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Symptoms and Questions.

Posted , 4 users are following.

willthethrill18
willthethrill18

Hey guys. Still unsure if I have CFS, but im over that topic now. Parents refuse to take me to a specialist because it costs money and whats the point if there is no cure. Anyways, my symptoms the last 2 months have just been headaches every day, fatigued all the time - nothing else really bothers me much. I take advil but it just makes the head ache like a little less achey hard to explain lol. Any way to get rid of them for good? Or maybe just have them less per week? I went gluten free and eat a bit healthier already. ALSO, I have some questions. In June, I got drunk and felt HORRID for 2 months after drinking. (CFS alcohol intolerance, beer intolerance?) I then got drunk two weekends ago and yesterday and felt horrible the day after, but not too bad. When I drink I feel fine and it is great. Why am I suddenly not feeling HORRIBLE after drinking like that time in June? Also, I can play hours of tennis and feel ok. So Im wondering, what does Post Exertional Malaise supposed to feel like? I mean yeah I am tired 2 days later with my usual headache that I have every day, but I dont exactly feel any other symptoms from exersizing...Don't get me wrong, it could very well not be CFS, but if it is, I just would like to know how you feel after excersize. Ive been dealing with the fatigue an symptom issue for a little over 6 months by the way. Had all tests, nothing shows up. I can only say that headaches and frequent tiredness are my problems. ALSO WEIRD FACT: Around 6:30ish or when I am ready to go out with friends at night I feel energetic for a couple of hours. I have no trouble sleeping either. And my headaches are much less severe when Im around people and just hanging out with friends. Its all very confusing. Can I get a vote going if I should ask my therapist tomorrow if he should call my parents to speak to them about seeing a CFS specialist? :D. I just wanna see one it feels right. Also, what illness started your CFS. If Ive got it, it may have been a mix of Flu/Strep throat. 

0 likes, 14 replies

14 Replies

  • Lizzlizz
    Lizzlizz willthethrill18

    Posted

    Hey will not sure how old you are but 100% anything you can do to get your folks on side will help esp if you might be ill for a while and are young enough to be depending on them. I'm 31 and have had to move from another country back home to my mums to get better. Family support if you have it is worth it's weight in gold!!! Are you sure you have had all the tests btw? As Cfs is only reached by exclusion and is not a disease in itself it's a "umbrella" term for a range if symtoms with out a known cause. Is you therapist due to cfs? I'm only asking as many fatigue clinics don't offer much but I can help point you towards some doctors and more info about possibles cause and possible treatments (but it's not a one trick fits all) You also mention you energy level is better early evening have you looked into adrenal fatigue? You might also be lucky and just experiencing what gps call post viral syndrome where it takes you a long time to recover but you body eventually gets there after some months, esp if you feel you are improving. What ever you decide it's your body your health and your life so make the choice YOU feel happy with.
    • willthethrill18
      willthethrill18 Lizzlizz

      Posted

      Thanks for the swift reply! I'm only 17 so I listen to them. My therapist is just a normal therapist. I'll talk to him tomorrow. I have college next august so I want to be diagnosed or not, before I leave so I know what I'm up against :D. I'll update you
    • willthethrill18
      willthethrill18 Lizzlizz

      Posted

      I looked up adrenal fatigue and I have never seen something relate to me so much in my life. Is that different than CFS? It's pretty shocking how accurate it sounds
    • olivia3636
      olivia3636 willthethrill18

      Posted

      Yes, adrenal fatigue is different from CFS. Adrenal fatigue could be a symptom though. Adrenal fatigue is caused by certain things. Tumors or if you have a genetic or congenital defect causing your adrenal to function improperly. If you feel like your symptoms match up with adrenal fatigue, get some adrenal gland tests done by your doctor. Your adrenal glands also heavily affect your thyroid, so if anything shows up from the adrenal tests, I would also recommended in depth thyroid tests. 
  • olivia3636
    olivia3636 willthethrill18

