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My CFS story what can I do?

Posted , 8 users are following.

ME44
ME44

I am a 19 year old guy who has been having the following symptoms: headache, sore throat, muscle pains (worst in groin, neck, head, joints, armpits, chest), fatigue, trouble concentrating, sinus pain, fatigue, unrefreshing sleep, and an upset stomach. I started experiencing all of this after I got mono about 3 years ago in my junior year of High School. Due to all of these symptoms I missed many months of school and failed many of my classes. I just couldn't concentrate at all, felt exhausted all of the time, had pain everywhere, and felt like I constantly had a virus. The doctors did many tests but the only thing that came back positive was mono. They said that mono usually doesn't last this long, as in my case about a year, but sometimes it does and that I would eventually get over it. Fortunately, towards the end of my senior year I mostly got over it and managed to graduate High School. I would still feel tired and achy but my symptoms were less severe and I did not have them all of the time. This period of remission lasted for about 8 months and I managed to work while going to community college.

Then last fall about 7 months ago and up to this today I do not feel well again. I got fired from my job and failed all of my community college classes. The thing that bothers me the most is the muscle pain. I have it almost all of the time. Sometimes the pain is just a dull uncomfortable ache but other times it is an intolerable pain which makes it hard to do anything and to care about anything. I just wish it would stop. The pain is full body but primarily in the lymphatic system (groin, head, joints, armpits, chest, and throat). The fatigue has gotten better since High School but still persists. I also still have the other symptoms that I listed in the first paragraph. I noticed that the symptoms get worse after doing things like exercising, going to school, working, shopping, and doing chores around the house. Also I do not fell well after standing. I feel dizzy and have to lean on something if I am standing for too long.

I told all of this to a chronic fatigue specialist and he diagnosed me with CFS and POTS. He gave me atenolol to help with the dizziness caused by POTS. I think that this has been helping with the dizziness but I have still been having muscle aches, trouble concentrating, headaches, and a sore throat. He recommended taking Midodrine, Florinef, Lexapro, Mestinon, or Clonidine. Has anyone felt better after taking these medications or are there others that work well for you? Also do you think that I have CFS/ POTS or could it be something else? Sorry for the long post and I would love to hear your responses if you have went through something similar.

1 like, 21 replies

21 Replies

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  • erika_007
    erika_007 ME44

    Posted

    I am sorry that you are dealing with this. I myself suffer from CFS. My CFS is getting much better with traditional Chinese medicine, I refused to feel miserable and had to try something else rather than popping pills everyday and feeling that I was literally dying! I also heard someone else in here that is doing much better with Homeopathy medicine. Do some research and hopefully you are able to find a trust worthy one. Good luck! ALWAYS check with your doctor too!
    • ME44
      ME44 erika_007

      Posted

      Thanks Erika glad to hear that this has been helping you. I don't like the idea of taking pill either. I've never tried traditonal medicine and will definitely look in to it!
  • Beverley_01
    Beverley_01 ME44

    Posted

    Hi all,

    Just wanted to add re the anti depressants, my gp stated that they sometimes help people with cfs/me regardless. Think it is due to the fact they alter brain chemistry.

    With regard the graded exercise and cbt. I feel if this was done correctly, it would help but, time limited services mean it's a sticking plaster approach. If we could be taken away for a month and slowly reintroduce activity, this could really help I feel.

    Beverley

  • dawn94288
    dawn94288 ME44

    Posted

    As you probably already know, it is so typical to have mono and then have that trgger CFS/ME.  I'm still searching for answers myself, and have literally spent thousands of dollars  doing so, just in the last year.  I am not going to claim that I am completely better, but I have found some answers.  One I wanted to mention is that both my sister and I have reduced our muscle pain by going off of eating foods that are grown on Nightshade plants.  Some people are susceptible to the poisons they have, while most are not.  You might want to look it up online.  I've had to eliminate tomatoes, potatoes, and eggplant etc. from my diet.

    I am so confused about the exercise issue.  I'm amazed that you do so much!  I could never!  I take a very short walk almost every morning almost no matter how i am doing. But there are some mornings when I just can't manage it.

    Recently a family member insuated that if I excersized heavily I could get better.  I hate not having understanding and support from many people, and am so thankful for my sweet husband.  Do you have support?

    • ME44
      ME44 dawn94288

      Posted

      Yeah I know that is very true. I felt completly fine before getting mono. It must have changed something in my body, I just don't know what. Studies have shown that other viruses can also possibly trigger CFS. This makes me think that CFS has to do with the immune system. I find your Nightshade plants problem very interesting. My dad has a similar issue and is sensitive to a lot of foods. They bring on muscle aches for him. He is allergic to gluten, milk, and soy. He's also allergic to a lot of other obscure food that I can't remember like yellow dye #5. This causes him to never eat processed foods or eat out and only eat meat and vegetables. I don't have these food allergy issues but other people with CFS have them.

      Your family member doesn't understand. Doing heavy exercise like that will make you worse. You should do minimal exercise and build it up gradually.  I would listen to your body and stop when your symptoms come. Some people with CFS can do some exercise but others can do none at all. I definitely have been overdoing it and making myself worse.

      That's great that you have some support. I find that a lot of people just don't understand. I find this especially with people who I don't know that well and am not that close to. I'm very thankful of my parents. My dad understands because he has similar CFS symptoms brought on by food allergires and my mom is very understanding. I hate to say it but if I did not have them I might have killed myself back in High School. I hated myself and thought there was no future. I constantly would idiolize suicide and death and it brought me lots of pleasure. Knowing that there were people who loved me made me not want to kill myself because of the pain that it would bring them. I was never diagnosed with any mental illness and am completly fine now though. Thank you for your response and I found your Nightshade plant comment very interesting. I cut out milk out of my diet but will look into this too. Hope you feel better! 

  • Gized
    Gized ME44

    Posted

    I am pleased you have diagnosed. You now know what it is. I have tried some meds. Had severe nightmares. No more meds for me. I put up with pain and in agony. Better than meds for me.

    Take care and try and find what helps you.

    Gized

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