No one responded to my message about regression...although people have read it...
I'm feeling totally hopeless. I've been dealing with Chronic Fatigue for 9+ years. I am 37 years old. I'd gotten to the point where I was doing much better - I'd say even 75% recovered. I've gotten sick over the last month and am back to ground zero. I'm probably going to have to quit my job, my marriage is strained because I don't know how to be sick and be with someone else - I did it on m own last time. I just laid around for years. I can't do that in a new marriage. I am exhausted, weak as can be, depressed, have no capacity to move at all (going up one flight of stairs does me in), shortness of breath, etc. I don't know if I can live like this. I don't want to live like this. We were going to start a family, and now I can barely function. I feel like I want to die. I've been through this before - and I just don't think I can be this sick again for 5+ years.
I'm terrified and devastated. No one understands - they all just think I'm depressed. I don't know what to do.
So So sorry to hear you are feeling so icky...I know it is more than icky, stomped on..How does your husband feel about you being ill? Did he see you ill before you got married?? Did you explain it to him?? I was also so sick that I couldn't function. I left my sweetie for a year..and then we got back together..some men like mine don't care if you are sick..they will love you anyway you are..Have you two really sat down and talked about this? Being alone isn't really the right anwer, even though I do understand how you are feeling..
Blue I posted on here about "Cure for FM and CFS." I had lyme disease and was told I had these two illnesses also..which boy they all have the same sypmtoms..I feel ALOT of people are mis-diagnoised with having these and having lyme really instead or SOME KIND OF FLIPPIN BACTERIA that hasn't been caught yet...After I was treated for lyme years and years...I was still feeling funky...yes I had the Epstein Barr virus, cytomeglovirus all of those things they say cause the Chroni Fatigue ...WEll my dear I was put on 4 more different types of antibiotics and was told that the levels for the E.B. and Cytomeglovirus would go down...Well I am living proof that they did....I have been ill for oh boy 15 or so years...Now I am almost 51 and have the old age crap...hmmm...wonder if there is something I can do for that...LOL...Of course you are depressed...I don't think I have ever seen a HAPPY SICK PERSON...haha...are we suppose to go around and say...YIPPIE I AM SICK ....no what i mean...Please do some research and read the lyme board if you haven't already, read the post that I did about Dr. STratton...read about his studies...It is pretty amazing...can't tell me that allllllll of these people are sick IN THE HEAD with the same symptoms...there are reasons...try to keep your chin up...keep looking for those answers...nothing wrong with having bad days..Like to see healthy people to have a good day every day...
Prayers to you..
I agree with Gemeni Girl, Get tested for Lymes, especially with the air hunger symptom. If you do so, though, make sure the blood is sent to IgeneX Lab.
I think we all understand exactly how you feel. Does your fiancee understand CFS? If not, I would educate him. I think one of the worst things about the illness is not having the understanding of our loved ones.
The other suggestion I would make is to try to find a doctor or alternative practitioner who truly understands CFS. They do exist, just hard to find. You could go to the Lyme board here and check out the stickys at the top. There are authentic practitioners listed all over the US, so likely you could find one in your area. Many people now consider CFS to be a symptom of Lyme so many practitioners treat them as one thing; therefore, any doc you find there would probably be appropriate for you.
I had CFS for 14 years (with all the symptoms you describe ... and more) before getting tested at a reputable lab for Lyme and came up "positive." Now that the problem is more clearly defined, treatment protocols have been initiated.
Whatever you decide I wish you all the best. Don't despair, though, or that added stress will only exacerbate your symptoms. There is hope. Hang in there. Also, you might want to do some research on Lyme and there are many good books out there as well. It is now thought that many illnesses, such as MS, ALS, Fibro, CFS, etc. are actually Lyme.
I am so sorry to hear about your suffering. I do understand how difficult it is, especially when there is someone else that your illness is affecting so much. While there may be some other causes for your fatigue, it is common for CFIDS patients to also have a hypothyroid problem caused by either true hypothyroidism or a conversion problem--not converting T4 to T3 or converting T4 to Reverse T3. It is very important that you find an endocrinologist who will test you using a TRH, not a TSH, test, and will also check your conversion functions. If they have experience working with CFIDS patients, that is a huge bonus.
Next, I will tell you that there is an article on the web that you should look for:
IS GLUTATHIONE DEPLETION
AN IMPORTANT PART OF THE
CHRONIC FATIGUE SYNDROME?
Richard A. Van Konynenburg, Ph.D.
I am currently on the Glutathione/ATP IM injections once weekly (along with B-12) that this article describes. I have only had the injection twice now, but I already feel like a new person. In addition, I am going to be starting L-Carnatine 1 gram 3 times daily, Ginko Biloba, Co-Q10, Siberian Gensing, something called ENADA (NADH) 10 MG daily, and a big-time multi vitamin and mineral, heavy on the B vitamins. I have cut my coffee cunsumption in half, increased my water intake, and do cardio on a peddler--upper and lower body, gentle stretches--entire body, and strengthening and stablization exercises--a program developed for me by a therapist for my back and neck, but works equally well with the CFIDS and FMS.
