Newbie looking for advise

[JoelB]

Hi,

I am new here. I am 65 years old male and have been athletic my entire life.
Starting in high school I was on the cross country and track teams, in my 20's I got into bike racing.
I have done marathons, century bike rides and triathlons.
In my mid 40's one day I started to feel fatigued. I was training for a 10 mile running race.
The fatigue gradually got worse and I also had insomnia. I saw a doctor that I had seen in the past and he ran some tests.
Some of them were not normal but he did not seem concerned. Eventually I ended up in the hospital after collapsing one day. I was diagnosed there with Addison's Disease (adrenal insufficiency). I was given a prescription for hydro cortisone and florinef and was told that my life would return to normal. Well it didn't, I continued to have fatigue and could not work or function.

About a year later the endocrinologist I was seeing diagnosed me with hypothyroidism and I started taking Levothyroxine. The difference was remarkable, after a few months I was feeling much better and all my symptoms improved and I started riding my bike again after 2 years of inactivity. I continued to improve and increased my cycling until I was doing rides up to 100 miles with lots of hills. I was feeling great, then after a few years without much warning over a period of a few weeks I started to have fatigue and sore muscles. Then my body crashed and I was unable to continue exercising. It took me about 6 months to recover and I had to slowly build up my strength again. I would feel good again but then after maybe a year it would happen again. This cycle would keep repeating over and over again. At some point I realized I could not and did not want to continue on that path. So I decided I needed to moderate my exercise and listen to my body. That is not easy to do given my competitive past. It helped but I still had crashes and it seemed that as time went on the threshold of exercise load that would trigger a crash kept getting lower. One occurred last August after a really hard ride that I clearly should not have gone on.

But I was able to reduce my riding and slowly recover until Last month when it happened again but I was cycling much less than previously. I am an engineer and have been under a lot of stress at work and I think this may also be a factor.

I have seen numerous doctors in the past to try to figure out what is causing this, but all my tests came back normal and their response was I don't know what is causing it. I thought for some time it could be related to my Addison's Disease and that I needed to take higher doses of hydrocortisone during times of higher physical and psychological stress. But after doing this for 20 years I am somewhat convinced that is not the problem. I have many of the symptoms of ME/CFS. Here is a list:

• Insomia
• Feeling awake when I go to bed at 10pm
• Feeling restless
• Adrenaline feeling
• Symptoms get worse as the night goes on
• Trazodone helpful but not always effective
• Waking up fatigued even after sleeping well
  
  
• Exercise Intolerance
• Exercise beyond a certain threshold during the day increases insomnia
• Significant reduction in exercise duration and intensity still causes symptoms
• Chronic sore and fatigued muscles, most noticeable in quadriceps
  
  
• Other symptoms
• Numbness and tingling in some areas including feet
• Increased perception of pain
• Flu like weakness
• Daytime drowsiness
• Sensitivity to sounds

It seems that this time my symptoms are worse relative to the amount of exercise that I was doing. This year we have had a lot of rain so I have been riding my bike less. Right now I am not able to ride my bike even at a very low level without making my symptoms worse. The insomnia that I have seems particularly sensitive to it. The past few days I went for a slow walk about 2 miles. Yesterday my legs were feeling sore and I felt exhausted afterwards. Last night I had trouble sleeping again. Based on my past experience its going to be many months before I can do any exercise again. I am going to see my GP on Monday to discuss this but I am not expecting her to give me any diagnosis or concrete answers. I feel that ME/CFS best describes my situation and I know there is not any test or cure for it. I just want to know if that is the case or if it could be something else. Thanks for any advise.

 

[linusbert]

are you taking statins?
have you ever taken Q10?

have you taken NSAID? ibuprufen?

antibiotics?

do you take any medication?

have you had b12 tests?
any nutritional tests?
thiamine?

have you taken any supplements? vitamins?

have you ever taken vitamin D?

have you ever taken l-carnitine? creatine? d-ribose?

what about your tyroids? taken any iodine?

have you taken adrenal support? vitamin C? pantethine? sodium?

did you try any cortisol to check if this increases your tolerances before exercising?


what kind of diet did you have the last years? vegan? vegetarian? whole foods? meat?
last time you ate liver? organs? eggyolks.. how many?

do you eat regularly? which intervals? fasten times?

have you measured your A1C or morning glucose?

do you have a ECG? what is your last QTc (note the C) value?
if you dont have one, let her do one and check for QTC (not QT, the QTC).
if its above 400 or even 450 this suggests electrolyte imbalance. a deficiency in any of those or imbalance.


