Chronic Fatigue Syndrome Support Group

Chronic Fatigue Syndrome (ME/CFS) describes a sense of exhaustion and post-exertion malaise, even when you have gotten enough rest and sleep. The disease is characterized by six months of incapacitating fatigue experienced as profound exhaustion and extremely poor stamina, and problems with concentration and short-term memory. The cause is unknown, but it is a...

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kaylac13 01/10/2017

Hi everyone, my name is Kayla and I am 18 years old (soon to be 19). I am new to this group so I thouhgt I'd do a little introduction and try to get to know some of you as well! My story is kind of fuzzy, since I've expereinced some form of health problems my entire life. I was born 6 weeks premature, and right off the bat I had issues with digestion and respiration. I was diagnosed with asthma and was on inhalers and nebulizers until I was about 9 or 10, when my symptoms started to go away. I also struggled with severe "growing pains" for as long as I can remember, these pains in my legs and hips would leave me writhing on the floor and sobbing in pain for hours. I was a very active child, taking part in figure skating, gymnastics, softball, basketball, track and field, and so many other sports and activities. However, in the spring of grade 6 (2010), I started getting bad localized knee pain and my stamina had greatly decreased despite continuing with the same physical activity level I had always partaken in. I went to my doctor who diagnosed me with Patellofemoral Pain Syndrome and told me just to take it easy during my sports until it got better. Over the next few years my symptoms grew to more than just knee pain. By grade 8 I had pain in both knees and hips, my legs just felt weak in general, and I was unable to stand for more than a few minutes at a time without feeling like my legs could collapse. I saw an orthopedic surgeon who told me that he agreed with my original doctor, that I just had PFPS and a mild case of scoliosis. Over the next year or so I had to quit some of the sport I played because of how bad my health was getting. I bounced back and forth between doctors, who at that point all decided that there was nothing physically wrong with me and that it was a bad case of teenage angst and attention seeking. I went to physical therapy for a year and a half to try to strengthen my legs muscles and to decrease my knee pain, but it didnt really help. I started missing almost a week of school per month because of how tired I would get from even the simplest activities, but my mom and my doctors didnt believe that there was something seriously wrong with me. By grade 10 I had to quit my last and favourite sport, softball. I simply could no longer keep up with my team mates, I was hardly able to do the warm up, let alone take part in tournaments and provincials. By this point I had many blood tests done, ranging from ANA, iron, vitamin deficiencies, CBC's, Creatine, Blood Glucose, and many more. I also had a nuclear bone scan done to seach for arthritis or bone tumours, which thankfully did not show up anything. All of my tests came back negative time and time again, which was very frustrating since that meant that I didnt have any answers, nor did I have any potential treatments. My doctors prescribed me many different types of antidepressants thinking I was just depressed, but all of them either had no effect at all or made me feel even worse. Finally in August of 2015 my doctor tested me for Mycoplasma Pneumonia Infection, which came back positive as a chronic form. I started oral antibiotics and stayed on them for about 6-7 months with no resaults at all besides some bad stomach side effects. We decided taht since they werent helping and were only making me feel worse that we would just stop them. Since then I have been on no treatment besides some over the counter vitamins and supplements, and I can feel myself steadily getting worse. I have recently started my first year of university and being away from home while having to juggle very difficult classes and be independent has made my fatigue even worse than before. However, I can not allow my grades to slip otherwise I will lose my scholarships, so even when I am not feeling well at all I force myself to goto class and try my best. I have been to the health clinic on campus, and after taking my background and looking over all the tests i've had done in the past one of the doctors here referred me to a rheumatologist. I am scheduled to see the rheumatologist in April, so I have my fingers crossed that after suffering for over 6 years I may finally find answers or atleast some sort of relief.

Sorry that this was so long! But I hope to connect with some of you soon, I have yet to find many people around my age who suffer from this disease.

I hope you all have a lovely evening,

Love Kayla from British Columbia, Canada

triunfadora 01/11/2017

Hello, dear. I'm so glad you found this group. There isn't a lot of activity on the boards sometimes, but we send a lot of hugs and write journals. So, friend some people and get to know everyone. There is so much support here. Your story sounds like it's been a difficult journey. I got ME/CFS when I was 16, and even before that, I was not well as a child. So, I totally understand what you are saying. I went to 5 doctors before I was finally diagnosed at Johns Hopkins Hospital in Baltimore. It is a sad reality that many of us go to many doctors before finding out what is wrong with us. Keep pressing in to this issue. You need to know what is happening. Don't let anyone tell you that you are crazy or it's all in your head. You know what you are experiencing. You know your body. If you have been fatigued for over 6 months and you feel particularly ill after exertion, ask a doctor about ME/CFS. Some doctors are now calling it SEID (Sustained Exertional Intolerance Disease). Most of us here think that name isn't any better than what we already had. But anyway, there are no exact tests for ME/CFS, but they can rule out other things and come to a diagnosis. Do not give up. You deserve to have answers. I just paused for a moment and breathed in and out and held you up to the light of God. I pray you find what you need. Many blessings.