In addition to the above, my pain management doctor has me on a good combination of pain medicines and muscle relaxers and recently put me on an antidepressant. You see, the pain and the medicines alter our brain chemistry, but I didn't know that before. I was in pain. I was in denial that I was depressed because of the pain.
I also turned my lilfe over to God and told Him that I could not keep going. I didn't think I was going to make it and didn't know if I wanted to. I certainly didn't think my marriage was going to survive, but didn't care about that either. It was probably for the best anyway. I was just dragging my husband down with my problems. But God took over for me when I couldn't go anymore. When I gave up fighting and turned it over to Him and just believed Him to handle everything, my life and my health began to turn around. That's when the door opened for me to see this new doctor and get the diagnosis of CFIDS/FMS and start the injections.
Blue, I pray that what I have said will begin your healing and that something in what I have said will lead you to the answers that you seek.
I am so sorry that no one posted to your first message. I too have suffered with EBV and CFV for over ten years now. Some days are better than others. I completly agree with the other two posts. Find a good doctor and talk honestly with your husband. Find info from the web that you can give him to read so that he can better understand, which in turn should make him more supportive. I also wanted to suggest that you check out the depression forum on this web site. I post there frequently as I also suffer from depression, and the people on that site are wonderful. They always have a kind or encouraging word. Some days I need that more than anything.
Also, did anything stressful happen lately that might have made your symptoms worse? When I get very stressed my illness gets much, much worse.
do not feel hopeless, okay. cronic fatigue is an immune disease. it can cause an array of symtoms. i am not a dr., but i can feel your depression. i've gone through this in trying to figure out my own crazy symtoms for a year now. dont assume your life is over because you feel sick again. it could be something very simple. mine started with no traceable serotonin in my body. i was put on zoloft to help raise that level and boy what a change. my name is linda hope and many times i felt hopeless, but i will never give up in my further diagnosing because like i said, it could be something very simple. now i would see an endocrinologist to rule out autoimmune thyroidis. i have this and I HAVE TROUBLE WALKING MORE THAN 20 MINUTES. up stairs, a real workout. i sleep a LOT. you are not alone with these symtoms. people ARE here to help you. never give up. never give in. life is to sweet and valuable to throw away over feeling like crap. dont jump to thinking the worst, ok. sorry i sound like a mom scoulding. sincerely and god bless, lmhope
I also feel so down I could cry all the time so please keep posing thats what I am going to be doing, like Linda I also have Autoimmune thyroid and at this moment in time its like you dont have a live , that just how I feel. I have so many things going on with my health, I lost my dear mum 4 months ago about a month before she died I staretd to get a pain near my right rib, had gall bladder test come back ok, anyway when my mum died two days after i started to feel nausea and have real bad pains in my stomach, 4 months down the line ,and I am still having all the same problems but more to go with it. kidney pain, real bad headache, I have missed periods, all the time the doctors say its (stress) I know I am stressed who would'nt be.Ihad lots of blood tests now I am worried one has come back with high prolatin it could be a tumor like you I realy do feel hopeless I wish I could be of some help just come in to say your not alone try to keep ypur chin up.
take care ...Mandy
hello mandy, what tests have you had done? and have you had the tpo ab? also, with auto/thry you can have other autoimmune diseases. brain fog , whew. thats fun!! depression is a big part of all of this. it doesnt mean your nuts, just most likely missing some or having too many hormones. did your dr say anything about 24 hour urines? let me know. god bless, hang in there. lmhope
Hi hopelm thankyou for askng about how I am, I have had lots of blood test waiting for them to come back.Here in the U.K you could be half dieing wish is just how bad I am feeling, before they do anything, My doctor would like me to start on prozac I dont realy what to as I am low with this prolactin going on why cant they just sort that out its going to take 4 months for me to see endo at my hospital, I have been feeling so ill the nausea and stomach pain is driving me mad. whats tpo ab? with auto/thry mean??? Whats 24 urines the U.K NHS is crap.....
TAKE CARE ...Mandy
Hi hopelm yeah I do have Autoimmune thyroid (hashi's)
I just know that something else is going on with my body Ifeel so ill, I am in so much pain all the time.
How are you all feeling !!