your doctor should , if he didnt already, do a FULL nutritonal panel. ALL VITAMINS, all minerals and traceminerals. doctor will say thats not necessary - despite not knowing whats going on.. tell her you insist!
vitamins b1 b2 b3 b5 b6 folat biotin b12
iodine selenium zink copper iron magnesium potassium natrium chloride phosphorus
vitamin D
vitamin E and K and A
carnitine
methylmaloronic acid (b12 status)
transketolase in RBC (thiamine status)
- above is the minimum, if she cooperates also go for:
GSH, GSG (oxidized / non oxidized glutathione)
SAMe (s-adenosyl-methione)
homocysteine

 

[JoelB]

Thanks for your response. See my answers below.

are you taking statins?
Yes I had a heart attack in 2020 and I have 4 stents in my coronary arteries.
I have to take statins to lower my LDL it is not a choice.
I have had these same symptoms numerous times before I started statins so i don't think that is the problem.
I did not have any side effects from taking statins

have you ever taken Q10?
I did take Q10 for a few years. It is expensive and I did not notice that it helped.

do you take any medication?
Hydrocortisone, Florinef, Levothyroxine, Rosuvastatin, Zetia, Trazodone

have you had b12 tests?
Not sure
any nutritional tests?
No
thiamine?
No

have you taken any supplements? vitamins?
Fish Oil, Vitamin D, Calcium / Magnesium

have you ever taken vitamin D?
I take Vitamin D twice a day, my levels are normal.

have you ever taken l-carnitine? creatine?
No

what about your tyroids? taken any iodine?
I take Levothyroxine

have you taken adrenal support? vitamin C? pantethine? sodium?
No, my adrenal glands do not function

did you try any cortisol to check if this increases your tolerances before exercising?
I take 20mg Hydrocortisone daily, I have tried taking extra during days that I ride my bike but it did not make any difference.


what kind of diet did you have the last years? vegan? vegetarian? whole foods? meat?
last time you eat liver? organs? eggyolks.. how many?
My diet is mostly fruits, vegetables, whole grains and legumes.
I eat meat usually chicken or fish about 3 times a week.
I do not eat liver, organs or egg yolks

do you eat regularly? which intervals? fasten times?
Yes, breakfast, lunch and dinner

have you measured your A1C or morning glucose?
Glucose measured during routine lab tests

do you have a ECG? what is your last QTc (note the C) value?
if you dont have one, let her do one and check for QTC (not QT, the QTC).
if its above 400 or even 450 this suggests electrolyte imbalance. a deficiency in any of those or imbalance.
No


your doctor should , if he didnt already, do a FULL nutritonal panel. ALL VITAMINS, all minerals and traceminerals. doctor will say thats not necessary - despite not knowing whats going on.. tell her you insist!
vitamins b1 b2 b3 b5 b6 folat biotin b12
iodine selenium zink copper iron magnesium potassium natrium chloride phosphorus
vitamin D
vitamin E and K and A
carnitine
methylmaloronic acid (b12 status)
transketolase in RBC (thiamine status)
- above is the minimum, if she cooperates also go for:
GSH, GSG (oxidized / non oxidized glutathione)
SAMe (s-adenosyl-methione)
homocysteine

I will ask my GP about this when I see her Monday.

 

[linusbert]

are you taking statins?
Yes I had a heart attack in 2020 and I have 4 stents in my coronary arteries.
I have to take statins to lower my LDL it is not a choice.
I have had these same symptoms numerous times before I started statins so i don't think that is the problem.
I did not have any side effects from taking statins

have you ever taken Q10?
I did take Q10 for a few years. It is expensive and I did not notice that it helped.

(no medical advice, no doctor, always do your own research)

1.)
statins can cause myopathy (and i suspect also mitochondrial dysfunction in the long run), its actually not even rare. the reasons is statins block not only cholesterine but also production of Q10 and others.
statins should always be accompanied with Q10. this is very important.
also to prevent things like mitochondrial dysfunction. which occurs with q10 deficiency. if you take Q10 or ubiquinol it mught be in rather higher dosage of like 100mg to 1000mg.
tell your doctor to measure

2a.)
one reason for bad arteries can also be elevated homocysteine. its important to measure this.
this would be treated with Folat+b12+b6

2b.)
another reason for that can be too much calcium. also important to check this. also a lack of vitamin C (which ionizes calcium in blood and therefore it does not stick to places it shouldnt) and vitamin K2mk4/7 is important to put calcium away from soft tissues and arteries and move it into bones. usually it helps with artery health a lot.
maybe talk to your doctor if you can take vitamin K2mk4. (also please read about vitamin K2mk4 - its also in eggs and butter and cheese). viatmin K2mk7 is also in natto if you can eat that. its not as good as k2mk4 but it might work.

