Chronic Fatigue Syndrome

[Meraki]

How do you fix this beast of an illness?

I was recently diagnosed with CFS and am now on the hunt for how to get this brutal illness under control so I can get my life back. I used to not really even believe in CFS, I had a friend who had it and I really thought she was just kind of lazy, stressed out and a bit of a hypochondriac - am I ever paying for my ignorance! I owe her and all of you who I thought were like that a HUGE apology.

Up until the summer of '08 I led a very active life. I was always into sports and travel and kind of just worked in between to finance my interests! In August of '08 I took a hiking/kayaking vacation, competed in mountain bike races, spent with friends at the cottage and worked lots of shifts in between. In September I got sick with a flu type virus that turned into a cold that turned into bronchitis. By November my energy was gone, I was sleeping all the time and my cognitive functioning went WAAAYYYY downhill. I went to the doc and after bloodwork was told I had Hashimoto's thyroiditis (hypothyroidism), given synthroid and told to expect to see 'my old self' come back in about 3 months. It didn't. Instead the cognitive issues continued and my memory and concentration were gone, the sleepiness remained and turned into a kind of fatigue that words can not describe (a combo of hungover, drugged and as though your body has been weighted with lead) and my muscles ache as though I ran a marathon without training and was hit by a truck on the way home). If I try and exercise, sometimes even a long walk can put me to sleep for hours. It has now been over a year of this. So see a couple more docs and they say CFS.

The hardest part in a way is that it comes and goes. I have usually 4-6 weeks of feeling this way and being non functional and then it is like a switch goes on and bam I am pretty much fine for 2-4 weeks. Then it switches off agon and the cycle repeats over and over and over. This makes life impossible - how can I plan anything or work when I never know when the switch will flip. I can't really say - I'll work hard for 3 weeks then I'm likely gonna need a month off! I soooo miss my sports - both the physical and mental benefits. The doc told me I may never play sports again and that instead I should take up yoga and stretching. I love yoga but refuse to believe I really will never get better enough to play sports. Also during my good stretches I try and do as much as I can, socialize, get a lot of work done, be active as its the only good part of life - my doc also told me to stop this and to do less during the good times so as not cause a flair up - but the bad times are so incredibly awful that I can't imagine giving up the good times. I'm not going to sit at home when I'm feeling good.

So I am interested in people who have CFS and what has worked for them or in nurses who work in a clinic / home health in the management of CFS - what has worked for you and your clients? I have a great doctor and we are trying lots of things but I am curious as to what else is out there that has worked for others that might be worth reading up on and bringing to my doc's attention. Anyone go into remission or recover fully from this? What do you do that optimizes your physical and mental health? How do you cope, especially work wise with the cycling and periods of total non functioning? Please make your suggestions about you so it isn't construed as giving me medical advice!

I know there are lots of alternative therapies and I'm a little leary of them but who knows that may change - pretty much I'll try anything once!

If you are a hater or a disbeliever you are entitled to your opinions - I get that - its kind of how I was until I got sick with CFS. I made the mistake of typing CFS into the search bar for other posts and came across a multipager of a nurse saying that as soon as someone walks in with CFS she does an eyeroll and thinks loser, followed by pages of people agreeing about all the losers with FM and CFS. Yikes! If that is you all you need to go is click the back button and move on - no need to come in to add your eyerolling.

[JoJo626]

I was diagnosed with CFS initially, but the CFS was brought on by having Lyme Disease. Most screening tests for Lyme miss many more positives than they catch. The Igg/Igm Western Blot done through Igenex labs in California are much more accurate (cost ~$190.00 prepay)

I would come home and crash, literally, on the couch and not move until I got into bed. With a few months of antibiotics, I was my old self again. In fact, I felt so good I decided to start nursing school. I still take Flexeril and Neurontin to get good sleep and to control pain, but the difference is amazing.

Unfortunately, I now have fibromyalgia (again triggered by the Lyme), but my doctor added Cymbalta to my other meds and have been doing good for the last year.

My doctor advises his CFS/fibro/Lyme patients to take LOTS of B12 and Vit C. Massage therapy helps. Deplin or Cerefolin NAC are Rxs he prescribes a lot in addition to flexeril, neurontin, cymbalta (or Savella), and sometime Xanaflex, Soma, or for people with really bad problems he'll give narcotics.

