Hello! Thanks for coming to spend some time at SGL!
This time around, as I didn’t take any notes at all this past month on how I was doing, I decided to go through each symptom and fill them out. I was surprised at how often I wrote something along the lines of ‘this has eased’. Even with that being the case, I’ve still been a veritable wreck, so please don’t think that I’ve made some big strides in healing! If that were the case, I’d be announcing it loud and clear on here, believe me! Sometimes, even if things have calmed down, they are still overwhelming and difficult to deal with on a day to day basis.
Overall Health: Very back and forth – Severe migraines and crashing hard for hours at a time to feeling pretty well.
Migraine: It’s still too early to see any changes due to the Aimovig (monthly migraine shot) as I need to take 3 doses before I’ll hopefully start to see improvements. The Rizatriptan that I’ve started taking when they go nuclear have been good to have. Only once did it not seem to help, otherwise, they knock the pain out without any negative side effects. (I have been taking 1/2 a pill only). In this past month, only one nuclear migraine hit- but that lasted several days. Otherwise, the pain has responded to treatments well – and I’ve been able to go to bed without an ice pack several nights.
Sleep: This has been rough for multiple reasons. I took melatonin a few nights.
Memory/Brain Fog: This has improved a tiny bit more, I think
Vision: The odd not-wanting to focus issue has pretty much disappeared. My eyes aren’t hurting as often as they were, either. (not to say that they aren’t hurting at all anymore, it’s just not as often)
TMJ: Less popping, but still often tense and painful
Fatigue: After my nutrient IV, this eased some. I decided to increase Olivirex from every other day to every day – but it caused such terrible fatigue that I backed off of it again. I’ve actually not taken it at all these past 4-5 days. Noticing a big difference, even while on my cycle.
Fibromyalgia: I can’t believe how much this has eased. I still have slight aches in knees and elbows but it’s mostly ignorable. My left calf is still pretty bad but it’s eased as well.
Weight Loss: Baby steps by baby steps, it’s slowly happening
Mood: Oof da. Oy Vay and Augh. This has been a definite struggle.
Digestion: Back to my normal, and perhaps a little better than that even
Current Protocol
My current protocol:
Biocidin, G.I. Detox, Olivirex, Biofilm Phase-2 Advanced, Low Dose Naltrexone, Xiao Chai Hu Tang, Candidastat, Yin Chao, Molybdenum, Berberine as well as CoQ10
Oh dear, I haven’t done a health update since March! It always makes writing these out a bit more interesting when such a length of time has passed. So because of that, I’ll just tell you that from March until around the end of June, I was struggling with debilitating fatigue and joint pain.
And here it is now, nearing the end of August and I’m determined to finish this! Part of the problem is that when I have been feeling well enough to be slightly human, I’ve been focusing on other projects instead of SGL. I really do want to change that and today is the first step in doing so.
SO. Yeah, debilitating fatigue has carried through this latest month as well. With some migraines off the charts.
Overall Health: Ups and downs these past months. But, bad fatigue and getting hit with severe migraines.
6/1-felt tired when got up in am. took hr nap, felt a bit better. head didn’t hurt much, felt well enough to go to dog park. fatigue hit early afternoon. migraine at @ a level 4 at 3pm. calf hurting pretty badly, almost at cramping point in evening. Some migraine but not that terrible. -i’ve noticed that i’m not as itchy or flushed. hands still swollen most mornings. since starting the adrenal support, i think i’ve felt a wee bit more energetic w/ a bit less brain fog.
2nd- very strong fatigue. took 2 naps and didn’t do much at all, all day b/c of it.
3rd-IV late am. strong fatigue all day but antsy energy in afternoon – normal after an IV. migraine kicked up in early evening, calmed down though. YI pretty much gone, heat rash chill today, brain fog strong, mood a little improved. allergies not so bad either. increased adrenal support to 2/day. needing ice pack at bedtime
-think i need to decrease the Yin Chao to 1/day, see if upset stomach eases
4th-woke up w/ migraine, stayed all day. only taking 1 yin chao, helped stomach.
~days in between- lots of naps, fatigue, brain fog. some mood struggles too
8th-started molybdenum. low migraine in am but was able to go to costco. bad fatigue hit on way home, lasted pretty much the rest of day. long nap and doing nothing.
10th- felt a little better, little bit more energy even tho the fatigue kept me blurry brained and was still down most of day. dogpark in am, migraine increased in evening.
April 9, 2020
-started progesterone creme on 11th. have still had strong fatigue but have had strange energy a good portion of both days 11th and 12th. calves are really painful, esp left. got heating pad that helped. brain fog strong.-fatigue has not been as overwhelming as it was in june, pain overall has diminished. still very tired & days of pain though. occasionally more sensitive to light.
9th- itchy in evening. calves are in a lot of pain, twitches on right side. some in left hand too.
13th-felt pretty decent today, til @430. got hit w/ overwhelming fatigue. lasted rest of day. migraine kicked up to an 8 minimum. ice pack at bedtime for first time in @ a week.