2c.)
another reason can be too much oxidation, fish oil could not be beneficial if it is oxidized or taken too much.
- as can be PUFA rich plant oils.

3.) vitamin D
thats good,
how are your blood levels? (should be in 40-60ng/ml range)

4.) "what about your tyroids? taken any iodine? I take Levothyroxine"
weird. usually doctors start with iodine first. usually this improves tyroids a lot. if that doesnt work. then l-tyroxine comes into play. also selenium is required to keep balance with iodine.
talk with your doctor about iodine.

5.) "have you taken adrenal support? vitamin C? pantethine? sodium? No, my adrenal glands do not function"
i suppose you have some remaining adrenal function, otherwise i see not how you could survive with just 20mg.
do you have a distributed scheme over the day or take it just once a day?
vitamin c + b5 + salt are very important to strengthen the adrenals. this can help.

6.) "I do not eat liver, organs or egg yolks"
as you already have cholestrol problems and stents, i do not dare to recommend anything here.
if you hadn't i'd recommend eating at least 3 egg(yolks) a day and 50-100g liver per week.
cholin is SO! important to keep cholesterol in check and also to transport fats into places where it should be.

6b) you eat a lot of plant bases fats? those are dangerous due to oxidation and bad omega6:3 ratios. one must be careful to not get out of balance. PUFA should be limited to the minimal amount required to help function. mono unsaturated fats are much better, high EVOO (olive oil) is a good plant based fat. but butter from grassfed cows is another good source

7) "I will ask my GP about this when I see her Monday."
and because you take statins, she really should also measure Q10.

8) carnitine + q10 + ribose + B2 + Adenosylcobalamin + others boost mitochondria and energy production. this is one angle CFS folks might try.
also this needs always to be accompanied with a low dose multi mineral and vitamin to get everything in, otherwise there is risk to cause imbalances in the long run and make things worse.

 

[Zebra]

Welcome! And, I'm sorry you are experiencing these symptoms.

In regards to the exercise issues/muscle issues, you may wish to look into two possibilities:

1. Statin-induced myopathy (as mentioned in an earlier post)

2. Statin-induced autoimmune myopathy. This one has an very specific antibody that can be tested for: anti-HMGCR

Best of luck!

 

[hapl808]

It seems that this time my symptoms are worse relative to the amount of exercise that I was doing. This year we have had a lot of rain so I have been riding my bike less. Right now I am not able to ride my bike even at a very low level without making my symptoms worse. The insomnia that I have seems particularly sensitive to it. The past few days I went for a slow walk about 2 miles. Yesterday my legs were feeling sore and I felt exhausted afterwards. Last night I had trouble sleeping again. Based on my past experience its going to be many months before I can do any exercise again. I am going to see my GP on Monday to discuss this but I am not expecting her to give me any diagnosis or concrete answers. I feel that ME/CFS best describes my situation and I know there is not any test or cure for it. I just want to know if that is the case or if it could be something else. Thanks for any advise.

I experience and experienced a lot of these things, just started in my 20's after a viral illness and got back enough in my 40's to mostly lose the ability to walk. A lot of what you describe sounds like when I was in my 30's. I would push myself, then crash for days or weeks or months. My ability to exercise (something I loved before) diminished until I couldn't work out at all. My experience might be a bit more extreme, but the heavy and sore legs, flu like weakness, unrefreshing sleep, and all that.

I've never gotten what I consider a definitive diagnosis, but in addition to ME/CFS you might want to consider looking at MS. A lot of the symptoms overlap, and MS is much less clear cut than many people think.

 

[Wishful]

My insomnia is triggered by physical or cognitive exertion past 2 PM. Exertion before 2 doesn't trigger my insomnia. You may want to experiment to see if your triggering is time-dependent, and whether cognitive activities trigger it too.

My ME-caused muscle aches are focused on my front thing muscles too. LDN was very effective (for me) at blocking that pain. Acupuncture seemed to work just as well the first time I tried it, but not the second, and I didn't try it again (LDN was cheaper and more convenient).

As for the "waking up feeling fatigued", I think it's a dysfunction that feels like lack of sleep, but isn't mechanically or biochemically the same problem. Last morning, after two nights of insomnia, I felt the true 'lack of sleep' symptom, and that felt different from the usual ME 'unrestful sleep' symptom. There's no clear definition of 'fatigue', and no clear way to measure lack of sleep, so the issue is confusing. Certain foods (dietary fibre now) make me feel more sleepy/groggy than missing a few hours of sleep.

