Chronic Fatigue vs Fibro

General
1

Hi everyone -

I’m new to this forum and site, and quite frankly, the world of Fibro in general. As an intro, I am 32, male and undiagnosed.

I will start by saying I’M TIRED OF BEING TIRED I’ll delve into my details and story, but want to say thanks in advance for any help or recommendations.

About 7 years ago, I had a root canal. I had no pain, my tooth simply fell apart into a piece of bread one night at dinner. About 2 weeks later, I had what I thought was strep throat. Or at least, that’s what I was treated for. The doctor at the clinic said it might be mono, but a test would take much longer to come back so he could treat me for Strep. Shortly after that, I moved to Italy to go back to school for a year. My first week and a half, I lost my voice unexpectedly. No other major illness. Fast forward one year and I moved back to the states and to New York. I was still only 25 years old, but started to feel at least twice my age. I was tired all the time and mentally drained. I saw a GP and he suggested exercise. I’ve never been sporty, and asking me to move when I felt like a corpse didn’t help. I then saw a therapist after doing some research and thought it may be depression. I was put on Zoloft, which didn’t really help and made me gain about 10 pounds. I switched to Wellbutrin which is supposed to have a stimulating affect, but instead sent my muscles into spasm. I couldn’t turn my head at one point my shoulders were so stiff. I have stopped that medication and have not tried anything else since.

I don’t sleep well, despite trying to get to bed early. I toss and turn to try and get comfortable. I have a fantastic mattress, pillows and very comfortable bed linens and it still takes me at least 30 minutes to find a comfortable position. Often my arm will go numb or my hip will hurt, or my knee. None of this coming from doing anything strenuous I might remind you… I would say I’m not refreshed from sleep but peak at around 10:00-11:00 in the morning with the most energy. Besides that I’m a zombie. I have acupuncture sessions approx every 2 weeks to deal with muscle tension which seems to be ever present. It’s a temporary fix.

My diet is both good and bad. If I focus I can be good. When I’m in a particular slump, carbs and sugar are my best friends. I’ve tried drinking caffeinated coffee but it’s lost on me for energy. I used to like to drink alcohol and now any amount will make me have hot flashes at night and leave me burnt out the next day.

I have seen now 3 doctors plus a therapist, all who cannot put a true diagnosis on why I am always SO exhausted. I’ve explained that even simple things like taking out the trash or washing my hair in the shower can seem daunting. This didn’t seem to concern them…

I’d love to hear what other people have found to be successful ways of dealing with this extreme fatigue. I feel like I’m about 75 years old at 32. I can’t imagine what old age would be like.

Thanks for reading my story and for your responses.

2 Likes
2

I had an infectious disease specialist tell me that Chronic Fatigue was the disease, or assault, and that Fibromyalgia was the body’s way of dealing with the assault. This made sense to me since everyone I know with Fibromyalgia has a different causation.

The diagnosis seems to be the golden ticket - still, after all these years… Treatments that work are designed for the rich, but the rest of us poor slobs can muddle through nicely with essential oils and a very clean diet. Sugar is our worst enemy. Sorry. But, really, once you kick the sugar addiction, life is really much nicer. When I kicked the habit, I felt fully alive for the first time in decades. I don’t miss it either. I really thought I would, because I really loved dessert and I can bake.

3

Jason I hope you find relief. I’m guessing you are a male. I’m also another male (mid 40s) with this condition. I look very healthy and fit and used to exercise a lot but now I can only do light exercises in my good days only (walking, light running, yoga) or I will have a bad flare up. I also find that my doctor does not take me seriously if I talk about chronic pain and something like fibro/CFS. I think it’s because I am a man. I have done every kind of blood test to check all my ‘levels’ and everything seems fine. She just thinks it’s depression. She put me on Zoloft but that made me feel a lot worse so I stopped after about two weeks. I’m now just trying to control them chronic pain and manage my flare ups by carefully watching my eating habits ( reduce sugars, wheat, dairy and meats as much as possible) and also doing yoga and meditation when I can. I feel like there is a lot of stigma attached to a man having this condition so I rarely talk about it to anyone, just deal with it the best I can. My mom has also had nerve pain and neuropathy(?) for many years so I think it may be genetic. It’s very hard to deal with especially when I feel so useless and debilitated during a flare up and I even try to convince myself that is all in my mind and I’m making it up. I’m really trying to explore the emotional aspects of this condition as well to see if I can help myself by not ‘locking in’ any negative emotions . ( The meditation is also supposed to help with this). I’m also taking turmeric pills, multivitamins and some other supplements daily but not on any serious pain meds. I’m planning on getting some Magnesium too to see if it helps during flareups. Good luck to you!

4

HI there, Im new to this site and I was just diagnosed earlier in the week with Fibro… Can you tell how you went about cutting out all sugar.?. and does that mean you didnt use a sweetner either, light sweet and low or splenda?

