Severe CFS- Stimulants no longer effective

I have been sick for the last eight years, with symptoms along the lines of fibromyalgia and chronic fatigue syndrome. I have been tested for everything under the sun, tried more medications and treatments than I can count, none of which have been very successful. I do have Hashimoto's Disease but it is under control and stabilizing my thyroid levels have not improved any of my symptoms. The fatigue is so severe that without adderall (adderrall) I am asleep 90% of the time (no exaggeration), however my body has developed a extremely high tolerance to stimulants, and I require a very high dosage of adderall (adderrall) to even get me out of bed and through the day, there have been days where I have taken 150-200mg of amphetamine salts and still was not able to get out of bed or stay awake. Typically I need between 60mg and 75mg just to start the day and have to take 30mg tablets repetitively through out the day. I am able to sleep at night and have no side effects to the adderall (adderrall). I am aware that my body will continue to increase my tolerance level, and I am extremely concerned about that. I am only 24. I am hoping someone will have some suggestions, or if anyone has gone or is going through this, just for the support. I am severely depressed, frustrated, and scared of the outlook on the rest of my life. And this is just one of my symptoms. I'd appreciate any response, and if you would like to privately send me a message please feel free. I am happy to answer any questions.

[em722]

Wow, girl. My heart goes out to you. I just now discovered this forum. I have CFS too, but not to the degree you have it! Mine started back in 92 after I had a surgery. I was bedfast then and slept most of the time, body pains, brain fog, etc. I was depressed too, because just prior to becoming ill, I ran at least a mile a day and had always been very athletic. It has been a major life adjustment, but over time my symptoms have improved.
I'm guessing there's little activity on this site just because of the nature of this illness. Plus, I didn't find CFS on the list of illnesses until I typed in the name at the top.
Just wanted to say a few words to you to start, but will try to stay in touch.
Take heart! We are out here and care about what you're going through.
Em

[Red_Star]

I have autoimmune juvenile pernicious anaemia and Hashimoto's thyroiditis. Fatigue from malabsorption of B12 was far worse than the fatigue of hypothyroidism. Besides autoimmune diseases, deficiency states most commonly mentioned with hypothyroidism are vitamin B12, iron and vitamin D. I would also recommend CoQ10 and magnesium as both play an essential part in the process that produces energy on a cellular level.

The following info is from the book "The Everything Guide To Thyroid Disease" by Theodore C. Friedman, MD, PhD and Winnie Yu Scherer:

"Although the majority of people with Hashimoto's will not develop any other disorders, it's important to know what some of these autoimmune conditions are in case you do start to experience symptoms. Keep in mind, too, that you may be more likely to develop Hashimoto's if you have one of these other conditions.

Type 1 diabetes
Pernicious Anaemia
Addison's Disease
Vitiligo
Celiac Disease
Alopecia Areta
Systematic Lupus Erthematosus (SLE)
Rheumatoid Arthritis
Sjogren's Syndrome
Inflammatory Bowel Disease
Multiple Sclerosis (MS)"

From John Dommisse MD's website on Vitamin B12 deficiency - symptoms, signs and optimal treatment:

"At least six neurological and psychiatric papers, in top medical journals, have shown that the normal range should be regarded as at least 500-1,300 pg/ml (rather than 200-1,100), since the cerebrospinal fluid level can be deficient when the serum level drops below 500, and neuropsychiatric symptoms often occur at serum levels between 200 and 500 pg/ml (VanTiggelen et al, Lindenbaum et al, Mitsuyama/Kogoh, Nijst et al, Ikeda et al, Regland)."

[VM78]

I have found that supplements and a low GI, mostly organic vege, fruit, higher amounts of lean protien diet worked a lot better than stimulant meds for me. At present i take a multi vitamin (Natures Own Balance+Lift, which has rhodiola + coQ10 +and extra Bs added on top of average multi mix ), an  CoQ10 combo (Micro genics CoQ10+B vitamins+ginkgo+vit E) in the morning and digestive enzyme capsules with meals.                      

