I've been complaining to my drs about extreme fatigue for over 8 years; no one can come up with a diagnosis. Blood work is fine (almost diagnosed w/lupus but since I didn't have the "rash," there was no clinical diagnosis). I do have an aortic aneurysm and aortic regurgitation that I'm being monitored for. I'm also on various medications, but I had the fatigue WAY before I started taking the medications. It's to the point now where I can't stand it anymore; I'm on the verge of losing my job I've had for 20 years because I call in sick so much; it's next to impossible to get up in the morning. I'm so weak and tired at times, I can't even move; I can't focus my eyes. It's an awful, awful feeling. It puts me in tears and thinking about ending my life; I just can't handle it anymore. Dr. has me on Adderall (adderrall) for it, but that doesn't help either. I've tried various meds, none of which help me. I'm only 43 and a recent widow with a 14-year-old son; he is the only thing keeping me going at this point. I'm DESPERATE; can anyone shed some light? Thank you!
Hi ! I'm glad you are here. I need some additional information from you.... if you don't mind. You say that you are weak and fatigued, but do you have any other symptoms ? If so, list them all (even if there are 100... LOL!)
OK, you asked for it LOL (diagnoses, symptoms, current meds):
1. Huntington’s Disease (take meds for depression).
2. Aortic regurgitation.
3. Aortic aneurysm (4.2 cm).
4. High blood pressure (taking meds.)
5. High cholesterol (supposed to be taking meds, but don’t).
6. Pulmonary embolism September 2005.
7. Urnal (?sp) nerve damage in left arm/hand.
• Extreme exhaustion (8-9 years):
- affects work/personal life;
- miss several days of work;
- only shower once a week because I always fall back into a heavy sleep;
- used to be quite active, but just don’t have energy anymore (exhausted after grocery shopping);
- used to be an immaculate housekeeper, my house is dirty;
- spent $5k on a vacation of a lifetime, and spent half of the time in the room.
• Left shoulder/arm “achy.”
• Electrical-feeling “shock” in left-side of neck, painful afterward.
• Severe cramping in feet at night, pain wakes me up, lasts for hours.
• Heat intolerance (head pours sweat (entire head soaked, runs down side of face), even when doing any shopping, activities very limited)).
. Night sweats (head/neck/chest -- every night).
• Shortness of breath.
• Constant sinus drainage since 11/2004.
• Short-term memory loss (can’t remember even the simplest of things (why I disciplined son, if I fed dog)).
• Trouble communicating (can’t remember the simplest of words; pause when just have to answer “yes” or “no” questions).
• Sleep disturbance (wake up in middle of night and toss/turn the remainder of night).
• Extremely clumsy.
• Extremely irritable (not quite as bad since on Prozac).
• Hearing problems (stuffiness; ringing sometimes).
I've seen 12 doctors in the past 2 years; no one can help. The last one was an "alternative medicine" dr. (chiropractor who used various supplements). I spent $2600 on him in 2 months, and after taking 100's of vitamins and several appts, I felt absolutely no relief. But he did determine that I have "leaky gut syndrome," heavy toxic metals (including mercury), high potassium, low sodium, and body is not digesting foods properly (as well as other things, I can't remember). My GFR was 58 (borderline kidney failure), but dr said it didn't mean anything. I'm constantly thirsty as well. HELP!
Wow.... you have a complicated case. I can tell you that many of the symptoms you listed are very common in CFS patients and I can certainly relate.
I know that a high potassium level can be due to impaired kidney function. I have a friend who has abnormal kidney labs (and CFS) and the reason why her labs are abnormal is because of her CFS and the fact that treatment is adding additional stress on her organs. Also, patients who have CFS are also constantly thirsty, especially when their illness takes a turn for the worse.
I think that you are going to need to turn to the CFS experts for suggestions and guidance. I think they may be the only ones who will be able to tell you whether or not your symptoms could be due to CFS or your other conditions. I also think whatever treatment they put you on... they must follow you closely.
Check your inbox.... I'm going to be sending you a private message with info that can maybe help you get in touch with someone who can help you.
I meant to write this earlier, but had to find the link. High blood pressure is very rare in Chronic Fatigue Syndrome patients, but it can happen and according to Paul Cheney, Ph.D. --- it happens in less than 2% of CFS patients.
