Intro And Questions

[Annamarie]

Hi everyone.

I have been reading this forum for over a year.

Some background:

2003 got adult chicken pox, a week after it was over I ended up with severe vertigo, brain fog and memory problems and MS like symptoms. Within 3 months I went from 135 lbs to 230 and my breasts went from a 34 b/c to 44 dd and I got a belly for the first time in my life.

I deteriorated over the following yr until I was bedridden. PTSD got much, much worse. I was also increasingly dependent on an abusive relative who enjoyed the feeling of power he had over me as became more and more helpless. Basically unrelenting stress and zero sense of safety or support for over 4 years until I managed to get away.

I was diagnosed with CFS/ FM and then a year later Lyme

Over the years I have tried many things and have slowly improved but not %100 better.

After finding this forum I began with Preg and noticed a calming effect, improved energy and improved sleep and a reduction in the number of relapses and increased ability to handle stress. I added Progest-e next on its own and noticed feeling more relaxed but with out the preg I would get what I now believe are adrenaline rushes so I added back on the preg and together they are amazing.

I take 10 drops of Tyromix a day spread out, I have settled on this based on my symptoms and after experimenting with NDT and thinking I was getting more hypo due to too much t4.

Next I experimented with some cypro after reading about it on here. It has improved my ability to handle stress and also helped me out of my feelings of helplessness this is what helped me handle the stress of working. It also reduced my urge to drink alcohol and eliminated my suicidal ideation. It also helped me sleep through the night without waking for the first time in as long as I can remember, but I still have sleep onset insomnia.

Sorry for all the background taking so long. Now I would like some input into where to go next. I believe I have low dopamine as the Cypro has made me "dull" and unmotivated. I play a musical instrument and since I began Cypro I dont practice until I have to for a Jam or lesson and its really effected my progress, however when I stop Cypro I get anxiety and suicidal ideation again. I believe I have a lot of healing to do and I am on the right track with with these supplements.

I lower the cypro and Progest-e and preg sometimes to see if I can get off of them but right now I can't and I am fine with that because I think these are what my body needs to heal right now.lowering stress and giving it the hormones and supplements it needs but in the meantime I want to enjoy my music again.

I want to improve my motivation to enjoy playing music again and be self motivated again but without the anxiety and fear that I had before using cypro. I just can;t seem to get off of it at this moment.

Does anyone have any suggestions on where to turn next to increase motivation and enjoyment again?

@haidut

 

[Sobieski]

You need to get your diet, environment (which as you've said in the past has been far from positive) and metabolism in an optimal state on it's own first (which can take time), unless of course you have a legit medical condition which necessitates some form of supplement, no supplement is a panacea though. What's your diet like? Daily environment? Sleep?

 

[zewe]

Dear Annemarie,

I feel deeply for you. I too suffer from FM/CFS and PTSD. On top of that I have the genetic condition of Hisatmine Intolerence/Mast Cell Activation Syndrome.

It has been my theory that the HIT/MCAS is why I and some others never recover from PTSD. From my reading these conditions are being linked to FM and I would say CFS too; they seem to be 2 sides of the same coin.

I have recently read that MCAS is linked to PTSD.

Before my trauma, I would have bouts with what I thought were purely allergies and sporadic pain but I was still healthy, strong and vibrant. I had a strong motivational drive and was likened to being a "Super Woman" by those who knew me.

Unless they've walked in your shoes, no one can understand the crushing effects of unrelenting stress and severe trauma. My traumas....yes plural, were extremely violent.

I stated in a previous post here that I plan to formally introduce myself in the meet and greet but that "a synopsis of what happened to me is a bit daunting" right now. I am also in the throes of a days long flare. However, I had to reach out to you.................
I understand.

It took me years of tinkering with supplements to get to the point where I had less frequent pain, better endurance and a higher threshold for stress. I believe I've reached the limits of what supplementation can do for me. The healing must come from other tools in my kit.

I do not take pharmaceuticals, I cannot tolerate them as so many raise or release histamine.

I have been going to weekly psychotherapy since 2012....I'm on my 5th therapist. I can't say they've helped me other than being very supportive [the good ones.] The current and former [who retired] learn with me.....I love them for that and actually listening to me.
Medical doctors make me want to cry....and I have in frustration.