[misha50199]

My heart goes out to you...my problems started in my late 20"s.  I had fibromyalgia for years.  22 to be exact and when I was 38 I got really sick for the fist time with EBV after a surgury.  I did take at that time Ritalin in the am and around noon which barely got me to 6 ocl Pm before I just feel over a crashed again.  I found out Ritalin has a short half life in your system which is why I crashed the minute it wore off.  after 9 mos I went off of it and began sleeping as much as possible and eventually fully recovered.  It really ***** because you are just barely existing to get through your daily life.  Lots of sleep and b12 shot helped me finally fully recover.  however I have had 3 relapses over a 12 year period and it is incredible frustrating each time.  Be kind to your body it needs it.  I have had it again since last year around July and I am really struggling to kick it but I have not had the luxury of cutting my work schedule which is definitely probably not helping matters.  I did quit taking the stimulant after about 9 months because I felt they were allowing me to force my body into the go mode when it really needed rest.  Best of Luck and God Bless

[em722]

Interesting. My CFS and Fibro started after surgery, too. I've never heard of Ritalin being used to treat this condition. Although my symptoms have lessened by about 20% over time, I still stuggle with it every day. Recently, I broke my foot and have had to use a wheelchair primarily, because using crutches causes me to get out of breath and lightheaded. The effort of moving and shifting in bed leaves me further exhausted. It is a tough one to deal with.

[misha50199]

Well the Ritalin wasn't really a treatment...just a solution for the fact that I couldn't stay awake for more than a few hours. I had 2 young children so at the time so it just made me functional.  My fibromyalgia started 22 years ago...in the medical community at the time it was unheard of.  So after multiple tests and multiple doctors, I generally got a pat on the back and they told me stress can do allot to us.  I didn't really get a diagnosis until about 10 years ago for the fibromyalgia.  I have only had 3 fully remissions...2 of them with my pregnancies and the other was when we built our house.  I didn't get the CFS until I was 38 after a  surgery.  The CFS is the worst because your so exhausted its hard to get to anything.  I have definitely found that the less active I am the Fibromyalgia get worse.  Interesting though I had shortness of breath the the EBV infection initially each time which did improve over time.  Honestly a round of steroids helped me to get over the initial hump.  I did take acyclovir at the end of last year which did bring my EBV numbers down.  I basically had to beg for these treatment options but they did help.  The fatigue for me is more disabling than the pain to me.  I hope your foot heals quickly!!  Wow 20% improvement is not much...how long have you been sick for.  I take allot of vitamin/supplements...Vitamin World and I are best friends.  I am going back to the South Beach type of diet because I felt better on this regiment and had far less gut symptoms... in fact no gut symptom.  I wished I would have not changed this.  I also need to get off the 12 hour work shifts...which means I basically have to get a new job.  I do not want to do this until I am feeling better.  It is expensive to feel really crappy because your always buying a book or trying a supplement out of desperation in an effort to try to feel better.  Getting really random here!!! lol  I do wish you all the best.  It is sometime lonely in this world because Fibro.CFS don't come with giant bruises or bandages and people go wow you are in bad shape.  You get to the point where you hate to complain to much because people just think...what is she complaining about now.  

[misha50199]

Agreed...little activity because of the fatigue and brain fog.  your either to tired or you forget.  It is not fun being us!!!  If you have tried any supplement that have helped you out please let me know.  always looking for new idea's or any input.  Best of Luck and God Bless

[misha50199]

I just recently got a diagnosis of Hoshimoto's as well. I have been put on 75 mcg of Synthroid but its only been a week.  Everything I have read is that it take about a month to 6 weeks to build these levels up in your body.  Add this to the growing lists of CFS/ Fibromyalgia/ IBS.  I used to be able to just go and go.  Now I have to pace my self and have really had to change everything about my life which I hate more than anything.  Feel cheated!!!  I am trying to think more positive.  I to was anemic on my labs but only slightly.  Exhausted is my middle name.  God Bless

[em722]

Thanks for posting. You're right, there is lonliness with this illness. On the outside I look healthy, except for the fatigue in my eyes when the "curtain comes down" as my husband says.CFS has changed my whole life. Like you, previously I was very active and very fit, never finished a 'to do' list because always kept adding to it. I have had this for 20 years now! I have tried many, many treatments, both western and eastern medicine, many vitiamins and mineral supplements, acupuncture, (which helped my digestion), B12 shots, heparin shots, extreme no sugar, no gluten, hardly anything diet, (lost weight and seemed to help my Fibromyalgia).

