Hello, I'm new here and just wanted to introduce myself and write a bit of my story. I'm very glad I found this place with such a wealth of information. I've been reading for a couple of months now and am finding it very helpful if not quite overwhelming. I am somebody who has been diagnosed with ME/CFS (Canadian criteria) and who also suffers from Anxiety Disorders and Agoraphobia but this is not the cause of my illness. I had two very sudden onsets that started this up for me despite the fact that I believe I was born with this disease and it was passed on to me by my mum. The first event that kicked it off was after I came off a medication when I was 17 and the second and most significant was last year when I took two herbal remedies for my immune system at a time of high stress. I have been very sick ever since then. It happened within a day and I thought that maybe I'd had a stroke because the whole of the ride side of my body became hyper sensitive, painful and developed a constant internal pulsing movement. I could barely sit down for about 2 weeks. I've also been diagnosed with Fibromyalgia and Multiple Chemical Sensitivity.
My symptoms are very wide ranging with neurological problems, extreme weakness, pain and exhaustion being the most distressing. I can remember as far back as when I was around 10 feeling very weak and having problems standing for long periods as well as even younger having some odd neuro symptoms. They didn't bother me too much at the time. I'm pretty sure I have POTS and have done for many years but have never had a doctor take me seriously on that one so no diagnosis. I also have so many food intolerances I am down to eating meat and vegetables and nothing else.
Lately I am starting to worry that my neurological symptoms are becoming so overwhelming that I may have MS and not ME/CFS. They never gave me the tests for MS even though I wanted them, in fact it was never even mentioned which I thought was odd because the first things that came to mind for me were Parkinsons disease, MS and CFS. My neuro symptoms can be so severe they leave me unable to do even simple things, for example I can rarely comb my hair anymore because every time something pulls on or gets blood to my scalp it sets off the nerves and muscle contractions in the right side of my body which are very uncomfortable and sometimes painful, I also get instantly dizzy and my feet burn. I'm sure you can imagine how crazy that sounds when trying to explain it to others. My neuro symptoms sometimes reduce in severity but never go away completely. I have a constant pulsing sensation that runs down my spine, into my right side and into the muscles in my legs where I feel that they are contracting and relaxing constantly. I know my immune system is implicated also because of my MCS which leaves me unable to go near anything that even smells strongly without having an immune reaction and getting sick. I now have problems going in the car because my balance is messed up and I get awful motion sickness and a severe increase in neuro symptoms. I have spent a lot of time this year in bed or lying on the couch too sick to move. I get lots of headaches, burning skin, nerve issues, perception and distance issues, tingling, freezing hands and feet, sensitivity to sound and light, a feeling as if I have rubber bands tied around my wrists and ankles, lots of pain in my limbs and at the base of my skull. I also get a strange symptom where I will suddenly have a huge surge of adrenaline (unrelated to anxiety) that comes on randomly and can last for days and sometimes weeks then it goes away just as randomly. I could go on forever with all my symptoms but I am going on a bit arent I? I know a lot of you have had to deal with similar and worse and I do feel fortunate that I am not always bed bound and can do small things. All of my blood tests came back normal except for having Gilberts syndrome and slightly low iron.
Oh and one more thing...I'm absolutely terrified of doctors due to so many bad experiences and it was a huge ordeal just getting my initial diagnoses. I'm now possibly going to be going to a neurologist and I assume I will be told I am just a nutcase who has created my own symptoms because I have an anxiety disorder. If anyone could help me out and has any similar neuro problems Id really like to hear or anybody who feels their ME/CFS is similar to MS.
Thanks very much for reading my story. I really do appreciate it as there is no one who really understands what living like this is like.
Amy
My symptoms are very wide ranging with neurological problems, extreme weakness, pain and exhaustion being the most distressing. I can remember as far back as when I was around 10 feeling very weak and having problems standing for long periods as well as even younger having some odd neuro symptoms. They didn't bother me too much at the time. I'm pretty sure I have POTS and have done for many years but have never had a doctor take me seriously on that one so no diagnosis. I also have so many food intolerances I am down to eating meat and vegetables and nothing else.
Lately I am starting to worry that my neurological symptoms are becoming so overwhelming that I may have MS and not ME/CFS. They never gave me the tests for MS even though I wanted them, in fact it was never even mentioned which I thought was odd because the first things that came to mind for me were Parkinsons disease, MS and CFS. My neuro symptoms can be so severe they leave me unable to do even simple things, for example I can rarely comb my hair anymore because every time something pulls on or gets blood to my scalp it sets off the nerves and muscle contractions in the right side of my body which are very uncomfortable and sometimes painful, I also get instantly dizzy and my feet burn. I'm sure you can imagine how crazy that sounds when trying to explain it to others. My neuro symptoms sometimes reduce in severity but never go away completely. I have a constant pulsing sensation that runs down my spine, into my right side and into the muscles in my legs where I feel that they are contracting and relaxing constantly. I know my immune system is implicated also because of my MCS which leaves me unable to go near anything that even smells strongly without having an immune reaction and getting sick. I now have problems going in the car because my balance is messed up and I get awful motion sickness and a severe increase in neuro symptoms. I have spent a lot of time this year in bed or lying on the couch too sick to move. I get lots of headaches, burning skin, nerve issues, perception and distance issues, tingling, freezing hands and feet, sensitivity to sound and light, a feeling as if I have rubber bands tied around my wrists and ankles, lots of pain in my limbs and at the base of my skull. I also get a strange symptom where I will suddenly have a huge surge of adrenaline (unrelated to anxiety) that comes on randomly and can last for days and sometimes weeks then it goes away just as randomly. I could go on forever with all my symptoms but I am going on a bit arent I? I know a lot of you have had to deal with similar and worse and I do feel fortunate that I am not always bed bound and can do small things. All of my blood tests came back normal except for having Gilberts syndrome and slightly low iron.
Oh and one more thing...I'm absolutely terrified of doctors due to so many bad experiences and it was a huge ordeal just getting my initial diagnoses. I'm now possibly going to be going to a neurologist and I assume I will be told I am just a nutcase who has created my own symptoms because I have an anxiety disorder. If anyone could help me out and has any similar neuro problems Id really like to hear or anybody who feels their ME/CFS is similar to MS.
Thanks very much for reading my story. I really do appreciate it as there is no one who really understands what living like this is like.
Amy