16th-felt pretty good all day. got quite tired in afternoon but not awful. stomach upset after dinner,not sure why? fatigue has increased since starting olivirex again (on the 17th). upset stomach many evenings.
22nd-strong fatigue, took nap in afternoon. lost vision in left eye at 830, ice pack, pain pills and short nap helped but then migraine came in. went to bed at 10pm. first time in a long while that i’ve been hit with one of these.
eyes still blurry and kinda painful the next few days. tired. achy. weak.
25th- vision loss again in late evening. cried. pain pills, ice pack, slept about 3hrs in evening. next day took 2 long naps, eyes still hurting a lot, achy body, just sluggish all around.
27th-felt better today, no nap. was able to write/read w/out too much trouble but eyes still painful and need glasses more than normal. completely on LH diet as of monday.
august 4th-good energy in am, minimum pain. fatigue hit @ noon, 11/2 hr nap late afternoon. joint pain kicked up early evening, migraine after that. close to cycle.
9th-fatigue and migraines the past 3 daysish. naps. not much other than ice packs, helping with migraines.
May 7, 2020
Migraine: They aren’t responding to normal treatments as readily. And I’m in the midst of one that’s been going on for almost a week now that I just can’t get rid of completely. I did have an appt with a neurologist for the first time in years and now have some new prescription meds to try and get these things under control
Sleep: I’m getting about 7 hours each night, with the normal 2 or 3 wakings. I do frequently take involuntary naps however. And I’ll add that I never feel rested after sleeping. – this hasn’t changed at all since march.
May 13, 2020
Memory/Brain Fog: This has improved some, but when the brain fog hits – it hits hard and doesn’t want to lift for quite a while. – again, this hasn’t changed.
Vision: Scintillating scotomas have made themselves known the past month odd. my eyes do hurt fairly frequently now and sometimes just don’t want to focus right away.
June 11, 2020
TMJ: My jaw has been tight/tense more lately and has been popping every so often. So this has increased although it’s not where it used to be. I’ll add that i’ve not been as diligent about wearing my night guard when I nap like I know that I should be…
Fatigue: This has been my biggest, most constant struggle for months now. My body just drags and aches every day.
Fibromyalgia: This has eased a bit lately. still present in joints though – especially in elbow and knees.
Weight Loss: Not much, but a little! And i’m excited for that.
Mood: Mostly this has been good…
Digestion: This has been perhaps, a teeny bit better since going on the Low Histamine Diet at the end of last month? I was hoping that there would be more noticeable improvement in this area though.
July 23, 2020
Here’s a list of symptoms that I don’t have as often lately:
-pain in hands/wrists
-severe calf cramps
-nausea from lights/sounds
-falling asleep standing in lines
-exhaustion from standing in lines
-jaw popping/getting stuck
-nightmares
-excessive itchiness
July 26, 2020
So, I guess that I’m still in the midst of that flare that I mentioned back in March. Which explains why I’ve been becoming more of a hermit, I suppose.
All I can say is at least I’m getting this up before June starts. My levels, and types, of pain have made getting this post up such a bear.
Overall Health: It’s been a roller-coaster ride these past six weeks. That’s really all I can think to say about it. I went from doing pretty well during the days and crashing so-so in the evenings to….rough days and passing out at 8pm because I just can’t stay awake any longer. (only to wake up an hour later and not be able to sleep again til midnight.)
Apr 16 started doxycycline Apr 30- good energy most of the day. 1 mile walk plus housework. Migraine kicked up afternoon, clonidine calmed. Started thyroid 9am. Tiny bumps on face in evening, not sure why? May 2- decent energy in am, hit with fatigue around noon. IV in afternoon. May 3- felt pretty well today, fatigue hit afternoon. Tiny bumps on face again this evening and a tad bit last night. May 5- bumps again today, also around collarbone, some itchy. Fatigue early afternoon, napped but then foggy and dehydrated rest of afternoon. Hungry like crazy in evening, migraine kicked up a lot. Observations: fibropain is less intense. Migraines are still sharp and increase a lot in evenings. Clonidine helps, overall but not always. Evening hunger is common. Fatigue is light in am but hits mid afternoon at least. Needing a nap most days. Foggy brain after. Went off of thyroid on may 11th to see if it was causing the rash on my face. Fatigue hit hard whole of following week, rash still present although not as bad? Fibromyalgia flared the same week. Started thyroid back up on the 17th. May 17 – visual aura and nuclear migraine. May 21 Fatigue has eased a little bit since Sunday. Felt off all day, fending off another crash this evening
Migraine: SIGH. The pain has been quite terrible lately, with one full blown visual aura/nuclear migraine this past Friday and three more attempting to blow up.
Sleep: I’m hitting 6 to 7 hours a night, with at least 2 wakings. Majority of them I need the ice pack on the pillow. Several I’m having night sweats -even with the ice, joy oh joy – and of course, never waken feeling refreshed.
Memory/Brain Fog: Brain fog has stayed around again. It’s kept my ability to focus on things at a minimum.
