• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Search results

  1. Lucinda

    Intense internal agitation

    I’ve looked it up. It is possible. But the only med that could possibly cause it is the one I have been using to treat it (clonazepam)
  2. Lucinda

    Intense internal agitation

    Can anyone help me identify this symptom I am suffering? I cannot sleep because an old symptom has returned. It is a strange symptom that is hard for me to describe but I will try: I am experiencing intense internal agitation/restlessness. The feeling is most centred in my chest and is...
  3. Lucinda

    Insomnia caused by intense internal agitation

    I have my doubts this is caused by clonazepam since I first got this symptom years before being put on the drug. I took the drug to ease the symptom. Additionally, I have experienced benzo withdrawal before. One time when I was reducing my clonazepam I got mixed up and under dosed for 2 weeks...
  4. Lucinda

    Insomnia caused by intense internal agitation

    And no I didn’t know this was a risk. I was prescribed it years ago by Dr Myhill who had been happy for me to keep taking it and frequently encouraged me to take more. However I didn’t take more after 3mg even though she told me to as she said good sleep is essential. Since she stopped being...
  5. Lucinda

    Insomnia caused by intense internal agitation

    So what would you suggest?
  6. Lucinda

    Insomnia caused by intense internal agitation

    Hi I have a very specific symptom where I experience an intense internal agitation/restlessness in my chest. I started getting it when I first developed ME 18 years ago. It was severe and I barely slept for years. I used to have to exercise to get rid of it so I would exercise then crash...
  7. Lucinda

    Five ways to reduce your ME/CFS "wired but tired" hyperaroused brain state

    Thanks for the heads up about Hyperbaric Oxygen Therapy. I've long known that anything stimulating makes me so much worse, so it is good to know that that is a stimulating therapy. I feel like my nervous system is always overstimulated. I actually have constantly blown pupils which shows how out...
  8. Lucinda

    Five ways to reduce your ME/CFS "wired but tired" hyperaroused brain state

    I'm on day 2 of trying NAG. I plan to then bring in turmeric and then flaxseed oil. I'll try and remember to feed back as to whether I find these helpful! x
  9. Lucinda

    Five ways to reduce your ME/CFS "wired but tired" hyperaroused brain state

    Gosh I used to think it was just me that experienced this. I used to have this to an extreme. It felt like torture. Anyhow after years of trying everything I could think of, I was put on clonazepam and it helped me so much. I then put into place other lifestyle changes (Dr Myhill's protocol)...
  10. Lucinda

    Non-cyclical breast pain/soreness

    I don't know. I seem to remember my doctor saying something about my breasts - it may have been that they were 'fibrous' - my memory isn't great but I think that is most likely the thing she said. I don't remember the word dense being used though. By the way I originally wrote in my post that...
  11. Lucinda

    Non-cyclical breast pain/soreness

    Are there other signs that a person could have inflammation issues? I have loads of symptoms that could be caused by anything so it's hard to narrow down causes (I suppose this is true of everyone here!). And what foods encourage inflammation? I'm currently trying to follow Dr Myhill's Stone...
  12. Lucinda

    Non-cyclical breast pain/soreness

    I'm too young to be peri/menopausal. I'm 27 and have regular and pretty normal periods. Some of my ME symptoms get worse before my period (esp headaches, weakness, and the 'wired but tired' feeling), alongside normal PMS stuff, but as far as I know that is common amongst ME sufferers. Though I...
  13. Lucinda

    Non-cyclical breast pain/soreness

    Thanks for the replies. Ema - why would I be estrogen dominant? How would I know if I was and what could I do about it? I don't really know much about hormones to be honest.
  14. Lucinda

    Non-cyclical breast pain/soreness

    I have had non-cyclical breast pain/soreness for about 2 years now (I have had ME for about 9 yrs btw). It started a few months after I stopped having Perrin treatments. Before and during Perrin treatments I had not experienced breast pain/soreness. I am therefore wandering if it is connected...
  15. Lucinda

    In Memory of Rich Van Konynenburg.

    I am so sorry to hear this. He was such a generous, kind, person, who spent so much of his time helping others. Such a great loss for us all. And thoughts especially with you, Diana, and the rest of his family. xx
  16. Lucinda

    Can clonazepam (Klonopin) cause depression?