Stress will trigger relapses, so do whatever works for you to destress.

All the Best!

[7student7]

I've been through all sorts of health issues, thyroid, etc. Long story... Anyway, it ended up being a Vitamin D deficiency - it was so bad it damaged my bones even. It's worth checking out. I feel like 80% better with 50,000 units Vitamin D every week. Good luck! Don't let the doctors make you feel crazy - I know they tried with me.

[cheiserman]

I worked in home health care when I was dx with chronic fatigue syndrome and fibramylagia. Being independent with my work schedule helped me get through this disease. I saw an infection control physician since the dx started after a viral illness. All my labs including my WBC count were off for a while. It is a terrible dx and people do not understand. Fortunately, my symptoms went away after 2 years. I have other medical disease now that still affect my health, such as hypothyroidism, low Vit D and asthma. I get sick easily. I think this autoimmune disease is just a part of other health issues...My advice- sleep and relax as much as you can. My boss worked with me so that I didn't have 5 days in a row. Hope this helps.

[caliotter3]

I think this disease is out there and undiagnosed in a lot more cases than anyone can imagine. Many people never follow up with diagnosis and treatment because of the attitudes they encounter. Nobody wants to be likened to a hypochondriac or someone with psych issues when that is not the situation.

[Meraki]

Thanks jojo626, ramcda3, cheiserman and caliotter3 for sharing.

I've been in school so that has given me so much flexibility. I'm now done school however and am trying to figure out how to go back to work! Home health is a good idea, I was also thinking public health / school health as that is an area of interest for me and doesn't involve nights and might have a little more flexibility.

I do have both low Vit D and ferritin. I've been taking 3000IU of vit D as well as iron and after a year the vit D is up to 64 and the ferritin to 21. Still a ways to go but heading in the right direction. I might discuss increasing these doses.

Thankfully so far I do not have a lot of pain - other than some joint pain and a dull headache and both are relieved with ibuprofen.

I wasn't tested for Lyme - might be something to look into.

Cheiserman - am so glad to hear yours went away - there is hope!!

Caliotter - It does seem like somethign that would go undiagnosed and the stigma against it in the health profession is likely to keep it that way for awhile. So far, knock on wood, I don't have any depression/anxiety as I read that can also accompany it as well, although I see how having this could lead to depression out of the exasperation and frustration that comes from dealing with this debilitating illness.

The good news is - it looks like there is an increase in the research being done in the scientific community on CFS so hopefully with that comes a better understanding of the etiology and and recommendations for management and remission. So much reading to do!

[CFitzRN, ADN]

I have -zero- experience with this but wanted to say that I definitely believe you are suffering with a real, debilitating illness, and I very much hope and pray that you will recover fully.

[Meraki]

Thanks CFitz RN - I don`t know much about it either other than what it feels like to live with it! Thanks for your prayers - I also am hoping for recovery.

Hopefully someday the stigma against autoimmune illnesses and psych illnesses will be gone and that all illnesses will be seen as just that. It shouldn`t even matter even if this was a psych illness, or a physical illness - as they are all real, debilitating illnesses. That would help reduce the morbidity and improve the physical and mental health of many people if they could seek out help and support without a backlash from not only the public but also nurses, and doctors who believe unless it shows up in bloodwork, it isn`t a real illness. One can dream!

[Baloney Amputation, BSN, LPN, RN]

My husband doesn't have CFS, but he has fibromyalgia. The fibro pain permeated everything, including his moods, until he found a treatment (Savella) that really helped knock down his pain and consequently let his personality shine through all the pain that he had. He was working the floor as an RN at the time, and while he never called off of work because of his fibro pain, he said it was all he could do to make it through some shifts, with some days and weeks being much worse than others.

Fibro and CFS are real, real, real. To say they aren't real is like saying depression isn't real. Fortunately, attitudes have slowly changed about the diagnosis of depression, and we don't roll our eyes when someone claims the diagnosis of depression. Maybe with the same persistent education we've all received about depression, the same acceptance will happen for fibro and CFS.