Vision: I have had four FIVE visual auras in the past week. That’s about four more than I’ve been having every few months. I’ve noticed that even in between lately, my eyes aren’t quite right. Looking at black text/white background can be difficult…
TMJ: I have just realized this has eased. My teeth aren’t hurting as much or often as they used to. It has only popped a few times in the past few weeks. My jaw still regularly hurts but overall, this has definitely improved.
Fatigue: This is still my biggest current struggle. It can go from just marginally dragging to laying me out and making me fall asleep within half an hour. (this makes for interesting planning of errands…)
Fibromyalgia: In a way this has decreased slightly. But my left side (top of head down to toes) frequently aches. If I stay away from processed sugar, the fibro stays down –remind me of this next time I’m tempted to cheat and have sugar.
Weight Loss: Non-existent.
Mood: This has been a bit topsy-turvy the last little bit but I’m sure it’s because of the levels of pain I’ve been dealing with. And hormones – hormones out of whack are fun. Eesh.
Digestion: We’re back to my normal! woohoo!
Like I said in my notes above, I went off the Thyroid for several days to see if the mostly invisible rash that has appeared on my face was connected to it. I’m fairly confident now that it’s not, but the rash is still there (at least it is mostly impossible to see!) and I’m not sure why. I’ve also been trying to tell if the doxycycline has helped any of my symptoms, but really, with how I’ve been feeling, it’s so hard to separate the pain, you know? Even doing this update, it’s still all so foggy to be able to tell. I’ve also only been on the doxy for a month and a half, so I doubt that’s long enough to be able to tell anyway.
I will add about the Thyroid though, that I think the fatigue was going down after I first started it – so I’m hoping that will start happening again soon. I mean, I was taking Abby on a mile walk in the mornings, doing some house cleaning and making yummy dinners. Which, for me, is a pretty full/energy burning day. And now I’m barely getting her to the park, doing maybe 20 min of light cleaning and sort of maybe throwing a semblance of dinner together. Augh. I know this journey of healing is an up and down, switchback type of road but I’m ready to be through this particular rough stretch. Especially since I know that the pain in my left side would disappear if I was able to lose some weight.
I don’t like writing these sometimes – although living the pain is obviously worse. Heh. Over the weeks I’d really slipped into ‘pure survival’ mode. Which for me, means I wasn’t doing any detoxing or anything to help diminish the pain except for my vitamins and clonidine. So, beginning of the new year, I have made it a point to do the extra detoxes and other things to try and get me out of this funk.
Overall Health: I’ve taken some steps backward this past month and that is incredibly frustrating. Stomach issues and debilitating migraines and fibro flaring again.
Dec 20- drove to bend. Very tired after but did pretty well all day Dec 21- fatigue and some fibro. Short nap in afternoon, fuzzy brain after Dec 22- decent fatigue, but went shopping. 2 hr nap in afternoon, helped. Some fibro cramps in feet/ constant left calf cramping. Took 1/2 melatonin at night Dec 24- didn’t sleep well last night. Achy all over – teeth, joints etc. So tired. Some migraine Dec 27- drive home from bend. Didn’t crash much at all in evening -Have been having painful twitches for a few weeks. Right eyelid twitching off and on. Fatigue strong but mostly not overwhelming. Dec 29- fatigue and some fibropain. Bad foot cramp last evening that took a while to wear off. Iron breath has returned, even though stomach feels fine. Didn’t take any pills/drops on Jan 1 to see if that helps like it did last time. Jan 2nd – vision loss and nuclear migraine in evening after feeling well all day. Day 25. Jan 3- recovery from last night. Fatigue and sore. Jan 7 – bad fatigue all day with minimal ability to focus. Migraine and fibropain kicked up bad in evening. BAD. E of C? Jan 8 – tired and achy but better so far. Went grocery shopping in am Jan 17- IV day. Fatigue Jan 18. – strong fatigue (probably from yesterday) started feeling strange in afternoon, kinda shaky and like I’d had caffeine or sugar. Stomach worse the later it got Jan 19- stomach still upset. Not hungry in am
Migraine: Two nuclear migraines in the space of a week along with a few almost- nuclear ones. The daily ones have been responding to a combo of tylenol and aspirin better than clonidine lately (so strange).
Sleep: I’m still getting about 7 hours with 2 or 3 wakings in the night. Most nights I am completely exhausted but have to wait til I can get the pain down to a decent level to go to bed.
Memory/Brain Fog: I’ve been struggling with words a lot lately. Brain fog has been a pretty frequent thing as well.
Vision: I had two visual auras in the space of one week. Sigh.
TMJ: It pops painfully frequently and aches so that my teeth hurt daily. The front of my neck has started hurting again as well. I really need to get in to my bodywork doctor soon.
Fatigue: sadly, this has increased once again and stayed strong. I have been resistant to naps lately, just having gotten so very tired of sleeping so long during the day. I’m sure this isn’t a good way to handle fatigue… It’s just been weighing me down every single day.
Fibromyalgia: It’s increased a bit since last month. My left calf is still tense/self flexing throughout the day and cramping in my feet/calves. I’m glad that they haven’t started again in my hands/elbows though. Ice is still the current magic treatment – be it on my calves or neck. If I’m resting, I’ve got one on me.
