Hey again everyone, I posted here nearly a year ago, although I had to register a new account because I've forgotten the details :/
Anyway, this was the first post I made here about getting diagnosed with CFS: [url]http://www.healthboards.com/boards/showthread.php?t=339290[/url] (if you can be bothered to read the essay :P)
I guess I'll bring you all up to date on what's happened since then.
I went to see the specialist on the 5th of december last year, he confirmed that it's definately CFS I have, which in a way I was glad to hear since a lot of people seem to have trouble even getting diagnosed with it.
He didn't put me on any meds, instead he talked to me about how to deal with CFS and that I should start exercising lightly and gradually build it up back to "normal". So I took everything on board, went back home, tried it... didn't help at *all*. Even though it made me feel worse I carried on trying in hope that maybe it'd get better, but it never did.
So I went back to him late January (I think) and he did a couple of tests, one to double check my thyriod (which is still fine) and another to test my adrenaline gland. I never recieved a phone call to say anything was wrong (which he said he would do if there was anything to be concerned about) so naturally I waited for my next apointment with him to see where things would go from there.
Between apointments I heard news that a college friend of mine died in a car crash (found out on the 30th of march), so obviously I was pretty depressed and not really in the mood to talk to anyone or do anything. The day of my next apointment I was 'sposed to be going to the specialist, then ordering flowers for the funeral and then taking my dog to the vets (he'd been pretty ill for a while...). Despite knowing that that day was going to be a depressing day, I went to the appointment with high hopes that maybe he could sugguest something new or reffer me to another person that could help. Anyway, he made me see his assistant or whatever they're called, who blatently had no clue about CFS and talked to me as though I was some kid trying to get a day off school. Obviously I got annoyed that he was wasting my time and asked to see my actual CFS specialist. He eventually came along only to tell me something along the lines of "We've tried everything, there's nothing wrong with you, it's all in your head. You've just been in a mood for over a year now. Take some antidepressants." Then he literally left the room for me to "get over myself" I guess.
I hate to sound depressing and everything, but that was the worst day of my life :/ Not only had my CFS Specialist (if you could even call him that..) totally blown me off, proving that for the past year and a half all the running around getting tests, seeing different people was a *complete* waste of time, I had a friends death to cope with and when I took my dog to the vets he had to get put to sleep :/ And this was the day that I gave up.
Never before had I suffered depression until this happened, and since that appointment I went back to my GP to try those anti depressants he perscribed (Citalopram). While I was there, I mentioned that I had recently got depression and as soon as I said that word even he put my CFS down to it... which is funny since I had CFS over a year before feeling this way.
Today, I don't take anything, I don't see anyone, I try not to talk about it or even think about it although by no means can I get back to my "normal life" because I still can't overcome this disorder.
After alll that rambling I guess I'm saying I don't know where to go from here. I can't get reffered to anyone else since the specialist I saw is the only one in my area and the people that are sposed to be here to help think I'm full of it.
Don't get me wrong or anything, I *do* want to get better... I've just lost all hope and don't see the point in trying when all the people here are the same.
If there's anything anyone can sugguest, no matter how little it may be, please do tell me.
-Nakii (aka Nakisa)
P.S. I truely hope that no one has been through anything like I have, I wish you all the best in getting better.
I am new to this board and I read your message. I was lucky enough to be diagnosed by the Hunter Hopkins Clinic in Raleigh, NC. I had to travel and it was on a cash basis. However, returning to my home town and working with medicare, I am having trouble finding appropriate care. I have gone down hill as well. I am fully bed ridden and struggling to be happy. Through my sister, I just received a phone number of a support person in my area who has put me on the road to another GP who believes! They have a protocol in place for her and it is working for her, so there is hope for me. SO, DON'T GIVE UP. Go to the Center for Disease Control website and type in Chronic Fatigue Syndrome. It's there!!! They are working on it!! And there are many articles that will give you information to help yourself! No cures, just real information! Print what you want and take them to a good GP. I hung onto that for weeks! And then I found another option. So hang on! Good Luck and please know your not alone!
Oh my god I am so sorry that you had to go through an experience like that with a doctor! I have gone through the SAME situation a few times myself, and it is the most frustrating, humiliating, unbelievable situation a person that is SICK can go through. It disgusts me and angers me to no end that doctors EVERYWHERE are both unsympathetic AND uneducated on CFS. There are a few doctors out there who are willing to work with you and who are updated on the latest CFS news and research, but unfortunately they are few and far between.