You said 'exercise intolerance', but do you fit the description of PEM? Is there a reliable delay between exertion and symptoms?


Welcome to PR.

 

[Garz]

outdoor lifestyle prior to onset

fatiguing illness - with flares after exercise - including sleep disturbance - and PEM like issues

flu like symptoms with ongoing insomnia

tingling / burning / numbness sensations - esp in feet

wired but tired feelings /offset day / circadian rhythm

are all typical of tick born infections as is a relapsing remitting or worsening then improving somewhat - type of pattern - stress often worsens symptoms- good lifestyle choices often help somewhat

most people presenting to GP's with these infections are "diagnosed" with CFS

testing is poor and doctors are uneducated about the prevalence and manifestations of these emerging infections.
diagnoses are also contentious due to the existence of a schism in the mainstream medical community at present - so GP's often wish to avoid contentious diagnosis and opt for a safe option of CFS which has no tests to confirm of deny it.

the following symptoms from your list are common in tick born illness ( but almost any symptom is possible)

• Insomia
• Feeling awake when I go to bed at 10pm
• Feeling restless
• Adrenaline feeling
• Waking up fatigued even after sleeping well
• Exercise Intolerance
• Exercise beyond a certain threshold during the day increases insomnia
• Chronic sore and fatigued muscles, most noticeable in quadriceps
• Numbness and tingling in some areas including feet
• Increased perception of pain
• Flu like weakness
• Daytime drowsiness
• Sensitivity to sounds

auto-immune disease - like Addisons, Hashimotos, Sjogren's etc is also a common side effect of tick born infections - as they dysregulate the immune system and cause chronic inflammation which drives auto-immunity

as a case in point - i became ill with a fatiguing illness with many of the same symptoms as yours - in 2015 and was diagnosed with CFS by my GP - and after years of missed treatment opportunities eventually through my own investigations found conclusive proof that i in fact have Bartonellosis.

i have been improving steadily for 18 months now with treatment focussed on that

if it were me i would try to find a reputable Lyme literate doctor.
they are trained in how to diagnose these infections properly ( conventional infectious disease doctors have been miseducated and are in denial - i have seen 4 now and they were all of little or no help).

this group is good for support and answers to questions
https://www.healingwell.com/community/default.aspx?f=30

 

[Garz]

as a brief follow up - you are also in the age group that has the highest incidence of lyme disease ( it increases with age once past our 50's ) eg - many studies show this type of pattern

 

[GreenEdge]

Are you taking statins?
Yes I had a heart attack in 2020 and I have 4 stents in my coronary arteries.
I have to take statins to lower my LDL it is not a choice.

No, you are the in charge of your own body... Your doctor is only trying to do their best (whether right or wrong).

Please watch the next 2 minutes of this video:

 

[cheeseater]

They used to treat Addisons with steroids and amphetamines. Steroids can have all sorts of side effects, with insomnia being one of the more troubling. Insomnia from steroids not at all unsusual, especially as people age. Your Dr treating Addisons should be all over it. Try 25mg benedryl pill before bed.

 

[gbells]

@JoelB

Can you go more into your history? How did the fatigue develop? Did you have an infection/infections that preceded it? Any chronic sore lymph nodes? Positive laboratory tests?

It must be really hard for you to go from a pro cyclist that could do 100 mile rides to zero. Are you still functional with daily activities?

The only saving grace I can see is that this hit you late in life after you had time to accumulate resources so hopefully minimal financial stress.

 

[Arius]

Dr. Myhill developed a test for mitochondrial dysfunction, which effectively doubles as a test for CFS/ME. You have to pay out of pocket for it though. Never seemed worth it to me; I can tell my mitochondria don't work based on my symptoms alone. Plus I did another test that also confirmed my Kreb's cycle is messed up and my cells are dysfunctional at producing energy in various ways. Great at churning out inflammation though.

Anyway, her website is here: https://www.drmyhill.co.uk/

Her dietary advice literally saved my life, although she's changed it and is now pushing a keto diet which I haven't tried. I was on a severe downward spiral before I did an elimination diet and figured out some of my food triggers. (Casein and gluten give me extra brain fog, headaches, and joint pain, I'm intolerant to nightshades, and for a while I couldn't eat high-FODMAP foods because they were feeding super bad neurotoxic gut bacteria.) I quit sugar and grains and processed food and started feeling substantially better. Nowhere near cured, but definitely not rapidly fading away to nothing. I got some of my brain function back and stopped crashing so hard multiple times a day.

Stress is a big factor in CFS/ME and I would do whatever you can to reduce or eliminate that. Meditation really helped me.

Best of luck.