I think if a fibro doubter saw my husband when he was having his worst days (which are more like a few weeks at a time), the doubter would have the doubt removed quite quickly. My husband has never been a complainer, is not overweight, quite healthy, and just happens to have fibromyalgia. I'm not saying being a complainer, overweight, and unhealthy compromises the picture of someone with CFS or fibro, but I believe it's what is *imagined* to be the picture of someone with CFS or fibro.

Fortunately, we found the treatment that works for him. The copay is $50 a month for Savella, but I'd pay $200 every month in a heartbeat for it. This treatment alone makes that much of a difference for my husband (and a difference for our entire family...when one person has chronic pain, the whole family suffers in some way or another). It's not like you can give a couple of Vicodin or something when the fibro pain comes on to take care of it lickety split, because the pain just doesn't work that way. The pain meds just don't help it much, if at all.

OP--you just find you a practitioner that will take your CFS seriously, and you will find some sort of help.

[Meraki]

Thanks applescrufette, I am glad that your husband has found a medication that works and that has gotten his pain under control. I have a friend who Fibro and I see the pain she has and the difficulty she has getting moving in the morning and I realize I could be much worse off.

As someone who was a doubter I would say that until you have had it or lived with someone who had it, it is not an easy illness to understand. I can seem so 'normal' and 'well' at times that I'm sure many people still think I'm faking when the next week I am home in bed sleeping or having difficulty joining in a discussion because I can't think fast enough. It is hard to explain and demonstrate this illness to others who are at a distance as it isn't easily visible.

[StephanieNicole]

I was diagnosed with CFS a couple years ago. I wasn't happy about it, considering there can't be a cure without a cause! I've always been convinced my symptoms are hormone related, but I had nowhere to turn, so I basically gave up hope.

But a few months ago, I saw an amazing endo! He put me on a low dose of Armour Thyroid (enough to bump me from the low-normal region to the higher end) and gave me a saliva test for cortisol and found out my levels are almost flat lined during the day and surge late at night. So I'm on a low dose of cortisol.

He also tested me for MTHFR mutations, and I'm homozygous for one that hinders my ability convert folate and folic acid into it's bio-usable form. Hello, Deplin!

On top of that, my progesterone levels are too low and testosterone is too high, so bring on the Metformin!

Lots of stuff going on, but my life has COMPLETELY turned around since my medications have taken effect! Having my hormones under control is phenomenal, and Deplin has me back to my happy self! I still have bad days, but they're nothing like they used to be and the good far outweighs them!

Just keep at it. Find your cause, be proactive, and don't take *there's nothing we can do* for an answer!

[morte, LPN, LVN]

Thanks jojo626, ramcda3, cheiserman and caliotter3 for sharing.

I've been in school so that has given me so much flexibility. I'm now done school however and am trying to figure out how to go back to work! Home health is a good idea, I was also thinking public health / school health as that is an area of interest for me and doesn't involve nights and might have a little more flexibility.

I do have both low Vit D and ferritin. I've been taking 3000IU of vit D as well as iron and after a year the vit D is up to 64 and the ferritin to 21. Still a ways to go but heading in the right direction. I might discuss increasing these doses.

Thankfully so far I do not have a lot of pain - other than some joint pain and a dull headache and both are relieved with ibuprofen.

I wasn't tested for Lyme - might be something to look into.

Cheiserman - am so glad to hear yours went away - there is hope!!

Caliotter - It does seem like somethign that would go undiagnosed and the stigma against it in the health profession is likely to keep it that way for awhile. So far, knock on wood, I don't have any depression/anxiety as I read that can also accompany it as well, although I see how having this could lead to depression out of the exasperation and frustration that comes from dealing with this debilitating illness.

The good news is - it looks like there is an increase in the research being done in the scientific community on CFS so hopefully with that comes a better understanding of the etiology and and recommendations for management and remission. So much reading to do!

i dont have a problem acknowledging that persons are ill, i just dont like seeing them blown off with a dx and little to no work up....you have a minimum of 2 nutritional def....and prob. many more. HELLO, the engine wont run without the proper fuel

http://www.bmj.com/cgi/eletters/334/7605/1221

please note there is some correlation celiac with hashis thyroiditis. Celiac, though genetic, seems to need an insulting event to be put into motion (perhaps depending on the genes). Lyme disease could have been that issue here....if you can find a DAN! doctor that will take adults it may be helpful...GOOD LUCK