a disease where people are gluten intolerant. Gluten is Wheat, Rye, Barley and Oats. CD is associated with over 200 diseases and some of the top ones include any autoimmune disease, diabetes, fibromyalgia, depression, cancer, thyroid disease, ahlzheimers, any thing to do with your colon (i.e. diverticulitis, diverticulosis, Chron’s etc.) Reading this blog here has caused me to submit some information that I believe would be of help to ALL of you. First you need to read the book called Dangerous Grains. You can google it and purchase it for about $10.00. I have gluten sensitivity and found out about 2 years ago. Since I have been on a gluten free diet I have lost weight, and feel extremely better than before. I didn’t think i felt bad until i went on the diet. Both my husband and I have it and we both eat a gluten free diet. It is certainly doable people just have to make their mind up they are going to do it. The results are amazing. You can be tested in various ways, (one - is a blood test, i don’t recommend this because it can give you a false negative, two - you can order the stool test online and do it in the confort of your own home. The website is enterolab.com. in this website it will explain the various tests and what you can expect. The third way is to go to your doctor and have a biopsy taken of your small intestine). If you elect to do a blood test and it comes back negative, i would suggest you try the diet for 8 weeks and see how much better you feel. I wish you all the best of luck. If you want more information just type in Celiac Sprue or Gluten Intolerance. There are several websites to read up on and also several websites to get great recipes etc…
I too have fibro and CFS. Must warn the people that are taking Lyrica. First of all when I first started taking it I thought that I had died and gone to heaven but then after a few months I was so tired and rummy. My pulmonologist told me to cut down on the Lyrica by half. I didn’t even ask him. I was taking 4 pills in a 24 hour period. He said that Lyrica is great but makes the person so very tired. He is right!! I now take 2 a day in the winter and 1 a day in the summer. I hurt more in the cold weather, I live in Michigan, than the warmer weather. Humidity gets me too. I have to take a nap in the afternoon. I cannot sleep until about 12 am, no not from taking a nap, so I must take a nap in the afternoon. I also have an electric blanket that helps a lot. Good luck to all and thanks Tawra.
Hello again - I just read the post on restless leg syndrome and that is another disease that is associated with Celiac Sprue or Gluten Sensitivity. Please everyone I urge you to check into this. I truly believe that it would be worth your while. I know several people that have had wonderful results with this diet. There are lots of support groups depending on your area. I am part of one where i live (it’s in rural kansas) so if you search enough I am sure you will be able to find one.
Tawra,
Like you, I got CFS when I was a teenager (right after a bout with mono), and have now had it over half my life (I’m 39). I am excited about this news, but I guess you could say I’m cautiously excited. It would be so nice to be able to point to something concrete and say this is what I have and this is what causes it! But before I let myself get too excited, I want to know it’s for real first. I look forward with you to hearing more!
God Bless, Jenni
After reading your post and all the replies, I am wondering if so many people who think they suffer from depression are really suffering from CFS. My mom always needed a nap. I would get so frustrated with her. I blamed it on depression. What if it wasn’t? I used to need alot of sleep. I still do, but I can go without a midday nap most of the time since I started taking a b-complex.
Anyone have any thoughts on this?
Jen, oddly enough with CFS, I or Tawra don’t take naps very well. People assume we want to do nothing but sleep all the time but the opposite is true.That is part of the problem. We can’t sleep whether during the day or at night. We mostly end up just sitting or laying like a vegetable because our muscles often are to weak to hold us up even in a sitting position.
Now having said that we did have a sleeping problem the first few months when we got sick. But we didn’t just take a nap. I would sleep and maybe wake up 12 hours later just enough to go to the bathroom and go right back to sleep for another 12 hours.
Being tired (but not always sleepy) is only one symptom of many other even worse ones of CFS. You also have awful pain with it that you can’t describe. I have been told time and time again by doctors that I have an unbelievably high pain tolerance but the pain I felt when I first became ill would reduce me to tears.
As far as your mom needing a nap and you thinking it was just her being depressed, I’m afraid so many people do wrongly judge others and think they are depressed, lazy or just need to get a grip. Often even doctors just automatically say some one is suffering with depression without checking all of the physical areas first.
There are people who do suffer from depression and do need help and sometimes even medication because of a chemical imbalance but I’m afraid more times then not a lot of people are misunderstood or misdiagnosed and can have something else that could be easily treated.