Weight Loss: Oy. I was losing steadily and slowly and now it’s just to the point where I’m hoping I can start working out again so i don’t end up at the weight I was when I first started losing a year ago. Augh.
Mood: I’m sad to report that this has been touch-and-go the last while. I’ve run out of Xiao Chai Hu Tang and haven’t replaced it. (the price is what’s stopping me but I’m going to have to break down and do it soon.)
Digestion: Not good. I have been struggling with iron breath and sometimes an upset stomach again. Cutting back the amount of pills I take has helped but it hasn’t taken care of the problem. I’m really not sure what’s going on – if it’s something I’m eating or what. But I go in to see my Dr. in a few weeks to talk about it.
And here we go again! This was a very rough four weeks for me in so many ways. I am praying that these next four are easier to get through.
Overall Health: I don’t feel like there’s been improvement this month, what with taking the DMSA (chelation). But my doctor is going to have me start H2PLX, to see if it will help with my chronic fatigue. I did learn that I’ve got Epstein- Barr Virus and my doctor and I have discussed my adrenal fatigue more these past few visits.
Dec 22- felt good today. Some fatigue. Migraine hit in evening. Front of neck hurt too. A bit of mood struggles. Fibropain flaring in yet and hands. Left calf tense all day Dec 25/26 – fibropain flaring, especially in hands. Migraine that’s hard to get rid of. Mood struggles the 25th. Felt good till early afternoon on 26th. Restless achy pain in evenings. -Took dmsa the 26th, to avoid taking it on Christmas day. – 12-27 fatigue. migraine in evening. fibromyalgia flared in afternoon/evening. Hurt to open my hand all the way. Calves cramped most of the night as well. Woke up on the 28th, elbows hurt. Hands swollen. Calves still tight. 12-28 started coq10, 10ml 12-29 have noticed that crossing my ankles left over right causes spasms/cramps in left foot/calf. 12-30 pretty good all day till early evening. Severe migraine to a 9. Fibropain flaring. Day 26/27 1-2 started monthly. Felt some better than the day before but major fatigue. In evening, fibromyalgia flared bad. Migraine. Front of neck. Jaw. 1-3 fatigue. Mental struggles- stressed thinking about errands/leaving the house. —have had a hard time getting my brain to focus for writing/editing lately— napping a lot more than normal this past week–
Migraines: These increased again – I had several debilitating nights in a row, where I couldn’t get the pain down. There have been half-days where I only had a level 4.
Sleep: Most nights, I’m still sleeping about 7 hours (with an average of 2 wake-ups) each night, without any melatonin or theanine. I am still getting the strange/weird/scary dreams but they aren’t quite as strange/weird/scary without the sleep aids.
Memory/Disassociation: I had a few mild cases of anxiety. I haven’t noticed any changes in my memory. No disassociation.
Vision: I think I only had vision loss once this past month. I did have the sparkles in my vision a few separate times though.
“I can feel the emotional effects of so many nights of severe flare ups/crashes. Either tears or anger are imminent”
Fibromyalgia: One of my biggest struggles this time around. My left calf is consistently tight/cramping. As long as I don’t do too much with my hands (!!), they have been good overall. But the overall, moving fibropain has been intense.
TMJ: This is still a pretty constant pain. The left side tends to hover around a 4/10, while the right side stays around a 7 or 8/10. The front of my neck hurts/tight at least a few days a week. My teeth ache and often I can feel the nerves pulsing from my jaw up to my temples.
Fatigue: Like I already said, this was (and is) bad. I’ll have days where I feel pretty good, except the fatigue is weighing me down.
Weight Loss: I have only weighed a few times. But I haven’t been strict on my diet as well as not being able to get up and moving much lately. I am really hoping that changes soon.
Mood: This has been all over the place wonky. I am going to increase xiao chai hu tang this week, as it seems to help even this problem out.
Bladder: This has, again, been a struggle this month. Frequent trips – suddenly urgent trips. ugh.
snuggle time
What I’m currently taking:
Vitamins/Supplements: A, Ashwagandha, B2, B complex, Berberine, Butterbur, Calcium/Magnesium, Chaste Tree Berry, Ceanothus, Coq10, Complete Mineral Complex, DMSA, D3, E, Feverfew, Fibronol, Horse Chestnut, Iron, Iberogast, Noni Fruit, St. John’s Wort, Xiao Chai Hu Tang. and Soon – H2PLX
tinctures : Pulsatilla, Belladonna
essential oils – peppermint, lavender, frankincense, Doterra blends – Motivate, Peace, and a tension one that I can’t remember the name of
Overall Health: Fibromyalgia flared, causing more tears than normal. I had partial vision loss two times. Fatigue didn’t ease much after the IV. I’ve struggled with keeping an even mood the past few weeks. I have started DMSA (chelation) to get the high levels of lead out of me.
