I’ve recently had several of you ask about how I treat certain issues, so I decided it’s time for an updated protocol post. This will be my first since 2019.
For those who aren’t familiar with my story, I was diagnosed with fibromyalgia in 2014. Two years later, I found out I have chronic Lyme disease. My doctors believe Lyme is the underlying cause of my fibromyalgia symptoms, so we were all hopeful I would get better once we treated the Lyme and coinfections.
I am better in some ways. The pain levels in my lower body are less than they were before Lyme treatment, and my fatigue isn’t quite as bad, but I’ve added several new diagnoses in recent years that have offset the progress I’d made toward healing fibromyalgia and Lyme.
When I first started Fed Up With Fatigue in 2015, I remember reading your comments and emails, and so many of you were living with lengthy lists of chronic medical conditions. I remember thinking how lucky I was that I only had to deal with fibromyalgia and later Lyme.
All that changed in 2017 when a disc in my lower back herniated, and I required surgery on it a year later. That surgery started a now three-year slide in my health status.
I consider the surgery to be a failure because the disc re-bulged three weeks post-surgery, so I still live with lower back pain every day. Three weeks after the disc re-bulged, I developed a spontaneous cerebrospinal fluid (CSF) leak. Doctors still don’t know what caused it since it was two to three vertebrae levels higher than my lower back surgery. I spent six months lying horizontal in bed or on the sofa because every time I’d stand or sit up, the fluid would drain out of my spinal fluid sac, causing my brain to sink down into my skull, triggering the worst headaches I’ve ever experienced.
It took three attempts to patch the leak. When the leak was finally repaired in January 2019, I thought my nightmare was over, but unfortunately that wasn’t the case. I spent another three months on bedrest, trying to get my intracranial (i.e. brain) pressure to stabilize. It never has.
I developed a complication called intracranial hypertension, which essentially means I have too much cerebrospinal fluid/high pressure on my brain. As a result, I’ve suffered with chronic daily headaches for three years now (six months of the CSF leak + 2 1/2 years of intracranial hypertension/high-pressure headaches). And when I say “daily,” I mean that literally.
I’ve had 5 headache-free days in three years. Yes, only five.
Last year, I had an upright MRI that showed I now have a chiari malformation, which means a portion of the cerebellum of my brain has herniated down into my spinal column. The chiari was caused by my previous CSF leak.
After two years of headaches at that point, I was actually thrilled the chiari showed up on the MRI because I thought I’d have surgery and get on with my life.
But my hope was short-lived because three different neurosurgeons gave three different opinions, and none of them have done anything to fix the headaches or the chiari that’s causing them. One neurosurgeon said I have a chiari, but it’s not large enough to cause the headaches and other symptoms I’m having. The second neurosurgeon said I don’t have a chiari at all. He said the radiologist who read my MRI didn’t measure correctly.
And my third neurosurgeon – someone who is supposedly a chiari specialist – has done pretty much nothing for me except collect copayments for three appointments and add “craniocervical instability” (CCI) to my ever-growing list of diagnoses.
(The documentary, “Unrest,” featured patient Jennifer Brea’s struggle with chronic fatigue syndrome (ME/CFS). She was later diagnosed with CCI, had surgery and is now recovered from ME/CFS. Turns out there’s a segment of us with ME/CFS and/or fibromyalgia who actually have CCI, which is a fixable condition if you can get correctly diagnosed. You can read about Jennifer’s recovery here. CCI could be “the answer” for some of you!)
At our last appointment, my chiari specialist said my pain levels aren’t high enough to justify surgery. Easy for her to say when she’s not having to pop pain pills and ice their head and neck nearly every freaking day.
Can you tell I’m bitter? I am just tired of my head hurting all the time. My husband and I are divorcing, and I’m moving back to my home state of Virginia this summer, so I am already looking for another chiari specialist.
Needless to say, the ongoing headaches, severe neck pain and other chiari/CCI symptoms have dominated the fibromyalgia and Lyme, and frankly it’s hard to tell what condition is causing what symptom at this point since there’s so much overlap.
