another newbie to the CFS board: struggling to deal with debilitating fatigue

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skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 3079
   Posted 7/28/2013 9:31 PM (GMT -7)   
Hi All,

This will also be my first post here on the chronic fatigue syndrome board. I usually post on the chronic pain board (I have chronic severe eye pain secondary to a nasty injury I suffered years ago), but I haven't even been posting there lately, because I have barely even had the energy to turn on my computer, let alone read, write, and reply to posts. This is a big effort for me, but I'm desperate.

Fatigue is nothing new to me, I've been dealing with some form of chronic fatigue for the past 10 yrs or so. However, the older I get, the worse the fatigue has become, and for the past 5 yrs, it has significantly impacted my life.

I am currently in the midst of my worst "episode" of fatigue yet. Things started going down hill in March. I don't know what changed/set me off. I routinely only get 2 - 4 hrs of broken sleep a night. I've had major sleep problems for my entire life, and have worked with a sleep dr, who diagnosed me with some kind of circadian rhythm disorder. In addition, I am a veterinary student, and so I am constantly under enormous amounts of stress from school. But none of this is new.

By May, my fatigue got so bad that I almost had to postpone my exams. I started feeling faint when I would stand up, and had trouble walking from room to room in my house, let alone up a flight of stairs. When I was younger I was a high level athlete, but was forced to stop due to injuries. However, since then, I had still maintained a very active lifestyle. When this began in March, I was in the best physical shape that I had been in in several years.

Even worse than the physical fatigue, is the cognitive manifestation. I am just so exhausted all the time. The only way to describe it is that it feels like my body is "shutting down" and I am powerless to stop it. I feel like a prisoner in my own body.

I have been home for the summer, and am extremely concerned and scared about returning to school in just under 3 wks. Whenever I am not working, I am in bed. Although I have difficulty sleeping at night, it is a bit easier for me to sleep during the day. I hate doing it, but there isn't much else that I can do. I feel like I have no control over my body. Even if I sleep for 5 hrs during the day, I usually wake up feeling no better than I did before I slept. And if by chance I do feel somewhat better, I'm lucky if it lasts for 30 minutes before I just cannot function again. It's terrifying. I feel like my quality of life right now is a 1 out of 10 at best.

I have had major depression issues for a long time, but my depression was more or less under control when this all started. I do feel like it has gotten worse over the last few months, but I feel like the depression is due to the fatigue/my inability to function, vs the depression being the primary cause of the fatigue.

I swear to God that there is something physiologically wrong with me, but every doctor I have been to, and every test that I have had done has provided no answers or solutions. Likewise, alternative techniques like acupuncture and craniosacral work have only ever been minimally helpful at best. Stimulants do nothing for me -- I've been on numerous different ones, and at high doses, and I get absolutely no benefit from any of them. Likewise, sleep aids do not work for me, and many other medications as well, including pain medications and antidepressants. We do know that I have a genetic liver condition that prevents me from metabolizing many (if not most) drugs. But even those that I can supposedly metabolize yield no response.

I recently saw a new doctor, a fairly well known MD who practices integrate medicine. Like everyone else, he characterized my situation as "extremely challenging," and didn't have any great insights. It was extremely disappointing. Most of what he suggested, I have already tried over the years & it didn't work. He does think that I have "some kind" of chronic fatigue syndrome that modern medicine just can't diagnose (it's probably at the cellular level). I don't fit the standard CFS patient as I understand it, because I do not have any other periodic flu like symptoms, etc. We are going to try IV vitamin infusions (Meyer's cocktail) once a week until I go back to school, beginning this week. However, we're more doing this because we (my mom and I) requested it, versus him suggesting it. He isn't sure that it will help, or that any benefit I derive from it will last longer than a couple of days, but he did agree that it would be worth a try.