this autoimmune stuff knockes me to my knees. my rheumatoid factor was elevated 27.7 normal <20. that was three months ago. since then i have been experiencing the worst pain ever. just shooting pain here and there. hands, wrists, feet, neck. headaches and blurred vision, swelling. with my thyroid antibioties going up, i'm sure other autoimmune diseases are involved and there are over 100. but i'm pretty positive besides having- hash's/autoimmune thy/ rheu. arth./ osteoarthritis, osteoporosis,- that i have fibromyalgia. although not considered an autoimmune disease, i have all the crazy symtoms. but with this autoimmune thyr., i have a thyroid full of nodules and a thyroid adenoma and adenoid adenoma. adenomas are not cancerous tumors, but no matter what, even if you feel like crap, be knowledgable. look up everything you can find on the web on autoimmune thyroiditis and what tests are necessary for proper diagnosing. now a days you have to be informed cause many dr's unfortunately are not or just dont care and would rather pass you on to another dr. then take the time to figure out a proper diagnosis and treatment. its sad but true. i'm on my 21 st. dr. visit since last may, 05 and have seen 11 dr's that i can recall. i'm 53, went through menopause 4 years ago and many of these dr.'s want to make their job easier by saying its hormones from menopause, take xanax, get lots of sleep. but after 4 years of no mensus ????? i have faught for a year now to be heard, kept copies of all my tests. i've lost my job, on disability that pays $800.00 a month ,which is just enough to pay for my cobra insurance, no bills. i had to cash in my 401 retirement to help pay bills. you bet i'm gonna scream over the mountain tops till someone listens and figures what all i have. i will never give up. i want to feel better, get some energy back and get on with my life... god bless all. lm hope
I am so sorry that you are having such a terrible time. I can really empathise. I also got sick just 6 months into a new marriage, at age 35, and have really battled with guilt. We too wanted to have a family. I have been sick for 5 years and I am probably the worst I have been - bed-ridden, depressed, in constant pain, and as an added bonus have put on 60 pounds in the last year. My husband and I are still holding out hope that I can find a way to heal and we can have a child, but time is running out. That said, I agree with a lot of the postings here...I think it is really important to talk to your sweetie, and believe what he/she says.
One other thing I would strongly add, as others have here...I was given a diagnosis of fibromyalgia and pretty much left it at that with that for 5 years. Only after a lot of reading did I realize that I should have had extensive tests before being given that diagnosis...I wasn't. It was more like - oh, you're in pain and I don't know why, so take pain meds for the rest of your life and exercise. Over the years I kept getting worse, and steadily faster. Last year I decided I really needed a new dr and tests, so I went to the university hospital nearest me. The difference in quality of dr's was amazing. I found a wonderful endocrinologist and rheumatologist who have helped figure out what is really going on with me - epstein barr, west nile, chronic fatigue, addison's disease, a spinal disease that I can't spell, and hashimoto's hypothyroidism. The upshot is I have discovered how important it is to have a full regimine of tests, and a really good team of dr's. Of course I am lucky that my husband has really good insurance...my heart goes out to others here who don't have that luxury.
Another example is a friend of mine - dx'd with CFS for last 5 years. Turns out she has Meniere's disease - an ear disease with symptoms that mimic CFS. So while I firmly believe CFS and fibro are real diseases, I think that it's important that they are only given after other things have been ruled out. Of course, you can have CFS and FMS in addition to other diseases...ain't that grand...
Some tests that I would really recommend - full hormone work-up, DHEA level testing, adrenal function testing, hashimoto's anti-body test, x-ray's and MRI's of any areas that hurt, lyme disease test, full rheumotologic work-up, endocrine work-up. And with these tests, I would ask for the most sensitive versions - some things don't show up on the more generalized tests, but will show up on specialized tests.
Blue, I don't know if any of this helps. I am so sorry for your suffering. You will be in my thoughts. Sometimes the only thing that gets me through is hanging onto the hope that things can change, and that they may change for the better, and I would hate to miss out on that life. But when you are suffering I know it can be hard to hold onto that hope.
I really hope things get better for you...
Oh sweety my heart goes out to you. I am a little in your boat right now, but only mentally not physically. My biggest fear besides suffacation, and clowns, is getting my life together now that I'm about 60%, just graduated college finally, anyways getting it back together and losing it all "again", yes it has happened to me before, 3X's before. I lost my nursing job, home, new car, and the most wonderful man I ever met. I have been single since then 6 years, after 5 year relationship. Whatever you do, DONOT push this man away, cause thats what I did, couldnt deal and he said he wouldnt leave me, he meant it. I felt like a child, he always ironed my clothes and made me bathe, drove me to appointments, he was extremley supportive, but I felt like I was dragging him down, or I would feel like he was moving on in life with out me, which felt worse sometimes. I wish I hadnt done that, he is still my bestfriend but wont even consider reconciliation, because I crushed him so bad by leaving him for no reason at all , now this advice is good if you have a supportive mate. We have to roll with the punches, its hard, and treatment may take awhile, but take it from a 3 timer, you need to do damage control at this point. When ever I get better I start over again, but a good thing for you is you have had this DX and know what it is, I was just DX last monday, it was frustrating, not knowing why this kept happening to me. They have so many meds for this DX, you have options, and it probably wont take as long as before. Please dont give up. I hope you feel better and soon, please keep us informed and come to us for support. ME
Hi, yes a thyroid problem could be the cause such as lack of T4 or T3 but the more likely scenario is that your liver is not performing and as a result your bloodstream is swamped with toxins. Without adequate bile flow to digest food and carry toxins from the liver you will feel terrible. To start off look at your diet and maybe take some digestive enzymes. Undigested food can cause a myriad of health problems such as fatigue.
Thyroid hormone production etc are all dependant on a fully functioning liver. Remember, the liver does not complain directly, unlike the stomach, and can work to keep you alive at 36% of it's potential. When you reach 35 % you get liver failure.