11-15 went to Dr Vogel. Stretched back/hip/neck, worked on jaw too. Started xcht again, 1/day 11-16 started fibronol 1/day 11/19 increased fibronol to 2/day 11-22 nauseous, migraine starting am. Traveling to bend 11-23 bad fatigue and brain fog. Needed nap early afternoon. Fibropain flared. Minor pain for day 15 11-25 bad migraine late am, up to an 8 that wouldn’t go down for a few hours. Fatigue. 11-27 tired but feel pretty good. Energy. Jaw hurts. Fibropain flared a bit last evening. 11-28 IV with amino acids. Fatigue. Brain fog. migraine flared in afternoon and evening. Fibropain flared late evening 11-29 fatigue. Nap in early afternoon. Some sparkles in vision. Migraine 12-3 flared in evening. Fibropain especially bad in left calf and ankle. Fluttering pain in feet. Restless pain. Migraine trying to come. Day 25 also, full moon 🌕 –mood a bit funky all week 12-12 severe cramp in right calf early am. Tight and sore all day and the next. 12-15 anxiety before/during running errands 12-16 traveled in afternoon, movie in evening. half vision loss in left eye for about half an hr. Severe migraine hit, was able to SLEEP it off though. 12-17 woke up feeling pretty good. Fatigue. Only some brain fog. Exhausted by afternoon. Some mood…issues in evening
Getting the needle in was – again – painful! ugh.
Migraines: While I’ve had a few level 10 ones, I’ve also had quite a few days where I didn’t need ANY clonidine (pain pills). SO possibly, some improvement?
Sleep: Most nights, I’m sleeping about 7 hours (with an average of 2 wake-ups) each night, without any melatonin or theanine. I am still getting the strange/weird/scary dreams but they aren’t quite as strange/weird/scary without the sleep aids.
Memory/Disassociation: I had anxiety running errands last week. I haven’t noticed any changes in my memory. No disassociation.
Vision: This happened twice this month, but I don’t get as stressed when it comes on, as I used to. A big part of this is, it doesn’t always mean that I’m going to be ‘dying’, like it used to. As long as I eat, take everything I can for it and lay down somewhere, I can normally avoid the extreme migraine.
Abby made it on a friends’ instagram! SO adorable.
Fibromyalgia: This has settled in my elbows and still flares in my pinky and ring fingers sending tingles up my arm. I am able to hold things (crochet, phone, steering wheel, etc) for longer periods of time without it cramping. Had a severe cramp in my calf (like I hadn’t had in months) that took a few days to recover from. Both calves are tight/hurt/mini cramping majority of the time. Feet hurt/shooting pains if I don’t get them up soon enough. Frequent achy/restless in the evenings.
TMJ: While it doesn’t pop all the time, this is a constant pain now. The front of my neck has started hurting frequently as well. My teeth ache and often I can feel the nerves pulsing from my jaw up to my temples. Ouch. I have started going to my bodywork doctor (once a month) again and am hoping to really start seeing improvement in my jaw!
This is what exhaustion and pain look like. Don’t be deceived by how someone looks – so much pain can be hid with a smile.
Fatigue: Once again, this was a major problem for me. I’m thinking a big reason for it, was that we did amino acids push at the end of my IV last time, instead of the poly mba (or is it mva?)
Weight Loss: I have lost about a pound for sure. I didn’t weigh from mid October to mid December. But I am going to get more focused on this again – including being strict with my diet and trying to move more (even if that is just getting Abby on some more walks!)
Mood: This had stayed better until the past few weeks. I’m sure it’s connected to the fact that I ran out of Xiao Chai Hu Tang and am now only taking half my normal dose.
Bladder: This has, again, been a struggle this month. Frequent trips – suddenly urgent trips. ugh.
I’m currently sitting at my parents’ kitchen table, the puppies are running around all excited that it’s finally morning, mom’s making coffee, and the ground has a layer of snow. This is the way to start the day, really. – Well, that was a week ago. How has it taken me a week to get this post up? All well.
I have to admit that I don’t feel quite ready to write this update. Have I just not been paying attention to how I’ve been feeling? Not taking good notes? Or am I just suppressing it so I don’t remember how many awful days I’ve had? But I want to share some news with you – in case you don’t follow me on Instagram :
“…good news from my Dr appointment on Monday: “You’re healing, Laura” Three words that keep ringing in my ears from my doctor appointment. My Dr said them three times as I told her about some of the progress I’ve made in the last 5 weeks. It’s still surreal. As she phrased it, I was in a whirlpool going down. Now I’ve stopped, I’m just bobbing now- it’ll still be choppy and rough going but I’m not spiraling anymore. It was a good visit! I found out a few things, need to get in for some labs soon and finally admitted a few things (ex: going out of the house can cause anxiety! She said she’d guessed that about me and said we’ll probably have to work through those fears as I heal. ) But gosh and golly, I can’t believe it. For more details, keep reading! 😄 I’m not breaking down garlic, or anything fatty; my recent crying bouts just means that I’m no longer so emotionally down all the time that I’m noticing when I am down (did that make sense?); My slow/steady weight loss is a huge sign of healing; sugar definitely irritates my fibro; I’ve been able to work on my novel again! I’m pretty sure there’s more that I’m forgetting but I’m still reveling in those words. 😃💕😄 ”
Overall Health: I have continued to notice that I am able to keep the house cleaner, work on my blog/novel, have less intense disassociation – well less intense flare ups overall. BUT – I had a level 10/disabling migraine that lasted for hours, my fibromyalgia flared awful (worse than it’s ever been) and sleeping is still a trial.
