I’ve been a little 2 steps forward, 4 steps back. Some recent hormone tests showed cortisol through the roof, all other hormones tanked. I was told my stress was just too high, which seems ridiculous since I haven’t been able to work for Quite a while and my long suffering husband does his best to pick up all the loose ends. I’ve been resigned to this new normal for quite a while and feel no capacity to ‘stress’ about it. (Though family and friends say it must be stressing me. Believe me I know what stressed out feels like and my MO is more like watching the world go by but breathing in and out. Diaphragmatically whenever the notion pops to mind.) I can meditate really well due to brain fog creating a blank slate. So what gives.
After much research and little improvement, ordered second round of hormone tests but see that even if a referral to an Endicrinologist leads to an answer, it’s nearly guaranteed to not have a good result improving my state of well being.
In the past adding cbd oil could help daily functioning quite a bit but go-to brand had been out of stock for quite a while. Scored 2 bottles this weekend and started trying to recover. It took only a morning to feel 80 percent better. Going to spend the week looking to stock up on the cbd oil; also looking forward to receiving 2 new migraine protocols in the mail this month. One is a vagus nerve stimulator (price tbd but first month trial is free, yahoo) and the new migraine prevention monthly shot. Fingers Xd all around!
I’d hired a life coach who did not know what to do with my low functioning CFS/me mast cell self. It was super frustrating and expensive. Since discovering she was trained by Martha Beck, Google entered into the picture and many podcasts, books, PDFs have helped me start sorting out my life now that I’m feeling better.
I LOVE this blog post about using spoon theory to also notice what gives you a spoon, even if it’s a tiny espresso size.
We’ve been gone on vacation to Whitefish MT the past week; it was a success in that I had more energy overall and could participate in meals and some walking outings. I’m hopeful that this week’s DUTCH-hormone testing at ND will improve things further.
In the meantime, I’m struggling a bit with finding a balance in pushing the envelope to ease out of the habits of just squeaking by. I could use some advice! Setting modest daily goals for now.
I made the decision to hire a life coach probably 3? months ago when I was feeling fabulous and thought I’d get back to work. In hindsight I think I felt so good because of finally getting first bit of thyroid T3 meds and doing lllt laser treatments at same time which combined for superstar energy. I absolutely will get back there! In the meantime, this coach of mine has really been a mixed bag. I’ve thought about just taking a loss and cancelling last sessions but figured I’m used to low value specialist appointments. The person was trained by Oprahs coach Martha Beck, and seems to want people to find their ‘real’ calling to replace typical career. After being sick so long I’m all about helping pay bills with a steady income. Now that I’m feeling pretty good again (thanks increased T3 & lllt!), the coach wants me to ponder how I’ve benefitted from being ill so long. Erm– I am the master of looking on the bright side, but this smacks of how could I have caused Cfs and ‘hung onto it’. Puhlease. It is not my fault doctors are ‘practicing’ medicine and can’t diagnose thyroid resistance to save their lives. My life.
Onward to goal setting. Any other ideas please share, have Google-fatigue on Cfs recovery steps which amounts to preachy ridiculous stuff like graded exercise. Without the T3, exercise would have dug me further in the hole Fer Sure. On bad days I just wave my arms in the air for a couple mins. Ha!
Made a big pain/nausea connection last night. My son and I have many food sensitivities. Mine seemed to start early thirties but he was born with them. He’s been having much less pain and nausea since starting Mast cell activation disorder treatment, but I’ll still check in a few times a day to ask his pain/nausea level. He hasn’t been above a three in either (down from 7/8s) since starting MCAD Tx.
Was googling my Fibro muscle pain during mild insomnia last night and saw Dr Myhill references to lactic acid/d-lactate. BINGO. We have been trying to sneak in some dairy now and then to ensure good calcium levels and no more broken bones. Turns out dairy causes quick path to lactic acid overload in folks with mito challenges. In neck/shoulder for me due to old scar tissue from work injury; tightness in that location used to lead to chronic migraine til I had insane amount of Sarapin/B12 trigger point shots to get the spasms to ‘let go’. For my son, dairy seems to be correlation between rising from 0 to 3 in both stomach pain and nausea, as well as random muscle aches in legs and shoulders, and very noticeable fatigue. Daiya fake cheese, we are coming back to you!
I’ve come full circle. End of last year tried low level laser treatment for Fibro muscle spasms and was delighted to find the days after treatment I had MUCH increased energy. I went from a 1-2 on the Cfs activity scale to being so active I thought I could return to work. I organized the kitchen! I made a full bed-sized blanket and started the next! I was also trying several other treatments and lllt was most expensive so have been relying on less expensive options for past months. I have returned to 1-2 on Cfs activity scale so restarted lllt this week at a new location.
This Dr knew exactly what I was talking about concerning the energy boost and said he has another patient with Ehlers and CFS- they started laser treatments on spinal column: first 3x weekly for couple weeks, then twice weekly, weekly, monthly. Patient went traveling for months & months and eventually relapsed, came back for lllt and is now on a monthly maintenance schedule.
So excited I can possibly get my life back and may just need one lllt maintenance appointment monthly. Will post updates.
About 6 months ago my brilliant naturopath suggested I research low dose naltrexone or LDN as an optional tool in my healthcare. I gave it a try, and only in hindsight after letting prescription refill linger for 2 months did I realize what a huge positive impact it has had on my health. I restarted taking LDN daily about a month ago and had immediate improved energy, concentration and lessening of food sensitivities. I am attempting to get a prescription for my son (recently diagnosed with inattentive ADHD and MCAD) – it is an uphill battle. There is quite a bit of data online supporting LDN for pediatric chrons, PANDAS and autism behaviors. I am determined to find help for him. Thank goodness for the Internet.
/// Update regarding low dose naltrexone::: the medicine helped in so many ways, my favorite being ending shingles recurrences (10 plus outbreaks last year! Grr) However– since discovering iodine deficiency and supplementing that, I’ve dropped ldn and have even better results. Ldn did bridge the gap! ///
We’ve been at wits end past several months with eleven year old sons constant tummy troubles. Finally got in to see an allergy specialist that I requested referral to specifically because of seeing mast cell disease mentioned on his website bio. Son was diagnosed with mcad- tentatively as we try out meds and await his serum tryptase results. I wanted to post the prescribed meds because if I had ANY idea of what was safe for an 11 year old I would have already tried this and saved him waiting for months and months. Recommendation was one zyrtec daily and twice a day a 75mg Zantac. He already is taking 100g ketotifen at meals and bedtime. I hadn’t been sending the lunchtime tab to school but doing so now!