Anyway, I am currently reading books on neuroplasticity and rewirering the brain. I used this in the past to get over central pain. It worked!

I believe that this would be a good option for you, at this point.

Start with, "The Last Best Cure [My Quest to Awaken the Healing Parts of My Brain and Get Back My Body, My Joy, and My Life]" by Donna Jackson Nakazawa.

Then read, "Rewire Your Brain," by John B. Arden, Ph.D. This is less technical than his books for therapists and is a "how to" manual.

Hang in there, sweetie, you [and I] will heal; you just have to be your own cheerleader.

Warm Regards,
Michelle

 

[Annamarie]

I do appreciate your reading and answers however I am asking specifically about motivation.

I wrote about my history because I believe the constant unrelenting stress led to high estrogen and high stress hormones. I am no longer int hat living situation. No amount of psychological healing or diet was breaking me out of the cycle of fatigue. I have no more PTSD symptoms after working with Ayauaska but it did not heal my physical symptoms of extreme fatigue and muscle pain which I now believe are hypothyroid symptoms. Aya helped me let go of much of the past and begin to move forward in ways I could not before have dreamed of but like anything it is not a panacea and did not heal the hypothyroidism that I now believe I have had for years and years.

I have had a huge improvement in energy and am now able to work 5 days a week like a regular person even though I have to have a sit down job. I even took a class which I had way too much learned helplessness and fatigue to even attempt before. This huge progress happened after starting cypro and thyroid.

I am asking specifically about motivation. Before cypro I was motivated to play my instrument almost daily and would enjoy playing for hours. After cypro I dont play at all most of the week unless I am at a jam with other people. I have tried to drop cypro but I think it is too soon and my body needs more time in this lowered stress state to heal. I am specifically looking for something to help with the motivation and decrease the "dullness" I am experiencing with cypro.

 

[LUH 3417]

I do appreciate your reading and answers however I am asking specifically about motivation.

I wrote about my history because I believe the constant unrelenting stress led to high estrogen and high stress hormones. I am no longer int hat living situation. No amount of psychological healing or diet was breaking me out of the cycle of fatigue. I have no more PTSD symptoms after working with Ayauaska but it did not heal my physical symptoms of extreme fatigue and muscle pain which I now believe are hypothyroid symptoms. Aya helped me let go of much of the past and begin to move forward in ways I could not before have dreamed of but like anything it is not a panacea and did not heal the hypothyroidism that I now believe I have had for years and years.

I have had a huge improvement in energy and am now able to work 5 days a week like a regular person even though I have to have a sit down job. I even took a class which I had way too much learned helplessness and fatigue to even attempt before. This huge progress happened after starting cypro and thyroid.

I am asking specifically about motivation. Before cypro I was motivated to play my instrument almost daily and would enjoy playing for hours. After cypro I dont play at all most of the week unless I am at a jam with other people. I have tried to drop cypro but I think it is too soon and my body needs more time in this lowered stress state to heal. I am specifically looking for something to help with the motivation and decrease the "dullness" I am experiencing with cypro.

I too felt very unmotivated taking cypro. Getting out of bed is the hardest for me. Drinking coffee gives me spurts of motivation throughout the day and generally staying on top of my diet to make sure I’m getting enough nutritionally dense food helps a lot.

 

[SQu]

I am specifically looking for something to help with the motivation and decrease the "dullness" I am experiencing with cypro.

The dulling effect of cyproheptadine is well known here, though it may take quite a lot of thread-sifting to find info. Yet many including myself also find it too helpful to do without. Notes I make for myself include: it's anti serotonin but lowers dopamine too. Magnesium , taurine, maybe glycine (though some prefer it in the form of gelatin) can really help. Theanine very helpful. I find these very effective for mood. Solves the problem completely for me. I had similar weight gain and CFS. I also take thyroid, Preg, progesterone and they are also pillars of my recovery. I did get treated (somewhat effectively) for chronic infection, not viral like you (rickettsia, one or two others) and would suggest searching threads on the role infection may have played.
Sunlight is also very helpful.