5

Thanks so much for the responses! I have a meeting with my doctor this week and am going to see if she can give me a more specific diet to follow and guide me to what supplements I should be taking. It’s also getting to be that time of year when the sun goes down earlier and earlier. My blood tests did reveal a slight vitamin D deficiency, which I do take a supplement for daily. But this does not seem to be enough to shake the fatigue. I will also try and track my sugar intake and see where I can cut back. How crazy did you get with sugar? I don’t have sugar in my coffee or tea and try (!) to limit sweets. I know some people who went so far as to cut out even balsamic vinegar from salad dressing because it can form into sugar and gave us certain fruits entirely. Has anyone tried the fodmap diet or an anti candida diet with success? Will keep checking back and post more as I continue to talk to my doctor. Again thanks for the replies and good luck wishing you good health!

6

I haven’t cut out all sugar but I’ve greatly limited my sugar intake mostly by eliminating all commercial juices and or sodas although I do juice my veggies and maybe a few fruits as well. I drink lots of green tea without any sweeteners of any kind. For the most part I just drink filtered water (and green tea) and don’t eat any sweets or deserts but I can’t just eliminate all the stuff that has sugar in it, like the occasional challah bread which I love. Trying my best to cut out all processed food too but takes quite an effort. I think it’s more like a trial and error thing to see what you can tolerate and what triggers a flare up.

7

Hi Jason! When you got sick with Strep, it was probably Mono. It sounds like you might have EBV which gives you symptoms a lot like Fibro and CFS. It would be worth looking into. I take 5000iu of VitD every day. I also do a FODMAP and autoimmune paleo diet. I have cut out sugar (sweeteners are worse so if you are going to go with sugar use the real stuff), carbs, milk products and I eat a lot of vegetables, some fruit, protein, etc. I have been on many various types of drugs and injections of all made me worse. Exercise and a good diet that is made for you would help. Gentle exercise though. Stretching and lengthening. I was diagnosed with Fibro in 2013 and can’t work anymore. I have come a long way and it is hard work just trying to figure this out because Fibro isn’t a thing, it is other illnesses working together to make us sick with so many symptoms that it is complicated. I just had a hormone balance/saliva test along with a complete Thyroid panel and ABO test, and a Lyme/Pathogen test done. I am really hoping these tests will give me some answers and direction. I feel bad for you because you are so young. My Mom has Fibro and she is now 84 and my Niece was just diagnosed this year with it. I hope you will find some answers and some relief. I also find having a counsellor to talk to who can also give you insight and coping skills is beneficial. It keeps me grounded as Fibro has changed my life 360 degrees along with my family. I wish the best for you!

8

Thanks, @blue1

I got my latest test results back from a second round of blood work. The only thing of note was that my results for 2 types of EBV were off the charts. Both should be around 17, one was 77 and the other 284. My GP said this is only showing I may have had EBV at sometime in my life but it does not mean that it is the cause of my fatigue.

I’m not sure if I believe that? The fatigue came on after having the misdiagnosed strep, which I can only believe was actually EBV/Mono.

Does anyone know if these high numbers are worth looking into more?

I have been referred to a neurologist, who I am going to see Monday. While my overall fatigue has not changed, my muscles have certainly become more tired in the past month - 6 weeks. I held my hand up to cover my eyes from the sun the other day and my arm got tired after about a minute. Thats not normal…

Will post an update after neurologist appt. if anyone has insight on EBV counts, I’d love to know if it’s something to consider more.

Thanks again,

9

The only sweetener I use is stevia. It’s not the same as sugar, chemically, so I just forgo everything that really needs sugar to work… like caramels. No more caramel, but after nearly two years, sugar-free, I really don’t miss it. I really thought I would.

I also use local, raw honey in the Fall, but that’s medicinal. It reduces my seasonal allergies enough that I don’t need the shots.

To break my addiction, I used Shakeology; a meal replacement shake. Something in it keeps the detox symptoms away. (Mine were pretty bad) After about 6 months, I stopped using Shakeology and didn’t experience any sugar cravings but I started using it again because it’s easy/good nutrition. Just add water.

10

Had basic neuro test today, with nothing obvious. Going back next week for an EMG test to test for muscle/nerve disorders. Based on those results might also get MRI.

Neurologist was not convinced it was something neurological. If not physical, metal or neuro related, where do I go next?

Always appreciate advice.

Thanks!

11

It is wonderful that you are getting everything checked and you have a doctor(s) that are willing to do that. I just did a whole slew of tests too and nothing out of the ordinary came back even though I had very high levels of Candida, Strep, and HPV6.
We are working on that though. We are still going forward but had to back off a bit because of my high sensitivities as the products I am using was making me more sick - a bad reaction of taking too much too soon. I don’t know what else to say Jason except keep doing what you are doing. I am at the point where I feel this is just the way it is. Not that I am quitting and will keep researching and experimenting and I have a few other areas to check but I am waiting until the new year giving my Naturopath and Osteopath a chance to try and make some sort of difference for me. We also moved this Aug so I have all new doctors which is a good thing but takes time to get adjusted to everything.

12

Hi @blue1 - Sorry to hear you’re still not feeling well. I am still waiting for the results of my blood work the neurologist asked for. I am very lucky that everything I’ve had done so far has been covered by insurance.

