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please help with CFS

Posted , 6 users are following.

andrew808
andrew808

im pretty sure i have cfs and i need help please, to cut a long story short i have cushings disease which has led me to have one of my adrenal glands removed, my cortisol levels are ok now but what concerns me is that is it possible to recover from cfs with only one adrenal gland ? i hear so much about how adrenal burn out is a huge thing in recovery so im worried that it will hold me back forever, thanks for all our help

1 like, 14 replies

14 Replies

  • Fidd
    Fidd andrew808

    Posted

    I don't think anyone knows why it is that some people recovery and some do not. Recovery rates are not great anyway, but if you've not been ill for long, some people do just go through a period of CFS symptoms. Hopefully things will improve for you.
  • jackie00198
    jackie00198 andrew808

    Posted

    Andrew:

    First of all, why do you think you have CFS? What are your symptoms? Second, there's no reason to believe that if you do have CFS, you couldn't recover with one adrenal gland. I understand that all of this can be overwhelming, but you're kinda jumping from one worry to the next. The idea that something can hold you back forever is an extremely negative thought that puts you in a no-win frame of mind. Stress and worry are two emotions you want to minimize with any illness--especially with ME/CFS. In fact, I think these emotions are far worse that the loss of an adrenal gland. (This is just my personal belief.) Try to control what you can, including nutrition and rest. And try to minimize stress in whatever way you can, be it through meditation, yoga, listening to music, deep breathing, or anything else.

    • andrew808
      andrew808 jackie00198

      Posted

      thanks jackie 

      my symptoms are almost everything on the checklist ,constant fatigue ,loss of concentration, memory loss, muscle tightness, pain, headaches ,cold extremities, its been coming for about two years now but i have just tried to ignore it but i have officially given in and now realize what i have 

    • Shreddie
      Shreddie andrew808

      Posted

      Hi Andrew, when was the adrenal gland removed?  And how long since your cortisol levels were stabilised?
    • andrew808
      andrew808 Shreddie

      Posted

      adrenal gland was removed two and a half years ago but thinking back my cfs symptoms started before that i think cortisol has been stable for about a year now
    • georgeGG
      georgeGG andrew808

      Posted

      Acceptance that have ME/CFS is the first step to a cure. I understand it is universal that over exertion is counterproductive and agrevates the condition. It certainly was in my case. I have been back to 'normal' for many years now but If I over exert myself I can be exhausted for two or three days afterwards. So I still have to be careful.
    • Zippyevo1
      Zippyevo1 georgeGG

      Posted

      Hi George

      Can I ask how long you suffered for and how you conquered the worst of it? I think the problem on a lot of forums is that we do not see enough success stories to help motivate those of us who are still stuck in the foggy despair of it all to know that n=one day we will get better!

      cheers

    • georgeGG
      georgeGG Zippyevo1

      Posted

      Hi Zippyevo,

      Gladly. It started with moving into an old house which had DIY anti wood rot treatment. The lender required that I do it again to get a cerificate. We did not realise the significance until much later but we were down wind of a very big petrochemical complex with special flaring every Friday evening. We were also down wind of a chemical reprocessing plant that became notorious for bad practices and was eventually closed. 

      I soon became chronically fatigued and diagnosed with a 'Space Age Virus' I took that as a 'I don't know'. Referred to a lung clinic I was diagnosed with Sarcoidosis and treated with high dose of steroids. From the first pill it was a disaster. I continued chronically fatigued with brain fog, memory problems.. This treatment continued for ten years. Other pills were added but none did any good. The disasterous side effects gradually worsened. By a miricle I managed to decide, yes that was the miricle. The smallest decision could take days. I decided to stop all the pills. I had no ill effects from that. Very slowly I started to improve. We decided about the same time to move house. This took me away from the polution. My wife then took advice from a dietitian.I started on filtered water, boiled brown rice and pears. Additional foods were added. Those that disagreed with me were 'banned'. The others were added to my diet. It took ten to fifteen years to gain a reasonable amount of stamina to do an office job. My brain fog cleared more quickly, in about two years. 

      I found I had to avoid petro chemicals including cosmetics, smoked food.I also had to avoid exertion. Modest exercise was Ok but if I pushed myself I set myself back. It really took a lot of patience and perseverence.

      My memories of those years are few and sketchy.

    • Shreddie
      Shreddie andrew808

      Posted

      you have really been in the wars.  Adrenal problems and thyroid problems often go hand in hand, and both are common in people diagnosed with CFS.  I do suffer from adrenal fatigue and have had cortisol.  I particularly suffer when severely stressed or traumatised.  For example, when my brother died suddenly I was very ill.  I wish someone could link all these things together to find a cure for us.  I do hope you feel better.
    • jackie00198
      jackie00198 Shreddie

      Posted

      Shreddie:

      I think we have a common experience here. My brother also died suddenly, which was extremely traumatic for me. I think the trauma and the grief were too much for my system, and may have started me down the road to ME/CFS.

    • Zippyevo1
      Zippyevo1 georgeGG

      Posted

      Thanks for that

      I am coming up to 4 years next month and I am finally being referred to the infectious diseases clinic after begging and begging with my GP to do something. I must have had exery test going and they have all come back clear which I know is good but very frustrating at the same time.

      I am a lot better than I was to start with but still have constant brain fog and feeling drunk and hungover 24-7 which is the most dibilitating things and sometimes I cannot see straight and wobble all over the place. They have said all along viral labrynthitis and now they are saying it is migraines. I am to start a treatment for migraines which I did try taking the other night but I was wiped out after taking it the next morning and my symptoms seemed a lot worse. I ham lucky as I dont get the cripling muscle body pain only in my shoulders and neck and I am back running and am dertermined to get strong physically and mentally in order to not let this thing whatever it may be get on top of me.

      I do think it ispost viral or adrenal fatigue as the slightest things send me into a spiral of anxiety and nerves where my body starts shaking violently and I feel like I am gonna pass out. i am unable to drink alcohol as at the time I feel fine but it can make me violently vomit for 48 hours and my symptoms worsen for about 2 weeks afterwards. I do miss a glass of wine but that is not important to me I just want to get better.

      Can I ask why you chose pear as your diet to start with? I do a 6-8 week detox and strip everything out of my diet I can and although I do feel better I still feel constantly groggy and spaced out all the time.

      My doctor refused to send me for alergy tests and refused to assign me to a nutritionist either - he does not beleive in post viral fatigue.

      I am glad you are feeling better now and I hope all of us on here will soon be back on track soon. I am determined to get on top pf this in the end!

      thanks

      Zippy

    • georgeGG
      georgeGG Zippyevo1

      Posted

      Hi Zippy

      One day that doctor will get post viral fatigue and the he will know. He will also become a better doctor.

      Pears and brown rice are the least likely foods to cause a reaction in anyone, we were told.

      George

    • jackie00198
      jackie00198 Zippyevo1

      Posted

      Zippy:

      Sorry you're having all these problems. One thing mystifies me--what can it hurt for your doctor to assign you to a nutritionist and send you for allergy tests? Is he on a mission to save the NHS money, or is he being stubborn and arrogant about his not believing in this illness. Good thing you'll be seeing someone else.

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