The first thing that I want to say is to NOT give up. So many people on message boards have told me that I shouldn't be TOO confident about getting better someday because it will be a major letdown if I don't start feeling better, but I can't bring myself to accept the fact that I may not ever get over CFS. Many people say that I should just accept this illness, but I WILL NOT. Do people with cancer just ACCEPT cancer? No, they fight for their lives and they fight to get better. It's easier said than done, I know, since we lack so much energy.
I personally gave up almost completely on mainstream medicine after numerous horrible attempts with doctors, although I do keep my Primary Care Physician informed about what is going on so he can give me referrals if I need them. He is a pharmaceutical drug pusher that always tries to offer me antidepressants, but I usually just kindly reject them. I was lucky enough to find a FREE naturopathic medical clinic through the University of Bridgeport in Connecticut. I have an entire team of doctors (interns) who work with me. My naturopath only supplements according to deficiencies that show up in my bloodwork and does NOT try to sell me tons of herbs or miracle cures. FIRE any naturopath who does that. My naturopath does not promise a cure, but tries to alleviate my symptoms the best they can while they are still discovering the root cause of my illness. I only started seeing this naturopath a few months ago, so we haven't really made too much progress yet.
Since you said that you cannot get referred to a specialist in your area, is there any way you can contact a local CFS group (research online) to see who they can refer you to? I know that a doctor that isn't covered by your insurance plan can be quite expensive, and I don't know your financial situation, but it may be worth a try. Also, maybe you can contact university health centers in your area to see if they have a clinic (naturopathic or not) that you can go to? I totally understand how you feel when you say that you try not to think about your illness yet are still unable to get on with your normal life. Sometimes I would just rather not think about the illness either, and just exist. Although I am motivated to find the answers to my illlness, I will admit that there are periods of time in which I just need the time to myself without thinking about being sick.
There is an AWESOME and FREE CFS list that I subscribe to that I unfortunately cannot mention the name of on this site. Go to *********** and type in "CFS List Icors" and it is the first link. There is a tremendous amount of support with this list as well as a wealth of information. Good luck and I wish you all the best.
Hey again everyone, thanks a lot for the responces
lil-porridge - I guess I must have worded part of my essay wrong, lol. I've never expected a next day recovery, not since I realised it was CFS that I have, anyway I know for a fact that my diet really needs help, heh. It used to be pretty good but since Im tired all the time I don't ever feel like making an effort :/ I guess that's something that I should really work on huh? As for the caffene part, I drink loooots of tea and I don't think I could live without it, but if cutting down will make a difference it's something I'll definately give a go ^^ Thanks very much for taking the time to reply
merrijean - Thanks a lot for informing me about that website, I don't have the time at the moment to properly look into it as Im not at my own house right now, but that's something I'll definately spend a lot of time checking out ^^ And I'm really glad to hear that you're going in the right direction, keep us all updated on how that's working out for you, yea? And best of luck
GettingWellAgain - First of all I'd like to say how sorry I am that you've been through a simular experience with a doctor
I totally understand what you mean, there are many day where I feel like fighting till the very end if needs be but then there are other days where I look back and think "all that time that I've put in chasing people around, flooding my brain with information in hopes to get me on the right path and tiring myself out half to death by doing so... and I haven't got anywhere." which, as you can imagine, totally makes me want to take a back seat to life... and that's really not the way to think when you have CFS, at least it isn't in my opinion. Great to know that you're heading in the right direction, even if you haven't seen any improvements as of yet, I'm sure within time that will change
I agree with what you said about trying to find a local CFS group (haven't atempt to yet, but I will be doing . Another thing is that I'm from the UK, so naturally I want to stick to the NHS (..basically free medical care, if you didn't know already). Going private wouldn't bother me as such, the only problem is that I'm 20 with no job (duh) and no decent means of income (I get benefits but I doubt it'd be enough to cover for me going private). But I guess if I *can* find a local group then surely they'll be able to give me some more information on that kind of thing, eh? I can't say I know of any clincs that I could attend unless I were to travel a fair distance and even then I don't know what I'm really looking for lol. I don't know what types of doctors can be any use for helping with CFS patients. ALso, thank you for telling me about that mailing system, I've already signed up and checked out some of the information they have to offer - looks really indepth and, like i mentioned earlier, Im not at my own house at the minute so I'll look into it when I get the chance to
Thanks a lot again, for replying ^_^ Take care and all the best to everyone
I feel like I wrote that post!! I also have CFS and FM and feel like giving up..I have tried so many things to get better and have spent thousands of dollars on alternative doctors and supplements....anyways, I dont have any really great info but I did want to recommed a few things:
1. Have you had a sleep study done? Many CFS people have sleep apnea or very commonly, never fall into stage 3 or 4 sleep which is when the body repairs itself. If you never get a deep sleep,you will always feel tired, no matter how long you sleep (like me). I just had on sleep study one and am scheduled for one more.
