Old 03-13-2016, 08:02 PM #1 (permalink)
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Default Coping with the chronic fatigue/brain fog of fibro

I'm 20 years old and was diagnosed with fibro when I was 12 after a period of intense headaches and fatigue and missing a year of school. Ive had a year or so at a time since then where my symptoms haven't been as bad, but since I was about 17 it's been pretty much constant.

My rheumatologist is helpful in trying to find something to work for pain, but to be completely honest, I can mostly deal with chronic pain. Yea it sucks, but what really, really gets to me, being fairly young and ambitious and having dropped out of school because of it, is the fatigue and "brain fog."

I've always been very academic and i think im very smart, which is pretty much what i value most about myself. I like to write and create. But especially lately I've had no energy ever, mental or physical. I can't focus, i can barely make myself get out of bed to do anything other than watch TV.

It brings upon a lot of depression, which I've gotten pretty good at handling, but my state of mind seems to reach a plateau when i realize no matter how i think, im never gonna have as much energy as I'd like.

Ive read a bit about fibro patients being prescribed ADHD and even narcolepsy meds to combat this. Im wondering what your takes are on this idea, cause im not too sure about being medicated like that.

Im also just curious for some input from others experiencing this. How do you maintain your interests and hobbies and keep your mind engaged when your energy is often so limited? What are your days typically like? I feel a bit self conscious about staying in on netflix so often, like its not what i shluld be doing, but sometimes it's hard to focus and have the willpower to do anything else. Then i get kind of self hating and start feeling lazy....long story short, im really struggling to deal with the effects of this.

Sorry for the length and any spelling errors, i typed this ob my ohone. I look forward to hearing any input!
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Old 03-13-2016, 11:51 PM #2 (permalink)
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Default Re: Coping with the chronic fatigue/brain fog of fibro

I am sorry you had to drop out of school because of brain fog, fatigue that results in the brain with a feeling of weakness. This reduces concentration and causes social isolation hence your dropping out of school. I also had a similar condition. Most times, I felt tired and cloudy and even walking posed a problem. I thought I had fibromyalgia with faltigue syndrome (FMS) but it usually subsided after a long night sleep then commenced the next day. I reduced my caffeine intake and tried to view life more positively and the problem went away on its own before I could be diagnosed with fibromyalgia.
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Old 03-13-2016, 11:58 PM #3 (permalink)
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Default Re: Coping with the chronic fatigue/brain fog of fibro

I've been told a lot to just go on antidepressants and it might get better, but I've gone through periods of deep depression and recently have felt very good about how far I've come on my own to having a positive mindset. No matter how much less depressed I can get, I reach a plateau where I realize I still have no energy or focus. In the mornings I feel like death, then even a few hours after through the rest of the day it's really difficult to make myself do anything. I've been trying to walk and write more, but I can only do so for so long before I get too tired or lose focus.
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Old 03-14-2016, 01:09 AM #4 (permalink)
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Default Re: Coping with the chronic fatigue/brain fog of fibro

I'm so sorry you are going through this at such a young age. I'm a bit older and had a pretty full life, both career and with sports. I believe I had fibro and chronic fatigue even as a teenager, but I was able to push through and juggle my life based on the kind of energy I had each day. I am 51 now and can no longer work and it was a real challenge to accept that I couldn't push through or juggle anymore. I just didn't have it in me. It sounds like you are there now. I went on a journey of mourning the loss of who I was and learning to embrace who I am today. I imagine you have things you did when you were younger that you can no longer do, so I might suggest you trying what I did.

Take the time to look back on your young life and mourn what you can no longer do. Look at who you are today and what you are capable of and accept it. Quit beating yourself up if you only have energy to watch Netflix. I believe when we beat ourselves up, we only become more down and depressed. I have tried various medications. Some worked okay, but had side effects that I couldn't deal with, others didn't work good for me. I find that I need a daily anti inflammatory because I have arthritis throughout my spine, hands, feet and I am now thinking my elbows and shoulders. If I go off it, I am at about a 9 out of 10 pain level. We can't sustain that high of pain for long. It's too much, so I stay on it. I have hydrocodone that works on me. I don't take it daily, every day of the year, but I do take it for periods of time, when my pain is at its worst. Some say Tramadol works great for them. I didn't notice that. I have heard of other medications that have recently come out. I'm game to try them when I can get them at a reasonable price.