Dr. Cheney is another CFS expert (deals mostly with heart issues), that you may want to consider contacting. I'm sure if you google his name, you can find his contact info. If not... let me know and I will try to help.
Doesn't help that my family thinks I'm completely crazy and it's all in my head; believe me, I wish it were something I had control of, but I don't, absolutely NONE!! It's very very frustrating, and I have no life.
i hope you got my note that i sent you about 15 min. ago. i have exactly the same symptoms like you described ... like i said this tiredness and weakness it has to be more than cfs. i cant hardly take it either and yes it gets very old and i cry from time to time and i take meds for depression also... i really dont think its caused by that... for me anyway. but what is it .. is the question?!!! o ne of my friends also said are u sure its not in your head? well i wish it was! lol! i would not be typing this tonight if i was down.. i felt some what ok today,, but have slept on and off all day.
yes i would say that it is serious also... but some of the doctors that i have went to doesnt seem to think that i should have anything to complain about. i also have copd and cong.heart failure and my life is awful and i know that it can be worse but i still hate being like this. its so hard for me to move and to get around anymore and i just wonder what its going to be like a few years from now ... u know?! i have had no doctor tell me that chronic fatigue syndrome is that serious and i appreciate the info and will look into it...thanks!
I missed work again yesterday because of it!!! I just can't take it anymore. Today, I'm still very tired, but don't have the weakness like I did yesterday; I couldn't even move, didn't get out of bed until 2:30 pm and then went right back to bed. catwoman, if you get a diagnosis, please let me know ASAP LOL. I was on Coumadin for about 6 months after the PE, but they took me off of it because it had reabsorbed. I get chest CT's every 6 months (now every year) to check.
It breaks my heart to read your post. I totally understand your frustration as I have been seeing doctors on and off for 3 years and am getting nowhere. However, from everything you wrote, I do believe you have some depression and you have every reason to have it, believe me. I get depressed with all the pain/fatigue I have in my life. I think your first step should be going back to the doctor that prescribed your anti-depressant and tell him the one you are on isn't working. It takes awhile sometimes to find the right one. Also, if you can, you need to find a doctor in your area that deals with CFS. As PlateletGal says, it is a serious diagnosis. I think she said she was sending you links.
I have dealt with the same thing...doctors brushing off the CFS diagnosis as nothing and in my head. This forum has been a godsend for information and support. You have alot going on healthwise and being a recent widow too. If you have any means to get counseling, you should do that too, so you can talk all of this out. I am sure you are overwhelmed with everything. Very understandable.
Let us know how you are doing, ok?
Big hugs for you!
Thanks Nick299; I have tried Provigil; it didn't work for me either. I have a long list of meds I've tried, none of which help with the fatigue. I've tried various antidepressants as well. As I've mentioned to catwoman, my last dr. diagnosed me with mitochondria issues, cells not regenerating, metabolic disorder, and he told me my light is on 24/7, my battery isn't recharging. I'm going to try a supplement recommended by Dr. Garth Nicolson who forwarded me some interesting information regarding these issues. This supplement helps 99% of people with moderate to severe fatigue in 4-8 weeks; I've tried everything else, I guess it wouldn't hurt to try this. I'm hopeful. Keep your fingers crossed for me :) Thanks everyone!
Antidepressants may help because sometimes they can help with fatigue and pain, but in all honesty you have enough illlnesses for the conditions alone to be the cause of your tiredness. On top of this, you are caring for you son. You deserve the greatest respect for your efforts to cope with all this. It's no wonder you are finding everything so difficult. It sounds as if you need some real support from your doctor and maybe social services. If you are not already applying for disability benefits (if they are available in your country), then I would advise doing that. Talk to your doctor about taking a specific set time out of work. If your firm has a sickness policy that will pay you for time off for a while, it might be better to do this than take too many odd days. Your firm can manage a definite time out better. Others may be able to suggest drugs that can help or alternative treatments - I hope so. This is a time to pull in all the support you can get from friends, family and professionals. Maybe if you get some financial and social support, you won't feel under such pressure. I wish you all the best, I've been in a similar situation myself.
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