10-24 upped Iberogast to 7 drops/day. Tingles in left hand (ring and pinky up to elbow) Detox bath. 10-25 fatigue today. Migraine in aft/evening that was hard to keep down. Fibropain kicked up. Calves tight and feet hurt. Forgot to do all 7 drops, only did 6 of Iberogast. 10-26 level 10 migraine preceded by sparkly vision/loss. Worse pain I’ve had in months 10-31 IV with 6ccs of poly mba. Fatigue and brain fog all day. Did have a small burst of energy early evening. 11-1 drove to Bend! Some disassociation and migraine flared late afternoon 11-2 disassociation and fatigue all day. Fibro flared awful in hands all morning/afternoon. 11-3 upped Iberogast to 8 drops/day
11-9 cycle started early am. traveled home, migraine flared in early evening but one clonidine calmed it down
11-10 fatigue and achy all day. Took 2 clonidine and detox bath that helped for a few hours. migraine hit about a high 8
~also learned at one of my dr appts that my adrenals are WORN OUT.
*This was the most painful IV yet – with my fibromyalgia flaring in my elbows, she couldn’t get the catheter in. After half a dozen tries on my right arm, we went to my left and finally just put in the needle and put it on slow drip. Also did poly mba at the end – 6 cc’s of it. *
Migraines: Like I said, one level 10 migraine but overall they have stuck to the normal level 7/8 every day. Some days I’ve only needed one clonidine to keep the pain down.
Sleep: This has improved a little. I’m not needing the heating pad or blanket on every night. But the achy fibro makes it really hard to sleep.
Memory/Disassociation: Possible improvement in memory. Definitely some disassociation while on vacation. Sometimes just over-stimulation.
Vision: Once again, this only happened once this month!!
Fibromyalgia: This had settled in my elbows and would flare in my pinky and ring fingers sending tingles up my arm. I am able to hold things (crochet, phone, steering wheel, etc) for longer periods of time without it cramping. It did flare so bad in my hands one day that I couldn’t really pick up/carry anything. By the next day it wasn’t as severe but it was so frustrating and painful. Since then, it has flared more than it was but the last few days it’s been lessening. Left calf still self-cramps and shooting pains in my feet are more frequent.
TMJ: While it doesn’t pop all the time, this is a constant pain now. The front of my neck has started hurting frequently as well. My teeth ache and often I can feel the nerves pulsing from my jaw up to my temples. Ouch.
Celebrating feeling well enough to make some delicious snacks while on vacation!
Fatigue: This eased off and on – probably thanks to the IV. It has still been intense – to where walking across the room is exhausting – but not as consistently bad as last month.
Weight Loss: I honestly haven’t weighed since the beginning of the month, so I really don’t know how this has gone.
Mood: This has improved a little bit more. My inward negativity goes in waves, but it’s better than it being constant. I’m sure that being able to get things done around the house helps with this.
Bladder: This has, once again, been a main struggle this month. Waking about 3 times a night – frequent trips – suddenly urgent trips. ugh.
Whew, finally getting this written! I’m gonna give myself a little plug here before I get started.
If you want more consistent updates on how I’m doing, follow me over on Instagram! I’m on there regularly, sharing how I’m doing with dosage increases, doctor visits and whatever else hits me as I fight to get better! (plus, there’s super cute puppy pictures too)
Overall Health: While fatigue has been less INTENSE, it is still very present, making it one of my main struggles of the month. Dealing with reaction to Iberogast. Not getting good/enough sleep. Bladder issues.
9-12 IV today. Brain fog but ‘compelled to DO’ today. Drove down to Bend on my own! Days away from cycle 9-14 fatigue day. Migraine kicked up. Bit of brain fog. 9-15 worse fatigue today. Level 9 migraine in evening. 9-19 upped Iberogast to 2 drops/day. Felt bad in afternoon and awful in evening. Migraine. Jaw. Achy. Etc. 9-20 same reaction this aft at yest. But not quite as intense perhaps? 9-22 putting Iberogast in warm water rather than hot tea. Seeing if this helps my reaction/detox to it. Yesterday’s fatigue was intense. Back hurt in evening 9-27 aft. sparkly vision. Severe migraine and fatigue rest of day 9-28 migraine and fatigue hit in afternoon 10-1 fatigue lingered today, able to get out though. Napped in afternoon. Migraine kept down with 2 clonidine. Upped Iberogast to 4drops/day in evening 10-3 IV today. Added poly mba at the end, along with glutathione. 10-4 woke up achy and tired but had a burst of energy rest of morning. Migraine kicking in early afternoon. Severe migraine and bad fibromyalgia in evening. Rough night. 10-5 woke up rough and weak. 10-6 woke up pretty good. Tired but ended up with a lot of energy most of the day, despite brain fog. Migraine and fibropain kicking in mid evening. Can’t seem to stop it.