My primary symptoms are currently:
- Chronic daily headaches and migraines
- Moderate-to-severe neck and upper back pain
- Short-term memory loss
- Inability to concentrate
- Brain fog
- Loss of balance
- Loss of strength in my hands
- Temperature dysregulation (hot flashes alternating with chills)
- All-over fibromyalgia/Lyme pain and body aches especially in the lower body
- Lower back pain from bulged disc
- Neuropathy in my feet
- Overactive bladder
- Sleep dysfunction
With all that out of the way, let’s get into my treatment protocol! I am including EVERYTHING, so this is a long read.
Disclaimer: I am not a medical professional. This post is for general information only and is not a substitute for medical care. Please talk with your medical provider before beginning any new treatments. This post may contain affiliate links.
Vitamin B complex – I can’t take a multivitamin anymore because vitamin A increases the pressure/fluid on my brain, so one of my doctors recommended at least taking a vitamin B complex supplement. I haven’t noticed an improvement in symptoms taking the B complex. Mainly I just take it in case I’m not getting enough B vitamins from food, it’s inexpensive and I’ve read some B vitamins may help with headaches.
My dosage: One capsule with breakfast.
Vitamin D3 – Some studies indicate vitamin D can be helpful for fibromyalgia pain. Personally, I’ve never noticed an improvement in my fibro pain when taking vitamin D, but it does help my lower back pain, so I’ve kept it in my protocol.
My dosage: One 5,000 IU capsule with breakfast.
Magnesium glycinate – You’ve probably heard me say this over and over, but magnesium was the first supplement I added after my fibromyalgia diagnosis, and I have taken some form of magnesium ever since. This is good stuff!
Magnesium has so many uses. It helps quiet the all-over body aches that come with fibromyalgia. It relieves my restless legs and leg/foot cramps. It improves sleep, and it keeps me regular.
Back in 2019, I only took two capsules of magnesium per day, but I doubled the dose when I started a migraine medication that causes constipation. (Sorry if that’s TMI but I’m sure many of you can relate.)
My dosage: Two capsules with breakfast and two more with dinner.
Note: My former fibromyalgia specialist said to always choose a form of magnesium that ends in -ate (glycinate, malate, threonate, etc.) and to avoid magnesium oxide because it’s not well absorbed by the body and causes diarrhea.
ConcenTrace – ConcenTrace has magnesium, but it contains trace minerals as well. Our agricultural soils are depleted these days due to over farming and other environmental factors, so ConcenTrace is my attempt to put those trace minerals back into my body on a daily basis.
Also, I find ConcenTrace staves off that all-over achy fibro pain better than the Pure Encapsulations capsules mentioned above whereas the capsules work better for maintaining bowel movements.
My dosage: Half teaspoon diluted in cranberry juice and taken twice a day on an empty stomach in the morning and at bedtime.
Biosil – I use this collagen-based product to support my body’s tissues, and it also helps to detox aluminum from the body.
My dosage: Five or six drops diluted in cranberry juice and taken on an empty stomach in the morning and at bedtime.
Fibromyalgia & Lyme pain
Medical cannabis – I use medical cannabis every day – usually at bedtime because I need to function during the day to work. I’ve covered how I use cannabis in a video, so I won’t repeat all of that information here.
For pain management, generally I’m using tramadol (see below) during daylight hours, then I use cannabis after dinner or at bedtime to help with pain relief and sleep.
My dosage: I don’t have a set dose. I use various forms including vape cartridges, oil, edibles and capsules. It just depends on what I source from my local dispensaries.
Tramadol – I use more tramadol now than I did during my last protocol update in 2019. That’s mainly due to the severity of the chiari-related neck pain but it also has the benefit of helping with my fibromyalgia pain. Of course, nothing takes all the pain away. For me, tramadol just takes the edge off, and sometimes it doesn’t even do that.
My dosage: 50mg as needed for pain. I use tramadol on average around four or five days a week. At one point, I was down to maybe one or two days a week, but the chiari changed that.
Low-dose naltrexone (LDN) – LDN is one of the only medications that’s ever made a noticeable difference in my fibromyalgia/Lyme pain levels. It also gives my immune system a boost, so my Lyme doctor recommended it.
If you have fibro and haven’t heard of LDN, I would encourage you to research it. I have a whole page of links to help you get started. In small trials, LDN outperforms all three of the drugs currently approved by the FDA for fibromyalgia.
I know some may wonder how do I use tramadol AND LDN since doctors generally don’t combine those medications. If I have to take tramadol late in the day, then I skip my dose of LDN that night. As long as I space LDN and tramadol at least six hours apart, I haven’t noticed an issue with LDN counteracting the tramadol.