I suffer from severe fatigue also and some days I just can't even get out of bed. I've had to work with my 14 year old to help make sure either I get her to school, or we get one of my now back-ups.

In my journey, I have become a much more happy person. Am I any better? Nope, probably struggle more than when I started my journey. I think that because I no longer fight my health and just roll with what I'm capable of doing for the day, I find I'm content. I have worked to surround myself with positive friends and family and won't let others treat me like I'm less than. Having health issues does not mean that you are less than. On good days, I am productive. I pace myself so I don't overdo (usually). You may be suffering from depression. If you are, taking an antidepressant is not the end of the world. My moto is, if it helps me have quality of life, I'll try it. Some antidepressants actually have side affects that reduce pain, like Amitryptoline. I would have probably still been taking that one, because it did work, but it gave me horrible dry mouth. I tried a lot of different things to get over it and never could. Others don't have that problem. I have good teeth so when my dentist flipped and told me how bad dry mouth is for my teeth, I finally went off of it.

I currently take a low dose of Nortryptoline (I'm sure I'm not spelling these right). I was put on it because it is known to help with IBS issues, which I have. The added benefit? It's an antidepressant if one needed it, but the biggest benefit for me is that it helps me to sleep. I have severe insomnia.

My long-winded comments about the meds is that, don't rule them all out. Weigh the pros and cons. Be open to try something if you hear from others that it is beneficial. Learning to accept you for who you are and giving yourself a positive life is so important......Much more so at your age! You have a lot more years on this earth, so make them count. If you have a goal, break the goal down into manageable pieces and do smaller/shorter tasks when you can muster up a half hour or even 10 minutes. When I want to get something accomplished and my fatigue isn't too awful, I throw on a movie, watch for 20 minutes, clean for 10-15 minutes, watch for 20-30 minutes, etc, etc.

Find your groove! You can do this! Gentle hugs...
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Old 03-18-2016, 03:11 PM #5 (permalink)
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Default Re: Coping with the chronic fatigue/brain fog of fibro

Just a quick reply for now, because I'm having a rough day, but I'm sure we'll talk again. Perhaps your youth will work in your favor, and new treatments will be developed that will provide you with relief from your symptoms. I am fortunate to have finished my schooling before my full blown Fibromyalgia and chronic fatigue hit, but like many, I've had the symptoms for most of my life. Like @terbaer, I was able to push through for years, and do what I needed, to accomplish what needed to be done. Some days are better than others, and I have had periods of relief from the symptoms, as well as flares. Don't give up, because time is on your side, and if you keep trying new things, hopefully at least one of them will work for you.
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Old 03-21-2016, 09:48 AM #6 (permalink)
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Default Re: Coping with the chronic fatigue/brain fog of fibro

That is a hope that never fades and I definitely agree with what you say WarriorPrincess, one's youth does work in our behalf because new treatments are being developed and in some years things can be very much different. We should keep trying until we find what works best for us.
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Old 03-24-2016, 04:26 PM #7 (permalink)
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Default Re: Coping with the chronic fatigue/brain fog of fibro

Depression seems to come from a lot of the symptoms that sufferers have to deal with on a daily basis. I work with individuals who have Fibromyalgia and many of them have times when they are severely depressed, and I have seen anything from drugs to therapy be prescribed to treat it, to varying degrees of success. I would just say to stay strong and find someone that you can talk to and try to stay positive.
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Old 03-25-2016, 04:23 AM #8 (permalink)
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Default Re: Coping with the chronic fatigue/brain fog of fibro

We've had no luck with doctors and incredible luck with supplements. My daughter has gone from almost completely bedbound, in a dark room with blankets over her head, to being able to work shifts that are as little as five or as long as eight hours long, for four days a week, from using supplements. I put a post under the alternative medicine board on what we use. When she stops the supplements, she gets worse again. She's not cured, but it really helps. She says she thinks the fish oil (about six caps a day) helps with her mental clarity, and other supplements like Twinlabs Stress B, B12 patches, and adaptagens like Ashwaganda. She had the MTHFR gene, and uses L-5-MTHF (a bioavailable B vitamin because the genetic mutation stops her from using folic acid as efficiently as normal people) as well. A lot of people with Fibro and CFS have that genetic mutation. Have you had it checked? A doctor can check it, or you can do a 23andMe test to find out.

