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I am glad to have found this forum, as there aren't many places that one can talk about ME openly. This is my story, and where I am now.
I had always been a less than energetic kid, though this was attributed to the fact that I had a developmental disability (ASD). However, in my teenage years I would immediately go to sleep everyday after school, the exertion of being in school was too much for me. At age 17 I got a rough flu strain that was not common that year, and immediately was hit with another viral infection while recovering. I was never the same after this, as I was frequently branded as lazy, lacking in work ethic, etc rather than genuinely being tired and unable to manage. I am now 24, so I've spent 7 years in this hell.
I had never heard of ME/CFS as I was born and raised in a rural area where these things are simply unheard of. I was convinced I was lazy and mentally ill, because that's what other people told me. So I was forced to keep pushing, but the symptoms I experienced were truly bizarre. I had already started to develop chronic pain in my legs before the viral infection, but it became truly terrible after the fact if I was forced to stand or move around too much. I had a job that made me want to cry everyday from the pain and fatigue it caused because the employees were not allowed to sit at all. Eventually, a permanent feeling of heaviness and a weird sort of tingling/burning sat into my legs, and has now spread to my hands too. Brainfog had begun to appear and made it impossible to do anything.
When I finally got a blood test, it said I had a severe Vitamin D and Vitamin B12 deficiency. I thought I had finally found the cause of my fatigue, but I was wrong. Supplementation did not fix the issue, in fact I supplemented so much that my B12 levels went above the normal range, and it didn't do anything. The wild goose chase for improvements began, as I was desperate for relief and tired of the constant gaslighting.
Now it's important to mention that I also suffer from PTSD. I went through child abuse, including being violated by a doctor, had physically violent family members, was a victim of grooming, and have been in several emotionally abusive relationships which began after I fell ill. Because I've been through so much trauma, people use it as an excuse to say my condition is psychosomatic and therefore not real. What is truly sick is that people say I let my PTSD get in the way of seeking "proper treatment" but doctors are ultimately clueless about what is wrong with me and have treated me quite badly or with disbelief.
However, I have seen over 14 therapists in my lifetime and none of them have been beneficial in aiding my physical or mental health, no offense. Like many of you, I have been on a gamut of psychiatric drugs (my new GP actually made me take things I already tried before because they completely ran out of ideas) including every SSRI, every SNRI, trycylics, wellbutrin, multiple stimulants like modafinil, mirtazapine and a plethora of antihistamine drugs, propranolol, and others that I cannot recall off the top of my head. None helped me whatsoever and most of them made my fatigue worse. I have also tried psychadelics including mushrooms, LSD, and 2CB which also did not help any of my conditions.
I have kept trying to push through for many years, only to find that my baseline has decreased. Several years ago I developed spinal pain as well, and imaging a couple years ago discovered that I have a tear between discs and at least one area of my spine now has moderate levels of disc degeneration. On top of this I developed a permanent sciatica that radiates down my leg and toe. It is a constant battle between fatigue and pain, since my pain is not properly managed. The only thing that relieves my pain are opiates, which doctors won't prescribe, not to mention that they make my brainfog even worse. I've tried just about every NSAID, TENs machines, light physiotherapy, heat and cold patches, etc but they made no difference in CFS symptoms or the pain.
NHS staff seem to think I am merely deconditioned and not trying to improve myself (GP agreed I have CFS yet wouldn't refer me to the service) but I did an experiment where I tried to see how long I could cycle if I went on it daily. With each passing day, the amount I could do it before I hit my limit decreased. Over the years, the amount of time I can spend outside without getting that awful sore throat, feverish flu like feeling, which I later came to identify as PEM, has decreased. I have no family to care for me and am ineligible for benefits due to my immigration status, so I live in fear for my future and ability to survive since I currently would not be able to hold a full time job.