A lot of people too think they have CFS because they are tired all the time but more times then not they have something else. Tawra and I were accepted on to a large study the CDC was having of CFS and of 500 people who had been told by their doctors they had CFS only 80 were picked for the program and thought to really have it.
It is so hard for healthy people especially ones who are rarely sick themselves to understand others who are ill. We all have different genetic make ups and some people’s genes just cause them to be more ill then others and it can’t always be helped.
Hopes this helps some,
Jill
Dear Jill and Tawra
Thank you so much for the further information regarding CFS. I, too, can’t sleep at night and am so tired during the day that sometimes I have to lay down at work. It really affects my day but I do’t know what else to do. Also, like the comment above, I have a list of things to do but the body is just not willing especially in the afternoon or evening. I have been to the doctor and told I needed mental health help and one doctor flat out told me that she “does not believe in CFS, it’s a cop-out for lazy people.” I was surprised at both of these responses. So I have just tried to work around it as best as I can but it is very frustrating. Please keep the information coming on CFS (and fybromalgia-my sister has been diagnoised with it.) Thank you so much! Margaret
Ever wonder
Why people let this disease take over their lives.
I don’t think it is on purpose, just happens sometimes.
We wake up one morning with aches and pains. Then with each waking they seem to stay.
When we can take it no longer we go to the pros and get told to ignore it.
We go through aspirins like candies, then tranqs till the world passes us by and we don’t even know it.
We lose things, one after another. Our friends our lovers and finally ourselves.
We try for a time to fight for control, but slowly that passes the dd is out of control. It rules our pleasures it rules our pain. We don’t know how it did this it just happened one day.
We slide down hill with our packets of pills and hope that the bottom will not be more of the same. What can we do to regain a bit of ourselves?
No one has the answer to that, who will tell.
We have no consentration, our memories are hell. Maybe that is good since we won’t remember how bad or how good we felt, so long ago
before this dd went out of control.
I wish I didn’t have this fibro and pain. I am tired of it all and I know you feel the same.
But what can we do to find a cure. Keep going to doctors and more of the same.
We try snake oil, and bee stings, and all sorts of yucky stuff. We could probably have a world tour on the money we spent on the stuff.
So take each day a step at a time. If the hill is real steep keep trying to climb. When we get to the top shout out for joy. They found out what
causes this and now may find a cure. The slide on the other side will be so much fun after the work we have done.
Oct 11 2002
Margo, I have both fibro and CFS one dr. asked me how much I drank and when I told him 4 glasses of water 3 of milk coke and coffee he leaned forward and said quietly that he was my dr. and I could tell him honestly. I still didn’t understand so he asked me how much alcohol I drank. I said a glass on our anniversary and maybe a glass at Christmas but rarely and only wine. He called me a liar and said when I was willing to stop drinking I would feel better.
So you are definetly not alone with dealing with the non-believers.
I had a CFS relapse that lasted 3 months from June until Oct. of this year. I say 3 months because they were the worse. I could not walk across the room without holding onto furniture and the stairs nearly killed me. I am just glad that my husband was understanding and took on quite a bit of the cleaning and didn’t mind frozen convenience meals. I wouldn’t trust him to cook so I managed that.
The hardest was my son brought his new wife home when they were here from China and I sure was not at my best for meeting her but with his help it seemed to go ok.
I am still fighting with drs. on the best way to treat patients with fibro and cf and some days I feel that I have won at least a small skirmish. People in my small town are now being taken seriously when they complain about the pain and the fatigue education is the key even for the doctors.
I had read a couple of years ago the idea that CFS was caused by a virus. My girlfriend came down with CFS back then, and fortunately, her dr was all over this new info. The sad part is, the virus is not really ‘curable.’ But it at least gives them something to work with in terms of a verifiable disease and not just in our heads.
just read an article and this is a quote of what the writer thinks.
“Anyway, our old neighbour was a pip. She was a former Toronto street person (according to her) turned front-yard fibromyalgia victim. That’s the condition where your “illness” acts up only when you’re in your front yard where the public can see you, requiring the need of your walker.”
we need to get out more information to the non believers. but I have been trying to do that for years and I am getting ready to give up.
I hurt so bad today that whenever I move I have to fight the tears.
I can’t tell the dr. or he will say I am depressed.
I am not depressed just so mad at the world at my body and I have no where to turn.
If anyone has some suggestions to get out of the mood I am in please say so.
I really need it today.
luv and hugs.