She's not much younger than you, so you remind me a bit of her. I hope you find something that works.
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Old 03-25-2016, 04:37 AM #9 (permalink)
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Default Re: Coping with the chronic fatigue/brain fog of fibro

I forgot to mention in my other reply, that my daughter has had good luck improving her energy and mental clarity by changing her diet for a short period, eliminating gluten and dairy as much as possible, using whole foods and avoiding additives and excess sugar. She will switch for a week or so, to a diet of things like fruit smoothies, sometimes with protein powder, beans and brown rice or quinoa with lime and cilantro and mexican spices (chipotle is a good meal out), salads, etc. for about a week or so. She snacks on dried apricots a lot. It helps a lot but she can't sustain it, so she uses it as a "pick me up".

After all that I"ve researched, it seems clear that the immune system is a large part of this, and food is part of what is triggering some of the immune responses. Reducing immune triggers helps to reduce the fatigue and brain fog. Changing diet, using air cleaners, reducing dust, avoiding pollen, reducing contact with animals -- all of it can help reduce the cumulative load and reduce the immune response. Sinus rinses help some, and First Defense nasal filters give a nice vacation at night from the allergens, if you can tolerate the nasal filters. High dose vitamin C like Perque seems to help, too.
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Old 03-25-2016, 10:09 AM #10 (permalink)
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Default Re: Coping with the chronic fatigue/brain fog of fibro

Hi there, sweetie. So sorry to hear you have to deal with this at such a young age I had a similar experience when I was younger. Sadly this is very normal for people with our problem... you just have to take things one day at a time, that is how I deal with all this, including my brain fog and mental confusion. Some days you just have to accept things will not be ok, during those days you need to slow down, but you can rest assured that will pass I think by now you have learnt to cope with this well, but brain fog is very different... have you thought of seeing a neurologist and see what he has to say? Maybe he can recomend you something? I am not a fan of meds, but you are so young and you still got so much to do...
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Old 03-28-2016, 12:50 PM #11 (permalink)
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Default Re: Coping with the chronic fatigue/brain fog of fibro

I agree with a lot of what @Gryfalcon mentioned. I've learned through trial and error over the years some things that work for me, as far as helping manage my symptoms, but I'm always interested to learn new things. As @Trellum stated, it's important to remember that even at the worst of times, things will get better. 'This too shall pass' has gotten me through some really rough times. I know for sure that my immune system is involved, and I'm in the throes of a major flare right now from the pollen. I won't give up my pets, but I do use air cleaners, and I limit my exposure to chemicals as much as possible. Keep the faith, and remember it's o.k. to take it easy when you're going through a rough patch. Forums and online and/or in person support groups can be very helpful, especially if you don't have people around you who understand.
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Old 03-29-2016, 09:27 AM #12 (permalink)
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Default Re: Coping with the chronic fatigue/brain fog of fibro

I totally agree with that as we all need someone to listen to us and to who we can talk to, so nothing like our forum here for support.
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Old 04-06-2016, 05:23 PM #13 (permalink)
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Default Re: Coping with the chronic fatigue/brain fog of fibro

Terbaer, that was a very inspiring post! So inspiring that I think I will benefit from reading it daily to keep me uplifted!
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Old 04-07-2016, 09:21 AM #14 (permalink)
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Default Re: Coping with the chronic fatigue/brain fog of fibro

Not neglecting the physical aspect we should in fact try to motivate ourselves and be inspired. I am not saying it's easy, but can certainly help.
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Old 05-24-2016, 06:24 PM #15 (permalink)
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Default Re: Coping with the chronic fatigue/brain fog of fibro

I am inspired just to be here in this forum first of all. I was finally diagnosed with depression and fibromyalgia last year in December. I am back to work but I only work from home remotely. I am still not used to the chronic pain and fatigue but at least now it is manageable. I was so out of sorts trying to deal with my symptoms on my own. One day, I hit my breaking point while my Mother was ill and completely broke down in tears. I was almost ashamed to admit to the pain I was in because my family depends on me so much. I felt that I was being weak not working through the pain and it was beneath me to admit to being so tired so much. I am far beyond that now because peace of mind is more important than my pride any day.
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