Last year threw me for a loop, as the constipation I've had for many years suddenly got worse. It took months of suffering and humiliating treatments I had to give myself and endure, before I was allowed to have a MRI scan which showed that I was eaten up with large tumors and ovarian cysts. Blood tests came back clear for no ovarian cancer, but I had to have a long surgery to remove the massive tumors and the cysts. Fluid had leaked into abdomen and caused scar tissue everywhere, which had to be cut out. Biopsy also said that it was not cancer, yet there was some lingering inflammation in my blood. After I had this surgery, many people told me this was going to solve so many of my problems, and perhaps I had never had ME all along, but simply was effected by the tumors. While my constipation became less frequent, it really did not improve anything for me. I was on a course of antibiotics for several weeks to prevent any infections, also no improvement. In fact, it got worse.
My brainfog, memory issues slurred vision, concentration, poor circulation, and language abilities went straight into the toilet after this operation. I had been doing a mostly remote university degree because I couldnt handle anything else, and I almost did not finish my course because my ability to write anything coherent or form any ideas was gone. I took an IQ test and it showed my IQ had dropped 30 points since I last had it measured in high school. All the while, I have been invalidated constantly by others who claim I act stupid on purpose and if I was really this impaired, I would not be able to write posts on the internet at all.
During the surgery recovery, I tried using cannabis once to help with the pain and it only made me worse, even more sluggish and slow. My ability to communicate with others and feel many emotions seems to be completely blunted, like anhedonia, but it's a completely unique feeling, like your brain being too empty to compute anything. I tried to force myself out of the house to do things I had always wanted to do, yet found myself miserable because as usual I was dragging my legs, needing to sit down, and so out of it and tired I couldn't function. I have fallen asleep in public several times and will often nearly fall asleep even if I'm sitting up, though I spend the majority of my life in bed on the computer.
I've been trying supplement after supplement, including NAC, coq10, and many different vitamin cocktails. Soon I am going to be starting 0.5 mg LDN and titrating up, as this drug seems to have the most promising results out of things I haven't tried, but I have a feeling after the decline I experienced since surgery I'm stuck in this zombie state. Much love to all my fellow sufferers.
I had always been a less than energetic kid, though this was attributed to the fact that I had a developmental disability (ASD). However, in my teenage years I would immediately go to sleep everyday after school, the exertion of being in school was too much for me. At age 17 I got a rough flu strain that was not common that year, and immediately was hit with another viral infection while recovering. I was never the same after this, as I was frequently branded as lazy, lacking in work ethic, etc rather than genuinely being tired and unable to manage. I am now 24, so I've spent 7 years in this hell.
I had never heard of ME/CFS as I was born and raised in a rural area where these things are simply unheard of. I was convinced I was lazy and mentally ill, because that's what other people told me. So I was forced to keep pushing, but the symptoms I experienced were truly bizarre. I had already started to develop chronic pain in my legs before the viral infection, but it became truly terrible after the fact if I was forced to stand or move around too much. I had a job that made me want to cry everyday from the pain and fatigue it caused because the employees were not allowed to sit at all. Eventually, a permanent feeling of heaviness and a weird sort of tingling/burning sat into my legs, and has now spread to my hands too. Brainfog had begun to appear and made it impossible to do anything.
When I finally got a blood test, it said I had a severe Vitamin D and Vitamin B12 deficiency. I thought I had finally found the cause of my fatigue, but I was wrong. Supplementation did not fix the issue, in fact I supplemented so much that my B12 levels went above the normal range, and it didn't do anything. The wild goose chase for improvements began, as I was desperate for relief and tired of the constant gaslighting.
Now it's important to mention that I also suffer from PTSD. I went through child abuse, including being violated by a doctor, had physically violent family members, was a victim of grooming, and have been in several emotionally abusive relationships which began after I fell ill. Because I've been through so much trauma, people use it as an excuse to say my condition is psychosomatic and therefore not real. What is truly sick is that people say I let my PTSD get in the way of seeking "proper treatment" but doctors are ultimately clueless about what is wrong with me and have treated me quite badly or with disbelief.