kaylac13 01/12/2017

Thank you so much @triunfadora :) I just read over my post again and realized that I didn't mention that I was diagnosed with CFS about 2 years ago and since then its just been trying to rule out possible causes to find a good treatment plan. Thank you for your support and advice

triunfadora 01/14/2017

Oh, good. That is good that you have a place to start. The diagnosis is important. There are no agreed-upon treatments, but different people have found help in different ways. I hope you find some ideas of where to go from here. Stay strong.

blancorivergirl 01/14/2017

Kayla, welcome to the group. You will find good people here and all kinds of ideas, suggestions, etc. A lot of people suffering with these types of conditions find that cleaning up their diets helps somewhat (no sugar, no processed foods, no dairy, etc. ) You may have experimented with diet already. I have been doing allergy shots for over a year now and I think they have helped my chronic headaches and fatigue. I get a lot of body pain too. And most of the time ibuprofen takes care of it. Sometimes I take prednisone for it. And sometimes I meditate, breath deeply and think about my breath taking the blood loaded with oxygen and other nutrients to the places that hurt. Sometimes that method relaxes my muscles and the pain goes away. Have you tried alternative forms of medicine such as acupuncture? There are so many alternatives. Never stop trying. Glad you are here. Renee

kaylac13 01/14/2017

Thank you Renee :) I have tried an elimination diet to see if any specific foods were affecting me, and after being off of gluten, dairy, sugar, and anything processed for about 6 months I wasn't feeling any better. Do you have specific allergies that you're receiving the shots for? I haven't heard of people doing g that for CFS before. And I've gotten to the point where I have become immune to the effects of ibuprofen and acetaminophen so they no longer help me. I take aleve mostly, or if the pain gets really bad I have some higher strength prescribed Naproxen which seems to help quite a bit. I have tried elctroaccupuncture, but I passed out during it and haven't tried it since. Thanks so much for your concern and your suggestion

Storm13 01/16/2017

I can't really add too much about the medical part of your post, I am still in the midst of trying to find out what's going on with me myself but you do seem to have really good doctors who want to help you which is great. Now for some advice about your education pursuits- PRIORITIZE. You may have to face the reality that some of the things you like to do just aren't doABLE right now, it may not be forever- but you mentioned a scholarship and when I was in undergrad I was in a similar situation and had to cut back on some activites in order to focus on keeping my grades. Your health is your first priority because the better you will feel the more you will be able to do the necessary. However, since you are a college student and need to keep up your grades make sure you are balancing class, study time in a way that does not overwhelm you TOO MUCH. You probably have your academic schedule already right? So really it's the time in between classes I had health issues while in undergrad and my biggest help was EMOTIONAL SUPPORT (therapy, support groups, friends). Do you live on campus with a roomate? You need as much support from the people in your life more than ever if you want to maintain, good academic standing of your scholarship while going through major health issues. Basically, don't get to where I was in my sophomore year where I almost flunked out because I isolated myself and due to my health issues including my mental health. It wasnt until I got into my colleges behavioral health center and the many support groups they offered that I became emotionally healthy again. If you already have a great group of friends/family then that's awesome. But if you are an introvert like me that had a hard time making friends, now would be a good time as ever to meet new people in person who may be going through similar things and they can probably help you with coping strategies to juggle academics and dealing with health issues. Remember PRIORITIZE, your health, academics and an active social life, which makes university fun.

Bluebonnet08 01/28/2017

Hi Kayla,
I'm so sorry to hear that you are going through this at such a young age. I can kind of relate, because my problems started in graduate school and really impacted my ability to finish my coursework. Some things I can recommend are talking to your professors and seeing if you can do any classes as more of an independent study. This way you could minimize the time when you have to walk to classes. My professors were really accomadating to me in this regard. I also took less coursework and took 3 years instead of 2 to complete my degree. You can get a handicap placard from the disability office and minimize walking on campus.
I would also recommend getting a fitbit so you can see how many steps you are doing and how high your HR is getting each day! It really does make a difference to monitor that.
Have you had any type of autonomic testing? It's something I would look into, as CFS is closely related to many autonomic problems like POTS which can be treated.
Wish you the best. :)

moaner 01/31/2017

Hi Kayla, I'm new to the group also. Hope we can navigate site easy and I hope you day goes good

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