Anyways, I'm truly at my wits end. I just feel so horrible, and have no quality of life. I feel like I may as well be 85, not 25, and am very scared that I will have to drop out of school for good because of this extreme, debilitating fatigue. I guess I was just hoping that someone here might have some insight or suggestions of what else I could do to fight this fatigue. That and support, anyway. My only other thought is chronic lyme disease (although my last titer -- several years ago -- was negative, I've had lyme in the past, and live in an area where lyme and other tick borne diseases are rampant), but I know that that is a controversial subject and difficult beast to treat as well...

Skeye

Post Edited (skeye) : 7/28/2013 10:35:36 PM (GMT-6)


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25343
   Posted 7/28/2013 9:55 PM (GMT -7)   
Skeye,

Your post describes many of the same aspects of my CF situation. Glad you decided to come here too, like I did today, and hoping we both can get to know the folks here and get some advice.

Like you, I don't have flu symptoms, etc. But I was officially diagnosed by my original oncologist back in 2000, my PCP of more than 15 years, and my current oncologist.

The biggest difference in our two biographies, is that you are 25 and I am 61. I at least made it till I was
47 before dealing with any of this. You got a lot of life left in you at your age, and I sincerely hope you can find some sizable improvements to your QOL.

David
Age: 60, 56 at PC dx, PSA 16.3
3rd Biopsy: 9/8 7 of 7 Positive, 40-90%, 4+3
Open RP: 11/8, Catheter in 63 days
Path Rpt: 3+4, pT2c, 42g, 20% tumor, 1 pos margin
Incontinence & ED: None
Surgery Failed, recurrence within 9 months
Salvage Radiation 10/9-11/9, SRT failed within 9 months, PSA: Too High
Spent total of 1 ½ years on 21 catheters, Ileal Conduit Surgery 9/10,
7 other PC-related surgeries 2009-2012

skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 3079
   Posted 7/28/2013 10:34 PM (GMT -7)   
Thanks, David. I posted on the lyme disease board tonight to. I just don't know what else to do. I'm scared. I don't see how I am possibly going to be able to get through school the way I am right now. Because I took that year off last year for other health problems, I doubt that the school would let me take more time off. I can't keep doing this "go to school for a semester, take a year off, go to school for a semester, take a year off" thing. It's essentially all or nothing from this point on...

Skeye

ladybugdreams
Veteran Member


Date Joined Jun 2008
Total Posts : 726
   Posted 7/29/2013 12:06 AM (GMT -7)   
Skeye, hi, it is nice to meet you, although I am sorry for the circumstances. Like you I went to quite a few dr's that could find nothing wrong with me but I was just so exhausted I knew something was wrong. Don't give up keep trying to find what it is. CFS is a diagnosis of elimination. Everthing else has to be eliminated first, so hang in there & keep going. You do need to get tested for Lyme, it sounds like you need to rule that out. Have you been checked for EBV or Mono? The exhaustion & sleep issues sure do sound familiar to me. I have both of them with this illness but they can be symptoms of other illnesses too.

It seems like we are seeing more & more young people coming down with this & it is so sad. I was in my 50's before I got this, I had to quit my job & go on Social Security Disability. Being ill & trying to go to school is a huge challenge but I know some have been able to do this. Don't give up on your dream yet, it just may take some time to figure it out, so let yourself have that time, you don't have to make major decisions yet. You might have your Doctor refer you to a Rhuematologist, they seem to be the specialist in the area of CFS, autoimmune diseases & Fibro.

Having the problem you do with medications, you may try suppliments. I am not an expert on them but hopefully someone will be along who will know more. Melatonin is a possibility for sleep, I took it for several years & it helped me. CoQ10, Magnesium Malate & Vit D3 for energy. I eat 40 mg of 85% dark chocolate twice per day for energy & memory/cognitive problems, it has helped me immensely. I am not by any means well, but they each help me feel somewhat better. Sleep is so important & it would benefit you, quite a bit, if you found something to help you get into the healthful sleep you are missing out on. You are not getting into REM sleep & beyond to restorative sleep. Have you had a sleep study done? That may be something to look into.