However, I have seen over 14 therapists in my lifetime and none of them have been beneficial in aiding my physical or mental health, no offense. Like many of you, I have been on a gamut of psychiatric drugs (my new GP actually made me take things I already tried before because they completely ran out of ideas) including every SSRI, every SNRI, trycylics, wellbutrin, multiple stimulants like modafinil, mirtazapine and a plethora of antihistamine drugs, propranolol, and others that I cannot recall off the top of my head. None helped me whatsoever and most of them made my fatigue worse. I have also tried psychadelics including mushrooms, LSD, and 2CB which also did not help any of my conditions.
I have kept trying to push through for many years, only to find that my baseline has decreased. Several years ago I developed spinal pain as well, and imaging a couple years ago discovered that I have a tear between discs and at least one area of my spine now has moderate levels of disc degeneration. On top of this I developed a permanent sciatica that radiates down my leg and toe. It is a constant battle between fatigue and pain, since my pain is not properly managed. The only thing that relieves my pain are opiates, which doctors won't prescribe, not to mention that they make my brainfog even worse. I've tried just about every NSAID, TENs machines, light physiotherapy, heat and cold patches, etc but they made no difference in CFS symptoms or the pain.
NHS staff seem to think I am merely deconditioned and not trying to improve myself (GP agreed I have CFS yet wouldn't refer me to the service) but I did an experiment where I tried to see how long I could cycle if I went on it daily. With each passing day, the amount I could do it before I hit my limit decreased. Over the years, the amount of time I can spend outside without getting that awful sore throat, feverish flu like feeling, which I later came to identify as PEM, has decreased. I have no family to care for me and am ineligible for benefits due to my immigration status, so I live in fear for my future and ability to survive since I currently would not be able to hold a full time job.
Last year threw me for a loop, as the constipation I've had for many years suddenly got worse. It took months of suffering and humiliating treatments I had to give myself and endure, before I was allowed to have a MRI scan which showed that I was eaten up with large tumors and ovarian cysts. Blood tests came back clear for no ovarian cancer, but I had to have a long surgery to remove the massive tumors and the cysts. Fluid had leaked into abdomen and caused scar tissue everywhere, which had to be cut out. Biopsy also said that it was not cancer, yet there was some lingering inflammation in my blood. After I had this surgery, many people told me this was going to solve so many of my problems, and perhaps I had never had ME all along, but simply was effected by the tumors. While my constipation became less frequent, it really did not improve anything for me. I was on a course of antibiotics for several weeks to prevent any infections, also no improvement. In fact, it got worse.
My brainfog, memory issues slurred vision, concentration, poor circulation, and language abilities went straight into the toilet after this operation. I had been doing a mostly remote university degree because I couldnt handle anything else, and I almost did not finish my course because my ability to write anything coherent or form any ideas was gone. I took an IQ test and it showed my IQ had dropped 30 points since I last had it measured in high school. All the while, I have been invalidated constantly by others who claim I act stupid on purpose and if I was really this impaired, I would not be able to write posts on the internet at all.
During the surgery recovery, I tried using cannabis once to help with the pain and it only made me worse, even more sluggish and slow. My ability to communicate with others and feel many emotions seems to be completely blunted, like anhedonia, but it's a completely unique feeling, like your brain being too empty to compute anything. I tried to force myself out of the house to do things I had always wanted to do, yet found myself miserable because as usual I was dragging my legs, needing to sit down, and so out of it and tired I couldn't function. I have fallen asleep in public several times and will often nearly fall asleep even if I'm sitting up, though I spend the majority of my life in bed on the computer.
I've been trying supplement after supplement, including NAC, coq10, and many different vitamin cocktails. Soon I am going to be starting 0.5 mg LDN and titrating up, as this drug seems to have the most promising results out of things I haven't tried, but I have a feeling after the decline I experienced since surgery I'm stuck in this zombie state. Much love to all my fellow sufferers.