    I'll look into it but am not sure if I'd be well enough if it required much travelling or well, energy. I've heard my mum say my old uni does them, but that's an hours drive away which is too much. My thyroid? Don't know much about thyroid issues either and how they are relevant! However, I...
  17. Lucinda

    Can clonazepam (Klonopin) cause depression?

    Thanks. I just read the page on DSPD and it does fit. However, from my understanding it is common for those with ME to have a delayed sleep pattern. Dr Myhill assumes it is a delayed sleep pattern which she thinks can be fixed her way. It's hard for me to tell which I have. It's true that I do...
  18. Lucinda

    Can clonazepam (Klonopin) cause depression?

    Thanks for the replies. I don't know if I have delayed sleep phase syndrome. I have never had my sleep problems investigated. I have complained about them a lot, and yet NHS doctors did nothing of any use, so I had to rely on Dr Myhill (my private doctor). She just seems to treat my delayed...
  19. Lucinda

    Can clonazepam (Klonopin) cause depression?

    Hi I know there are lots of threads on here discussing clonazepam (which I understand is called Klonopin outside the UK) but I'm too brain fogged to go through all the endless threads. So I'm hoping someone can help me here. I have been taking clonazepam since February last year. So 19...
  20. Lucinda

    Spiritual quotes/poems/etc for the fatigued.

    Often, when I am just plain exhausted, and don't have the energy to think much, I like to find comfort in inspirational quotes/poems/etc. So I wanted to start up a thread, where people can share their own favourite quotes/poems/etc, that give them strength when they most need it. I have...
  21. Lucinda

    Lead toxicity and DMSA

    Thanks for all of the replies. I talked to Dr Myhill and she suggested that I tried reducing my dosage to 250mg. Then, if that still makes me ill, then to e-mail her and she will think of another way of getting lead out of my system, and take me off the DMSA. She said it wouldn't be the DMSA...
  22. Lucinda

    Lead toxicity and DMSA

    Adster - It's more that I'm worried how I'd do the Cutler protocol. If she won't support me on it, or hasn't heard of it, I'd have to go it alone. I'd then have to do all this research and stuff and don't feel I can do that. I want a doctor to support and help me. However she might allow me to...
  23. Lucinda

    Lead toxicity and DMSA

    Well I did the one she sent me. I had to take a DMSA tablet first thing in the morning, then do a urine collection for the next 8 hrs. I don't really understand the lab ranges, the results were confusing, but she said that the lead was way too high. She also said Cadmium and Thallium were a...
  24. Lucinda

    Lead toxicity and DMSA

    Thanks Justy. It's frustrating as as you know, up until taking the DMSA I had been improving a great deal following her protocol. I was happy I had found a doctor who understood what was wrong and knew what to do about it. I'm so confused now though. After all my improvement, I've gone...
  25. Lucinda

    Lead toxicity and DMSA

    Thanks for all your comments. Oh and I don't take it every 24 hrs by the way. I am supposed to take three 250mg DMSA tablets, on one day of the week, every week, for three months. So I take it once a week. I'll read up on the Cutler protocol when I have the energy. This is the problem...
  26. Lucinda

    Lead toxicity and DMSA

    I'm currently a patient of Dr Myhill's, and after having my initial consultation with her she suggested many different tests that would be relevant for me, one of which was a heavy metals test. Following the test, I received the results that I had abnormally high levels of lead in my body...
  27. Lucinda

    One Last Goodbye: Sometimes Only a Mother's Love Can Help End the Pain

    Finished reading this book today. Was heart breaking :(
  28. Lucinda

    M.A.D in May: the 12 Days of May ME/CFS Advocacy Project: Day #1 - FACEBOOK DAY!

    Yes. British people do sometimes say they are 'mad' for someone, meaning they really fancy them.
  29. Lucinda

    Dr Myhill wins back her licence to practise

    I contacted the office, and found out Dr M is now allowed to prescribe B12 and magnesium injections. Good news!
  30. Lucinda

    acupuncture

    Yes I've had very positive results. I did a post about it on this acupuncture thread: http://forums.phoenixrising.me/showthread.php?9793-Has-acupuncture-helped/page2&highlight=acupuncture