Have had many, many tests of saliva, blood, urine, muscle,heart etc. Have consulted internists, (one gave me the CFS diagnosis, another told me CFS was a "waste basket" conclusion. I was told it was allergies, depression (yeah, I got depressed after awhile), stress, burnout, micro-organisms. The surgery that launched this whole thing was a hysterectomy and one doctor suggested I was "grieving the loss of my uterus!
I think each treatment helped a bit, but pacing,(not immediately burning every bit of energy I get) has worked the best.
It is so good to talk with others who have this! Keep posting, please.
Em

[DDKing10]

Following seems to work:

Nuvigil 250 mg.
CQ 10 + Acetyle L Carnitine.
Monoluric Acid ( kills EBV)
and from fatigue to fantsatic daily powder.

Your goal is to keep EBV at bay. This virus is so clavier that your NK cells are completely infected which is causing you to have chronic fatigue.

Consider asking your physician to run following test will give them a comprehensive look at whats going on.

CD 4 / CD 8 = ratio
NK Cell ( B Test )
Full Immunological test.

These test are expensive and typically run for patient with AIDS. I believe CFS is cause by EBV and CMV as they infected our NK cell thus causing T4 and T3 transcription.

Good luck.

[Chronicjen]

Hi guys, sorry if this sounds wrong, but it's nice to know I'm not alone. I'm fed up. Here's my stupid list: lifelong anxiety, PTSD, fibromyalgia, Sjögren's syndrome, restless legs and anaemia and all these other things that don't count as they are now managed by medication. The thought of being I'm meds for the rest of my life gets me down. And finding drs with empathy AND intelligence is also tricky here in Australia. Anyway, just wanted to say hi, I've runout of energy :)

[Tohellandback]

You noted in your comments your symptoms started after your hysterectomy.. Hormones are very potent & affect our bodies in so many ways & often low hormones will cause many of the symptoms you described

[Lebensrose]

Hi girl,
First of I wish you best of luck
Cfs is a major nightmare.
it helps when you take the following supplements:
All one once a day unless listed otherwise
Methylcobalamin 5mg
Vit. B complex
Alpha-lipo-gamma 600
Vit. A 25.000 units (after 4 weeks, stop taking for 2 weeks, then start again and slowly build until you take 100.000 units)
Vit. D 20.000 units (daily for 2 weeks, then afterwards 1 every second day)
Vit. B2 100mg (3, 2 tims a day)
Q10 (make sure its the one which is already made so your body can absorb it without havng to modify, take loads)
Selenium 200 units
Zink 50mg
Magnesium (preverable as an granulets, or whatever you call it when it's not powder, take enough so that you ehm.. relief yourself aprox. 2 tins a day)
Quercetin plus Vit. C. 500mg (First take once daily,  slowly take more, if your getting a haedache, youve taken to much. In that case dont take it until its all gone, then start again but with no so high a dose)
Adenosylcobalamin 5mg (needed so your body can absob the b12 = methylcobalamin)
No flush niacin 500mg (trice a day)
Dhea 25mg
D-ribose 3gramm (trice a day)
Mvm-a (2 trice a day. high dosis vit and min combination)
NAC (trice. A day)
Super EPA 600mg (trice a day)
Nadh 20mg
7-keto 100mg

Dont bother taking any chemical substances, that'll only destroy your body further. (As its already under heavy oxidative and nitrosative stress, which in turn kills mitochondrian, ruins your thyriod and kidneys)
For literature see Martin p Pall in the usa or W Kersten in Europe. (Sorry, don have a clue how things are in Australia).

It'll cost a fortune and takes time but using all this i've gotten from bedridden to studying at an University. (Contracted it at age 14, now im 24)

Take care!

Ps detoxing, to get the chemicals out of your body helps. Try first cleanse from renew life. And please also take their probiotica (50billion) because its highly likely that whatever is left in your body aint that much nor that helpfull