Like you, I am almost at the point of doing trial and error on my own. I started just yesterday a supplement called d-ribose. (https://www.webmd.com/vitamins-supplements/ingredientmono-827-ribose.aspx?activeingredientid=827) Have you heard of it? It’s supposed to help muscle strain and fatigue and is often prescribed to people who have recently undergone heart surgery as it is supposed to help repair heart muscle. it comes in a powdered form and you take it 2-3x a day in small doses. I have only been using it for 2 days so have no conclusive results as of now.

I also ordered SAM-e (https://www.webmd.com/vitamins-supplements/ingredientmono-786-same.aspx?activeingredientid=786&activeingredientname=same) suppliments which are supposed to help with depression and chronic fatigue. I think they arrive today and I will start them ASAP. Will also post about this.

Your move has probably made things difficult and added stress, but hopefully you can get back on track to see what can work for you.

Thanks for posting.

JMP

13

Hi @jasonp10128 ! I did try d-ribose for a few months and saw no difference. I exercise regularly and thought it would help with that too but it didn’t. I was advised by doctors not to try SAM-e because of being so sensitive. I hope these work for you because as we know, we are all different.

Good luck with the blood tests. I know when I got mine back I was hoping for something significant so that it would be definitive and perhaps we knew what to do. Not quite what I expected.

Take and good luck! I will keep an eye out for your posts. Sheri

14

Hello have you heard of chronic fatigue syndrome. Its one of my lovely illnesses I deal with. Not only do i havechronic pain with 3 back surgeries last one was a double fusion, fibro, anxiety,insomnia oh ya and endometreosis , thats totalky spelled wrong, anyway I live at a 3 3very day. P!ys every morni g for 6 years i feel like a car has hit me. Fibro can take a toll. Omg I also havechronic asthma 36 years. My whoke life. Ifeel 80 yet everyday I work hard to be a hoysewife and mom, and its a struggle but you have to take it slowly. Truat me I understand what do u mean exercise I can barely move. Epson salt bath is amaxing too for you guys out there

15

Dear Christina -

I’m so sorry to hear that you are struggling with your multiple illnesses. I can’t imagine how you must feel on a daily basis. I might suggest you try acupuncture as it can help with many of your issue including pain management, asthma and anxiety. You might also look into a therapy called QRS. It’s a mat that you lay on which uses electro magnetic waves.

After continued research, I am convinced that I do not suffer from Fibro. My symptoms are simply not on the same scale as what everyone here describes. I am still battling with feeling tired often but have found a few things to help. I stopped drinking both alcohol and caffeine. Crazy! They both have a dehydrating affect and alcohol is high in histamine which can lead to inflammation. I have also started graded exercises. I have a daily routine which gets me off the couch and moving. It really helps.

I do still often find I am just zapped, but I would like to try and look into meeting with a psychiatrist about anxiety. Stress and anxiety are somewhat everpresent for me. I have a high stress job, live in NYC, and am doing a home renovation. It’s a lot.

I will post again soon. Hope everyone else is well. Spring weather can also cure a multitude of ailments… here’s to hoping it comes quickly!

Best,

16

Hi Jason thx for responding… Yes its horrible what I deal with on a daily base… I just want to say of course ive tried acupuncture. That was the first thing b4 my first back surgery. My last one was so severe i asked my bf to smother me with a pillow cuz they couldn’t control pain. I was at UCSD in san diego best hospital… Ya right worst experience of my life . I was there 7 days. If anyone is ever interested in knowing what they did to me email me. The sad thing is not even 12 hours b4 surgery i talked to my surgeon whos done this 2 ither tines to me and said you r in goid hands tina. O g I though I was in hell whern i woke up … Having 2 rods with screws etc… That comes with double fusion. Thx for listening​:raised_hands::raised_hands::raised_hands::innocent:

17

It is believed the fibro aned chronic fatigue are closely linked, but researchers and doctors still know very little.

I posted this on another post…

  • Chronic fatigue is thought to be caused by a virus, like mono, Epstein-Barr virus, or herpes virus. But not everyone will get chronic fatigue because they have had a virus. In addition, chronic fatigue can cause immune system problems.

  • Fibro is thought to be caused by an injury- like a car accident and in my case I broke my tail bone and injured my neck. Also, it is thought to be caused by trauma (emotional or physical- and yes, that is my case, too), having another chronic pain disease like lupus or rheumatoid arthritis- or even chronic back pain, gene inheritance, or infections (I used to get a lot of sinus infections). There is some evidence of immune system issues.

this is a good video concerning fibro, but the tender points are not required now for a diagnosis, but all quandrants of the body are usually required:https://www.youtube.com/watch?v=l5uJcWqWGw8
https://www.youtube.com/watch?v=NCuGgh1ySzs

What is chronic fatigue: https://www.youtube.com/watch?v=tVSaLP5RTOo
A documentary on chronic fatigue: https://www.youtube.com/watch?v=Fb3yp4uJhq0

Basically, fibro has the main symptom of pain, then fatigue.
CFS/ME has the main symptom of fatigue, then pain.

Hope this helps and you get more support. Blessings!

18

Question??? Do all of the supplements you’re taking help?!?!?!