10-9 upped Iberogast to 5 drops/day 10-10 fatigue and just feeling overall awful this am. Want to get things done but just can’t…. So tired. Woke up with migraine. After a few hrs was able to get up and DO. migraine flared off and on all day. Only flared a bit in evening.
Migraines: I have done better keeping track of these on my migraine app. Still a little wonky so I can’t use all of the feedback from it but here are a few. These have been averaging at a level 9. Aura and Prodrome are : headache, muscle stiffness and tingling in head. Triggers seem to be: body aches, interrupted sleep and lack of sleep. Top 3 symptoms are neck pain, fatigue and jaw pain. They typically start in the temples, eyes, jaw and base of skull. Most days I can get the pain down to where I can function – and get things done.
~ an ice pack has been my go-to lately. laying on it, or having it on my forehead helps so much.
Sleep: This has been a big struggle for me. Falling and staying asleep is so hard. I always sleep with my heating pad under my neck.
Memory/Disassociation: At times I feel like my memory is getting better but I don’t think it is. (no joke intended there, hehe) I will say that I have’t dealt with disassociation this month. Over-stimulation, yes. Frequently.
Vision: This has only happened once this month. I am so relieved about this!
Fibromyalgia: It has reached drive-me-insane level a few times this month. Augh. My joints regularly hurt – especially my elbows. And that often spreads tingles to my pinkies and ring fingers. It is just about guaranteed to happen if I’m holding something (phone, book, crochet, steering wheel etc) for a long time. (this has improved a bit from last month!) Ice, advil and light massaging help. The self-cramping that my left calf does and the ripples of pain that shoot along the bottoms of my feet still happen. But my hands aren’t self-cramping as bad although I do have to stretch my fingers out often because they just HURT.
~Pain and anxiety go hand in hand.~ The last few days I’ve felt a restlessness to be HEALTHY, to be WHOLE. To be past this struggle. I feel as if parts of me are dying, withering away under all of this stress, physically and emotionally. I’m impatient to move on with my life. But I remind myself that my main goal needs to be to keep my eyes on Him – the One who is my Refuge and Strength. No matter what earthly trial I am in, He alone is my Salvation, my Rock. As long as I keep my eyes on Him and ask that my will ever is aligned with His, I will have lived a good and full life.
TMJ – This has been popping/hurting a lot still and I’m thinking it’s because I haven’t been to the bodywork dr in months. My teeth ache quite frequently from the stress of me clenching/grinding them at night.
Fatigue: As I said above, this is one of my main complaints from this month. The deep-seated fatigue that just aches and drags me down. I still am compelled to get up and DO things but sometimes the two opposites are at war with each other. Some mornings I am stuck on the couch but then can get up in the afternoon. I want to make a distinction – before it would be so bad that it was hard for me to stay upright in a chair, and I mean, really hard. Now though, while it is still difficult, I rarely am struggling to stay in it rather than feeling like a cartoon where the character just melts off the seat into a puddle. So, while the fatigue is still bad, it’s not where it used to be.
Weight Loss: I have come out even this month – losing and then gaining it back. I’m a little bit frustrated but I have been less strict on my diet, so….. (by that I mean that I’ve had starch here and there)
Mood: This has improved…sort of. My inward negativity goes in waves, but it’s better than it being constant. I’m sure that being able to get things done around the house helps with this.
IV time again – Hallelujah! Lovely nutrients with gluithione at the end. We’re also going to try a bit of poly (can’t remember the full name right now) at the end as well to see how I do with it. Was able to have a good talk with the Dr about next possible steps, with some suggestions for tests before the end of the year. Brain fog and fatigue are hitting hard today.
Bladder: This is the other main struggle this month. I can’t get back to how my digestion/bladder were a few months ago. (is it really that long ago?) Even when I was cutting out ALL processed and starch. I am waking up typically 3 times a night to go to the bathroom, even when I don’t really need to.
~I wanted to do a quick update of my progress from this time last year. I’ll try to keep it short. I still struggle with many of these same symptoms as well as have added quite a few. (oh joy). But I have more energy overall. And we’ve figured out more of what’s going on with my body to combat it!
What I’m currently taking:
1 each day of A, B complex, Calcium, Chaste Tree Berry
2 each day of Ashwagandha, B2, Berberine, Butterbur, D3, E, Feverfew, Fibronol, Magnesium, Xiao Chai Hu Tang, Noni Fruit
3 a day St. John’s Wort
1 drop Ceanothus one day a week. 5 drops a day Iberogast (slowly upping)
on Days 15-28, 1 Horse Chestnut Extract and 2 Chaste Tree Berry
Clonidine – prescription pain pills. Averaging 2 a day
Gelsimium, Pulsatilla, Belladonna, phosphorus and one more… – tincture in water that I take when I need relief
essential oils
~Several of these I need to increase, but I’m focusing solely on the Iberogast right now.
I know this was long this month but I wanted to get it all in!
How have you been this month? Do you have any questions for me about what I’m taking/doing? Ask away!
