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Treatments that have helped me - borderline chronic fatigue syndrome

Posted , 5 users are following.

reena56292
reena56292

Hi all.

Ive been following these forums for a while now and joined quite some time ago when things were that terrible for me that i couldnt leave my house. Honestly I have never experienced such a low in my entire life where my fatigue was so incredibly bad that I could not function.

I just wanted to quickly share what has helped me since then (6 or so months ago) as i really do empathise with people going through perhaps what i went through. Now, before i go on i was told i had 'borderline' chronic fatigue syndrome, more than likely because my main problem was the fatigue and not the accompanying flu symptoms. So I believe this would only help with the fatigue part. Again, I really am not here to give medical advice and act as though I know everything about this because I dont - but I honestly have been following this thread and just wanted to share my experience out of goodness - again, this only applies to what I was told to have 'borderline' chronic fatigue syndrome.

Basically I was at my absolute lowest 6 months ago and couldnt move or keep my eyes open, the fatigue felt like it was killing me and anything I did put me in bed for days/weeks if I pushed myself. Exercise was out of the question. I believe I tried everything possible in terms of vitamins, diet and rest etc, but by this point i was so desperate for anything just to get me to somewhat function, even if it was a little. My doctor decided to prescribe me stimulant medication - dexamphetamine. I was very hesitant, but again, i was desperate for absolutely anything to get a somewhat normal life back.There are various stimulant medications available purely for the problem of fatigue, and the whole point of them is to alert you during the day and at the right dose, by night time the person is able and ready to sleep. Honestly, this medication has absolutely saved my life. I am very aware that people would be apprehensive to this, but I felt as though there was no other way out. Although I am not 100% and still have bad days where the fatigue out of no where hits me, my good days are in the lead and I am so thankful that I am better functioning and the fatigue does not overbear me as i feel pretty close to normal. I know some people would be afraid of the addictive quality (like i was), and for this purpose I do not take it everyday and keep at a low dose. You can also get other medications that do not have addictive qualities that provide the same purpose. Becuase of the medication, I have SLOWLY been able to build up my exercise over a course of months, which has also enabled me to feel better and stronger. Now, I am fully aware this would not work for everyone but I chose to do this and post this for the sake of sharing to others what provided me with relief that I have so desperately needed. Honestly I dont know if I will be on this medication for life, but for now I am so much more able to function.

I really just feel for others going through this and truly hope everyone gets better - I finally feel as though I am taking the lead with this thing and at this point, whatever it takes to feel better I am willing to do it.

0 likes, 8 replies

8 Replies

  • Patrickgeoffrey
    Patrickgeoffrey reena56292

    Posted

    My problems started at 17,rest is the only thing that works for and just taking it easy, I am 58 now, I have had 3 relapses in the last 15 years, I always get better my longest relapse was 6 years,2001 to 2007, sometimes people just get better so you can never be sure if a medication works or you just got better,hopefully it will work if you have a relapse,CFS is such a complicated disease,there has been some amazing research this year especially the cells going into a protective hibernation state,maybe the medication woke them up for you,there is also the research that indicates that people with CFS have low blood volume,sometimes as low as 80℅ and a blood transfusion can receive the symptoms.BTW I do get the flu symptoms and my relapses are always triggered by the flu
    • reena56292
      reena56292 Patrickgeoffrey

      Posted

      How exciting that there has been new research I am so glad to hear. I really hope that in the near futue this becomes more acknowledged and properly treated as I really feel for those of us suffering. good luck to you and your recovery
  • kellyzboyz
    kellyzboyz reena56292

    Posted

    Thanks for sharing your story reena! I was diagnosed with CFS and Fibromyalgia about ten years ago. It has been an extremely rough ten years. Awful depression and frustration of not being able to do the things that needed to be done. Also, when people see you on a good day, they assume you're making everything up. On many occasions I would need to cancel my plans, which led to friends and family being down right mean! I'm currently taking Ritalin to be able to function and knock on wood it is working, however, like so many other meds I have tried, they seem to work for a short period of time and then just stop working. I'm so scared for that day to come! I got a taste of what life is like without the CFS and I don't want to go back to being unable to function! I was recently diagnosed with Dysautonomia, a disorder of the autonomic nervous system. It would be really nice if friends and family wouldn't give me a hard time when I'm unable to commit to plans we made. Living with this condition is hard enough!!! I hope things continue to go well for you and to those still unable to function, I hope there will soon be a way to treat this condition! Good luck everyone, wishing you all much happiness!!!

    • reena56292
      reena56292 kellyzboyz

      Posted

      I empathise with you massively, I remember when it was my absolute worst of days no one truly understood how i was feeling and of course you are going to get down and depressed like I was because you cannot do anything!! just horrible. I know what youre saying about meds stop working, my medication isnt as powerful as it was initially but if i need to increase the dose then so be it, honestly I dont want to go back to how things were either! Plus when i feel that way I just remind myself that this may not be forever and i could probably one day be off them, but for now this is what I have to do and its ok. I hope you are travelling on okay and what I know has helped me is to do things that make me feel good when I have the energy to do so and remember that things were so much worse and I overcame it. Best wishes to you x
  • dawn94288
    dawn94288 reena56292

    Posted

    Thank you so much for sharing your story.  I really want to be aware of the options.  We do tend to get to a point of desperation.
  • nannettesea
    nannettesea reena56292

    Posted

    Hi, reena56292, thanks for sharing your experience.  I have an amazing psychiatrist who is creative and has treated many with chronic illness, and she prescribed Dex in small doses.  My new CFS practitioner who also has CFS takes it as well.  It does help, though I "crash" when it wears off.  It doesn't help my recovery from overexerting, which is what I tend to do on it because of the energy/mood boost.  I take it every other day because of my energy cycles.  But I'm a lot longer into this illness--27 years or so, with the last 11 disabling.  I'm thrilled that it's helped you to the degree it has and that you have some degree of normalcy.  

    • reena56292
      reena56292 nannettesea

      Posted

      Hi, thats good to hear youre recieving help from a qualified doctor! I know what you means about the Dex 'crashes', i get them too. Thats why I often take mine in the mid afternoon so by nighttime if I do happen to crash I am actually tired and ready to go to sleep. I guess for me its better than the overbearing everyday fatigue that I did have which was an absolute nightmare!!! Sorry to hear you have been going through this longer than me, i really hope you find ways to recover and feel better x

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