2. Even if your thyroid tests are normal-that doesnt mean you dont have a thyroid problem!! I dont know if you do or not, but if your labs are normal but in the low range, you could still have hypothyroidism and benefit from thyroid meds. What was your T3, T4 and TSH (and the lab ranges?) Have you seen an endo?? You might have to see a couple before you find one who will be willing to work with you and thyroid meds...I am going through this now
3. CANDIDA. It is a hot topic and I suggest the book "Tired...so tired...and the yeast connection." Probiotics, garlic help candia (yeast overgrowth) and possibly a antifungals for a short while.
4. Magnesium, Calcium, Vitamin D
5. Infections?? Have you been checked for the many infections you may have??
wow that's terrible that a doctor did that. I went to a neurologist yesterday for pain and being tired all the time ( he said I might have fibromyalgia or something) my other doctor told me I have a cfs but doesnt know why.... any way my neurologist told me to "learn how to not be this way)... ( he also told me to go on antidepressants)..he looked at the cat scan of my head and said "it's normal if there's even a brain in there.).... I understand about going to drs and them telling you things like you just need to get over it....Hang in there you'll find help.
Cats - No, I've never had a sleep study done before, that's something I'll have to mention next time I see my GP. Just wondering, if you do find out (for example) that you don't fall into stage 3 or 4 sleep, what can they (the doctors/specialists) offer from there onwards, help-wise?
About my thyroid results, I don't know exactly what they are, they never told me the actual results just that there was a problem. All I know is that I had an underactive thyroid problem >_<' You also asked me if I've seen an "endo"? .. No idea what one is, lol.
I'll check out that CANDIDA thing that you mentioned too, sounds interesting ^^
Infections? Lol, what kind are you refering to? I've had everything checked in my bloods that I can, so unless you mean something that blood tests can't pick up on... ^^'
Thanks a lot for the help and take care
myhearthurts - Sorry that you seem to be getting a lot of trouble from your doctors too, and you're right in saying that I just need to deal with it and keep trying. Wish you the best of luck
It seems to be that chronic fatigue is more or less the murphys law of illness.
Since I got sick a year ago and since there has not been one thing that has gone right for me.
It seems that most doctors are just really uninformed about the fact that CFS even exists. I have a friend who for years now has always thought he was depressed when it turns out he has chronic fatigue but was missdiognosed. I even when to a world renowned sleep specialist who was compleatly unawhere that chronic fatigue even existed.
Since I got diognosed I have been compleatly unable to get anything done to graduate from high school, my girlfriend left me and told me to see a phychiatrist (how thoughtful) and I do not enjoy anything anymore to the extent that i used to be able too (at best now all I can get is a good distraction). So if it is any solace I know exactally what you are feeling right now because I too have only just recently become depressed from the thought of a joyless life full of pain that goes on every day indeffinetly.
I am hopeing that this depression is just due to the fact that it has been a whole year where I feel as if I haven't gotten a wink of sleep and that I will soon get my second wind and I hope this is the case with you as well.
so I hope that it helps to know that you aren't the only one having similar feelings and that there is always the hope that we will get better.
You are not alone. I went through about 10 doctors and one was just like that and made me so mad that I wrote him a nasty letter telling him he was incompetent. I am feeling so much better now that I found a decent doctor but he is following a "well known" treatment protocol, called the teitelbaum protocol. I'm surprised how many CFS patients do not know about it! Dr. Tietelbaum wrote a book called "From Fatigued to Fantastic" and it includes the protocol and a portion for your doctor in case you have one that is clueless. It tells the doctor what tests to take and what results warrant various supplements and medications. It's a step by step guide for both you and your doctor and it's amazing. It is also on the web, but i don't think we are supposed to post other websites here. Google it and you should find the official site to End Fatigue. Best of luck.