It’s interesting to go through the past few health updates each time I write a new one to see how I’ve progressed/regressed. It is so easy to just see the mountain you’re climbing that you forget how far you’ve already climbed! The struggle with this battle is that there’s dips and valleys and straight-up peaks that I’ve got to get through and over. Some days I don’t feel up for the challenge but right now, I’m ready for it. I will one day be healthy enough to have the homestead I dream of. I will.
Overall Health: I have had some LOW lows and some pretty good highs this past four weeks. But, the lows don’t seem to be lasting quite as long as they used to. I even have gotten out for some fun a few weekends.
Notes: 7-7 teeth are aching. migraine. Fatigue all day. Need to take a bath but it’s just too much. Fibropain is kicking up late in evening 7-8 fibropain is in arms, not severe just.. There. Migraine trying to kick in. Tired but can’t sleep 7-9 fatigue and migraine all day. fibromyalgia flaring bad this evening can’t sleep 7-13 fatigue not quite as intense. Fibropain flared in left hand and in calves. Migraine came in evening. 7-18 slight pain over heart. Fatigue. Migraine trying to kick up -able to be out and about for @6hrs. Back and feet hurt after 7-19 started liver ‘pill’ trial. Went out for a few hrs, migraine kicking up early afternoon. Fatigue and migraine even after 2hr nap. 7-21 woke up with bad fatigue and migraine. Had to stay home all day. Took two naps, over an HR each, didn’t help with fatigue. Going to bed with level 8 migraine and exhausted. Some fibropain today too. Days away from monthly 7-23 (yesterday i felt pretty good) migraine, nausea and fatigue today. Took a 2 hr nap. Woke up dehydrated, as usual. Brain foggy. 7-24 afternoon/evening severe (level 9?) migraine. Fibropain flared but not severe. 7-26 level 10 migraine. Vision was funny off and on all day. Got sparkles in left eye around 4pm. 7-27 starting fibronol again 8-1 IV today. Woke up shaky, weak and migraine. Severe migraine in evening 8-2 woke up with migraine. Got it calmed enough to sand chair for half an hour 8-3 upped fibronol to 2a day 8-5 another vision loss migraine. Pain didn’t stay severe as long. Nausea. (had gone to see movie in a theatre) 8-7 started Lightning Pearls. Felt pretty good today, migraine kicked up early aft.
8-12/13 felt good overall. so days 21/22 of cycle. still took a few clonidine each day
8-14 worked out for half an hr. upped lighting pearls to 2 a day.
We added glutathione to the end of my IV this last time. The IV’s help so much in reducing my symptoms that I’m excited to add more helps to them.
Sleep: I ran out of Theanine so I was taking melatonin almost every night to help me get to sleep and boy, oh boy, that’s never a good idea. I finally figured that even with how poorly I sleep on my own, at least I wouldn’t be having the nightmares that regular melatonin brings. Thankfully my new bottle of Theanine arrived the other day
my ‘you don’t always have to be thankful it’s not worse’ face
Memory/Disassociation : These are both unchanged I believe. Although this past Sunday we were out and about all morning and I did very well.
Vision: Along with getting level 10 migraines more frequently, my vision has been ….funky. When those severe ones hit, I’ll lose the sight in my left eye. Thankfully, we have figured out the treatment to get the pain down quickly (or even avoid the severity altogether) as I used to lose sight for half an hr. And then the pain would swoop in about 20 minutes later and last HOURS. So I’m glad we’ve figured out part of it. But now I’m noticing just… irregularities with my sight sometimes. Trying to read – computer or printed page – can be nauseating and the light/words seem to move.
Dizziness: This has only been present a few times
Fibromyalgia: While I will feel discomfort/tenseness in my calves and writsts/arms, and occasionally shooting pains, the drive-me-insane levels haven’t come back this month. I am curious if this is the fibronol doing its thing. Ice and advil and heat are still my friends for this
Fatigue: This has been back and forth. It will knock me out flat for days at a time and then be on the back burner. I’ve noticed that sometimes getting up and doing something for a few minutes helps ease it
I now need this shirt
Weight Loss: I haven’t been as consistently strict on my eating this past four weeks which means I haven’t done as well at losing weight.
Mood: Still no major mood swings but it’s still been a struggle. Getting frustrated easily, or just having negative thoughts a lot would throw me all off balance. It has been better the past several days though
Bladder: This had been marginally better but not anymore.
~In an effort to focus on the things that I can do, here’s a few things that I’m currently thankful for : I’m able to make dinner almost every night. I’m now able to drive myself to my doctor appointments. I’m also able to run errands on my own. My attention span has been a little bit better.
~On the flip side, little irritants : the floaters in my eyes lately are driving me crazy. my hands instinctively curl up/tense, which hurts. If I sleep at all without my night guard, I pay for it. severely.
I feel like we’ve made a few strides forward this month and I’m just praying it continues
Hello friends! I hope you’re having a wonderful day. I’ve been sharing a series of posts filled with articles on living with – and being a supporter and encourager of someone with – chronic pain.
the start of a good life 