Many gentle hugs, Denise
Fibromyalgia-dx'd: 2006, ME/CFS-dx'd: 2006, Holt-Oram Syndrome dx'd 1975, reduced lung capacity dx'd 2009, nasal allergies, food allergies, depression (lifetime problem) IBS, neuropathy in hips

I have 4 children & 7 grandchildren.

As apples of gold in silver carvings is a word spoken at the right time for it. Prov. 25:11

skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 3079
   Posted 7/29/2013 9:13 PM (GMT -7)   
Hi Denise,

Thank you so much for your kind words and advice! I've never been tested for EBV or Mono -- I'll have to do some research about those conditions. I know a bit about both diseases, but not enough to feel educated about them. I've not been to a rheumatologist recently, but I did see one once several years ago. However, I saw him more for my eyes than my fatigue issues. I was not impressed by that doc, so if I were to go see a rheumy again, I'd definitely want to find a different one.

I know that there are no easy answers, and everything is going to take time. I suppose it is just a matter of getting on the right track and using that time as efficiently as possible. School wise, I do have a time limitation of sorts. My strong suspicion is that I cannot take any more time off without losing my place in the program. I will have to talk to the student services people, but seeing as I have already taken a year off for other health reasons since starting veterinary school, I doubt that they'd let me take any more time off (even for legitimate reasons). At this point it is more or less "all or nothing."

I have tried multiple supplements/herbs in the past. I've yet to find anything really helpful. I cannot take melatonin because for whatever reason it causes me to have double vision the next day. It's rather bizarre. The new doc that I just saw started me on 200 mg of L-theonine at night. I haven't been on it long enough to say whether or not it is helping with the sleep, but I'm trying to keep my hopes up. I've used L-theonine for years with my dogs (routinely gave it to one dog during thunderstorms to calm her down, and all my dogs during very stressful situations, such as the night after a big move). It works great for the dogs, but this is the first time that I've ever taken it myself.

I've never actually had a formal sleep study done, although that is something that we (me and several of my docs) have talked about many times in the past. I did have one study done (I forget the name of it, but I basically had to wear a special accelerometer for 2 wks), but it was not a formal sleep study. The reason we decided against a formal sleep study in the past was 1) money, and 2) my sleep doc didn't think that it would provide much insight based on the symptoms I described & my history (ie. things like sleep apnea do not fit my symptoms/history). However, we are at the point now where we are probably going to go ahead and do one anyways. That was one of the things that the new doc really wanted me to do. The question is whether or not I will be able to get it done before I go back to school. My next couple weeks are extremely busy, and it may not be possible to find a time that works for both me and the hospital... The thought of a sleep study also creeps me out. I know that I need to do it, but I have a lot of anxiety, and it really bothers me that people will be watching me sleep. I also have an irrational fear that I 1) will not sleep at all & thus the study will be worthless or have to be repeated, or 2) will get the best night's sleep I've ever had & they will find nothing wrong... Ridiculous thoughts, right?! I know that, yet it still scares me!

Anyways, it is all worth it if it can provide me and my docs with some answers/insight as to how to best approach my treatment. We'll see what happens. When I saw the doc last week, I was told that the sleep lab would call me, and for me to wait for their call/not call them myself. However, due to my limited time frame, if I do not hear from them by the middle of this week, I will give them a call and find out what is going on.

Thanks again for your support and advice! I really do appreciate it. It is nice to know that I am not alone in this fight!

Skeye

kayla33
Regular Member


Date Joined Jul 2013
Total Posts : 86
   Posted 7/31/2013 7:39 AM (GMT -7)   
Skeye,

When you had Lyme in the past, what blood tests did you have to confirm that, and were any coinfections positive?

Lyme can lead to thyoid or adrenal problems. Adrenal and thyroid problems can cause CFS. These should be tested regularly.

As Denise / jewelylady said, you need to also add EBV testing to the list.
/
Newly registered contributer/member, but long time lurker/reader.
Full time researcher and freelance writer.
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