Sad day

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Just recently my dr told me I have cfs. I've been feeling like this most of life. I can't remember not being tired, and aching, etc. I think getting answers for why I feel the way I do has been more depressing to me than not knowing. I can't change this, I've tried different things nothing helps. I hate hate hate the brain fog and the aches and pains. I keep looking for that one thing to do to fix me but I keep coming to the same dead end. This morning when I read the side effects of the latest med I was prescribed I just cried. Man, today is a hard one for me. Sorry to be down I just needed to vent a bit.

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14 Replies

  • Posted

    As far as I'm concerned, we don't ever have to apologize for how we feel.  I'm sorry you're having a tough day. 

    We care, and we understand.  

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  • Posted

    We all vent sometimes!

    Try not to be too down-hearted because some people do recover. There are many ways to improved symptoms. Good diet, herbs and homeopathy are helping me immensely!. 

     

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    • Posted

      Not really but there's a homeopathic remedy I'm taking that makes me less dizzy and stronger when I'm standing up so I can do a bit more around the house.

      Some of my symptoms have improved over the years from the things I've been doing. I feel like I will get better and I have to believe it and hope. razz

      How are you progressing?

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  • Posted

    I know exactly how you feel, no need to apologise!

    I saw my doctor today, and after around 3 months of being diagnosed with CFS/ME, he handed me some literature on Fibromyalgia and said he believes this is an additional diagnosis to all my other problems. He also said he cannot refer me to a CFS/ME clinic as the clinic states in their guidelines that they will not accept patients who suffer from muscular pain, yet CFS/ME sort of goes hand in hand with Fibromyalgia. It just seems to be going from bad to worse. I would rant and rave about it but I just don't have the energy to do anything right now. I wish it would all go away.

    Take care and all the best for the future, even if it probably looks a bit bleak for you at the moment.

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    • Posted

      Hi Paul,

      Where o you live? I em in UK and was referred to cfs/me and had pain at the time. Thought it was just a case of having a blood test where everything comes back normal to get referred? I'd check it out to be 100%

      Beverley

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  • Posted

    Hi, I am so sorry you feel so bad and you never have to say you're sorry for needing to vent. I have been in your place sooooo many days. I don't have any miracle cures, but I can tell you that the one thing that helped me the most was food allergy testing. After eliminating foods I was allergic to, most of my brain fog, muscle pain, dizziness, stomach troubles and I BS went away. Also, that really horrible, devastating fatigue got better to where I could get dressed most days and actually do a couple of chores. If you have a dairy allergy, as I did, you have to be careful of medications that use Lactose as a filler. Additionally, if you haven't already done so, have your doctor check for vitamin d and b12 deficiencies. That was another big thing for me. And because of my age, I needed b12 injections instead of the oral vitamin. After the age of 50 our stomachs stop absorbing b12 taken orally, or if you have stomach problems too. I hope you can use some of this information, and please know that you are not alone. On hard days just try and rest more and take care of you. Best wishes, Diana 🙂

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    • Posted

      You can buy vitamin sprays for under the tongue. They're supposedly absorbed more easily and faster into the blood stream than tablets and obviously bypass the digestive system.

      Not all doctors offer injections of vitamins; mine doesn't.

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    • Posted

      Good morning. I was getting a B-12 shot every week but last month my dr said that he only wants me to get out monthly now so I've been taking a liquid B-12 that I put under my tongue. It's ok.

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    • Posted

      Hi Georgia, I have tried the sprays and the liquid under the tongue, but they cause me to have bad headaches. 😔 My doctor writes a script for cyanocobalamin (injectable B12) and I administer the injections at home. They have helped some, but if I don't continue them on a weekly basis my levels drop pretty rapidly. Thanks for your suggestion...it's a good one, just not for me. ?

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    • Posted

      It's not for me either Diana! I ordered one and it tasted of harsh chemicals so I'm sending it back. And it made me feel awful, I have MCS (multiple chemical sensitivities. Some of the ingredients are things I wouldn't eat in food.

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  • Posted

    Thank you all so much. I really do have a wonderful understanding and helpful family. I just don't want to put my negativity on them always. Monday I will begin to look for another Dr.

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  • Posted

    So sorry you've gotten this diagnosis. I know it's hard to live with. You can get better, though. Especially since you've been recently diagnosed. Get plenty of rest and pace yourself. Don't try to push through the fatigue, as that can make symptoms worse and possible reduce your chance for a recovery. De-stress in whatever way you can, as stress exacerbates the symptoms. People can get better, even if they're not on any special meds or treatment.

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  • Posted

    The only thing that works for me is rest,my problems started at 17 I am 58 now, I have had 3 relapse in the last 15 years all triggered by the flu,so I would say just rest and don't push your self, I am so use to it I dont worry about it. I just rest as much as possible when things are bad, I am struggling to walk 100 meters now

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