Advice for CFS

[Michael0202]

Hi,

Im writing on this board as I am desperately looking for help or advice on how to deal with my current illness. I have been dealing with tiredness for as long as I can remember. My memory is awful short and long term so I have told my GP it has been about 3-4 years that I have noticed this exhaustion but it has been going on for a decade.

Every day I have to force myself out of bed after wresting with the idea for hours. My body hurts and my mind is always so cloudy - my mood in morning is always a grump one. some days im so tired Ill sleep through my alarms. I never wake up rested abd it always feels like I have had about 1 hour of sleep each night. It is important to note that my sleep is not disturbed and ill sleep constantly till my alarm goes off. if i have no alarm i wont take for well over 12 hours.

For the rest of the day my brain is usually cloudy and fighting to stay focused. I struggle to read or concentrate on what people are saying and I always forget things. around 1-2 oclock ill begin to get uncontrollably tired, eyes are extremely heavy and my chest / breathing becomes very notcible and heavy. This is after going to bed at 9-10pm the night before and getting a good rest. This always happens.

when I get home from work ill crash and sleep or sometimes fight the unrelenting fatigue till around 8 or 9 then go to bed. When i go out to socialise with family or even just go out for dinner i am always in battle with the tiredness. I can barely live and im only 26 years old. it feels like im trapped in the body of a 80 year old.

Ive been seeing my GP for many years about this, we have trated my depression I had a few years ago and am now definitely not depressed. the tiredness continues. They checked my thairoid and treated me for an underactive one, with my current medication my levels are now normal but my tiredness continues. They have checked my heart with xray and my bloods for mutiple problems abd they say I should be really healthy. I was told to exersise more and eat more healthy meals. I have been doing these things for 3 years now and nothing has changed.

My GP told.me to seek help online answers / possible medicatons or find a doctor who may have answers. Im at a complete loss and need help.

Any advice would be appreciated.

Michael

[Nazareth434]

check also for sleep apnea=- waking up exhausted is one sign that it could be it- brain fog is another sign- many people have it and don't even realize it- you would think that waking up from not breathing many times a night, one would know it is happening, but you don't fully wake up- and folks will have it for many years and not even know it-

[Catusmc]

I bet you have an allergy. I have met dozens of people in the last year who turned around all of their “undiagnosable” symptoms CFS, IBS, fibromyalgia, anxiety, etc but only changing their diet.

I have a severe soy and milk allergy that affects my brain (dizziness, panic attacks, cloudy thinking), causes muscular pain and IBS. Found out after being hospitalized last year. Before any tests my gastro doc said stop eating dairy immediately, get skin prick allergy testing and look into an elimination diet challenge of the top 6 food allergens. Of course all of my many many blood tests, MRIs, esophagram and endoscopy came back 100% normal. However there is a “non-ige” type of allergy that there is NO test for. The only way you find out is elimination diet for 3 weeks, then slowly add back in each of the 6 until you find what affects you.

After 3 weeks I felt better than I have in 10 years. My anxiety vanished along with my other symptoms. As I added back each milk and soy and all of the symptoms returned.

Here is how it works for me. If I accidentally have a trace amount of soy for example, I will get immediate stomach discomfort, but then 2 DAYS later I get all of the mental disorder symptoms back and it lasts for 2 WEEKS. This is why it is so hard to nail down what food you are allergic to.

Make a food log and if you feel worsening symptoms, consider what you ate up to 2 days ago. There is no cheating on this kind of diet. Trace amounts make me feel like I’m dying for 2 weeks. No ice cream is worth that hell. Make a commitment and eliminate dairy, soy, eggs, wheat, nuts, seafood for 3 weeks and see how you feel. If your symptoms are better, add one food type back in one week at a time. 80% of people with a food allergy are affected by more than one allergen so don’t stop when you find one culprit.

Hope this helps, good luck!

[D11042005]

You may have fibromyalgia. Your symptoms are almost like me. My condition is almost same like you. Only I and my doctor knew about my health status. I always try to stay happy happy and active but tiredness always remain with me. I am always scolded at home for being lazy but I can't help it. At college, teachers wonder that why I don't participate in any physical activities such as dancing or any sports. But I can't.

[specialmom]

wow, thanks for the post.  Have you had any luck being treated for fibro with regards to your energy?  

[Sara_MHModerator]

Hello Michael, welcome to MedHelp's forums.  Thank you for your question.  Working with your doctor is important and are glad you have been followed.  Remember, you can always get second opinions from another doctor. Some give up and some continue to search for answers for their patients as they solve a medical mystery. Have you ever considered visiting a nutritionist?  They may help with a diet plan to correct any deficiencies.  Vitamin deficiencies are also associated with fatigue.  

Chronic fatigue syndrome is a true disorder but often doesn't get the attention from health care providers which is unfortunate. It's complex though and hard to narrow down to this diagnosis. https://www.mayoclinic.org/diseases-conditions/chronic-fatigue-syndrome/symptoms-causes/syc-20360490.  One thing that literature shows is those diagnosed with chronic fatigue syndrome often do better when they stay on depression medication rather than taking for a while and discontinuing it.  Food for thought. Exercise is great but for CFS, it's graded exercise that matters. Online support is important too and we are glad you found us.  We'll reach out to members and hope that you connect with others here also coping as best they can.  

Please know that there is always research and studies going on to improve things for those diagnosed with CFS. Here's something that just came out https://www.deccanchronicle.com/lifestyle/health-and-wellbeing/060319/chronic-fatigue-syndrome-can-be-improved-with-cocoa.html

So, please stay in touch.

[jockojohnson]

you need to see an integrative dr someone  who specializes in immunology a naturopath would be helpful also.you have vitamin deficiencies .low zinc causes low testosterone levels.take a good multi vitamin something with high levels of d3 over 50 vitamins have higher levels of everything but you could easily do 5000 iu d3 you cant overload on this but a multi with 1000 or better would be good zinc in a multi is around 11 to 16 mcgso you will also need a zinc supplement to go with another 25 mcg you dont want to exceed more than 40 mcg a day more than this will overload you and can be detrimental.40 is safe .restoring proper zinc levels will help your testosterone levels .but a naturopath or an integrative doc will test you and show you what im saying is true.depending on how low your t is you may need a testosterone cream.that is why it would be best to get an integrative doc.a general practitioner isnt going to help you .other things you can do are eliminate all sugar from your diet .eat green vegetables several times a day.this fuels your probiotics.take a good probiotic.cacao instead of cocoa,stevia as a sweetner both have a calming effect on the body due to thier antibacterial,and antifungal properties.they are foods that double as medicine just like turmeric for inflammation omega 3s.herbs and spices are antibacterial and antifungal use them in everything you eat you will notice the benefits over time .