    Posted

    It sounds like you are in the beginning stages of CFS and only have a mild case. This syndrome, at least for me, has progressively gotten worse over time. I would HIGHLY recommended going to see a CFS specialist now while you're in the early stages and probably don't have any permanent damage. To answer your question about post exertional malaise. It feels like every drop of energy your body normally produces has just disappeared. I feel like my limbs are spaghetti. The little energy I do have I focus on breathing and keeping my heart steady. When my body has no energy, neither does my heart(the heart is a muscle). It feels like the heart has no energy to pump blood. I can't walk and barely stand up. It takes several days to recover from this and this low energy feeling(fatigue) is debilitating. When I first started to get sick and even now during my good days, I get tons of energy and focus around 6 pm as well. As for the drinking. I would recommend staying away from drinking all together. CFS is different everyday. Some days I can't get out of the bed and the next day I could go to the gym. The severity of the symptoms come in waves. Sometimes something will be worse one time and be perfectly fine the next. It just depends. I would start doing a daily diary of how you feel, what you eat, what time you wake up and go to bed. How your sleep was. The SOONER you start helping yourself, the better. The easier it will be to come out of the CFS hole. Do not let it suck you in, because once you start falling, its very hard to stop. Good luck on getting a specialist. 
    • willthethrill18
      willthethrill18 olivia3636

      Posted

      Thanks for the reply! I'll get tested for adrenal and report back. As for the CFS getting worse. Mine seemed to be getting worse and worse but we found out I had tonsilittis the whole time so I got my tonsils removed. After that (almost 2 months ago) I felt a dramatic increase in my health. So whatever I got has definetly improved rather than worsen. 
  • Lizzlizz
    Lizzlizz willthethrill18

    Posted

    Completely agree with Olivia - good luck and keep us updated - lots of helpful understanding people on here - who understand what you are going through! The earlier you deal with this the better chance you have of a faster recovery!
  • Lizzlizz
    Lizzlizz willthethrill18

    Posted

    Just to add quickly some doctors have different opinions about AF so find one that deals with it to give you the most help.
    • willthethrill18
      willthethrill18 Lizzlizz

      Posted

      Will do! I'll do the testing first so I can avoid seeing two specialists. and by the way, when people say like "1 year" with chronic fatigue syndrome- do they mean 1 year diagnosed or 1 year feeling symptoms starting 
    • Lizzlizz
      Lizzlizz willthethrill18

      Posted

      Symptoms as you have to have had them for six months or longer to be diagnosed. Glad your not giving up and looking into different possibilities.
  • joanne3853
    joanne3853 willthethrill18

    Posted

    Hi, mine cfs was kicked off thro other conditions think it goes along with other conditions but specialists say it's a condition on its own.i had glandular fever at 30 it could of been that perhaps . It's diffucult to work out I've been ill since I was a teenager. I would defiantly look into cfs and advise to stay away from alcahol it's a trigger . I don't have wheat and stay lactose free it helps. 
    • willthethrill18
      willthethrill18 joanne3853

      Posted

      Yep I'm gluten free as of 3 weeks ago it def helps! I drink gluten free vodka when I drink which isn't too often. 
  • olivia3636
    olivia3636 willthethrill18

    Posted

    The tonsolitis probably caused a significant chonric increase in your cortisol. That's where getting your adrenal-pituatary-thyroid axis a very good idea. I had a sinus infection for four years. Had sinus surgery and got it removed and fixed my sinuses so I wouldn't get one again. I got better too, but I got worse again and again. It's about finding a balance between sleep, rest, diet, very light activity(such as a walk), and keeping yourself happy. Remove things and people that are not healthy in your life. It's very hard to do, but worth it. It's a very hard balance to find. I can tell you that after 6 years of being sick I'm still significantly struggling with finding my balance. Anyway, good luck. I hope you get better very soon. 
    • willthethrill18
      willthethrill18 olivia3636

      Posted

      Thanks olivia. Parent finally succumbed to seeing a specialist. Will test for adrenal issues too. It's just weird because I can honestly say that I can excersize and work out no problem without post malaise. I just have headaches and I'm tired so I'm often just not wanting to excersize. Whatever I've got it is definetly in a mild form. Will report back. Take care too.
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