Dr. Ginevra Liptan discusses using LDN with opioids in this article.
My dosage: 3mg at bedtime
Resonant Botanicals lotions – I continue to use Resonant Botanicals’ pain-relieving lotions every day after my shower. My current favorites are Neuro-Soothe (best for nerve pain) and Painless X (best for more general pain). All of Resonant’s lotions contain hemp CBD oil, magnesium and other natural pain-fighting ingredients.
I’ve reviewed several Resonant Botanicals products over the years including:
All of them are fantastic.
I’m way behind on my review posts, but I will share my opinion on Resonant’s Royal relief for intense pain in the near future.
My dosage: Applied to entire body at least once a day.
Headaches and chiari-related neck pain
Diclofenac – I probably would have thrown myself off a bridge by now if it wasn’t for diclofenac, a prescription anti-inflammatory. It’s the only thing that actually reduces the severe neck pain caused by the chiari. I don’t think I could function without it.
Of course, being an anti-inflammatory, it’s also helpful for some of my other types of pain. I am careful to take it with meals, so it doesn’t harm my stomach.
In addition to oral diclofenac, I use the diclofenac gel that’s now available over the counter. I carry a tube in my purse in case I need it while I’m away from home.
My dosage: 100mg ER with breakfast.
Tramadol – I use tramadol primarily for chiari-related neck pain, but as previously mentioned, it also helps a bit with fibromyalgia/Lyme pain. I often combine it with Aleve because I find that gives more relief than taking tramadol or Aleve by themselves.
My dosage: 50mg as needed for pain.
Aleve – The neck pain and headaches caused by the chiari are usually at their worst by the end of the day, so it’s not unusual for me to take an Aleve coupled with a tramadol in the late afternoon or evening.
My dosage: 220mg as needed for pain.
Aimovig – Along with the chiari headaches, I also get migraines. (I classify a migraine as a one-sided headache as opposed to my chiari/high-pressure headaches that encompass the entire head. Luckily, I don’t get an aura like many migraine sufferers.)
Aimovig is one of the newer once-a-month injectable migraine medications. I used Emgality, a competitor to Aimovig, for about a year, and it reduced the number of migraine headaches I have each month.
Earlier this year, a new research study showed Aimovig can be useful for reducing high-pressure headaches, too, so I asked my headache specialist to switch. I’ve been on Aimovig for three months now, and it works as well as Emgality for migraines, but it hasn’t done anything for the chiari/high-pressure headaches.
My dosage: One 140mg injection per month.
Note: Aimovig and Emgality are expensive because they are newer drugs, but both pharmaceutical companies offer discount cards where patients can get a certain number of months for free. I never paid for any of my Emgality, and I only pay a $5 copay for Aimovig. I am hoping I can still afford Aimovig or Emgality when my discount runs out.
Amitriptyline – I have a love/hate relationship with amitriptyline. Over the past two and a half years, I’ve tried more than a half dozen different medications in an attempt to reduce my daily headaches. Amitriptyline is the only one that’s reduced the severity of my headaches.
But that little bit of relief has come at a cost. I’ve gained 35 pounds after being on it for a year, and the weight gain brings its own set of problems (increased inflammation, pain, etc.).
When I took amitriptyline in 2014-15 for fibromyalgia, I gained 40 pounds, so it’s definitely a repeat offender.
I’m trying to figure out an alternative drug that won’t cause me to blow up like the Pillsbury Dough Boy, but SSRI and SNRI antidepressants don’t generally help headaches, and every other tricyclic antidepressant causes weight gain.
My dosage: 37.5mg with breakfast and at bedtime.
Imitrex – Imitrex is one of the triptan drugs that supposedly helps break a migraine before it gets really bad. I’ve had mixed results with it. Sometimes it works, and sometimes it doesn’t. But when it does work, I’m thankful for it.
My dosage: 50mg as needed for migraine.
Benadryl – In addition to the chiari, my histamine levels impact the severity of my headaches. I keep some sort of head pain nearly 24/7 but sometimes it just feels like pressure, and other times it’s a fully manifested headache that starts in the back of the head where the head and neck join and then radiates into my jaw and temples before eventually encompassing my entire face and head.
Whenever I have a long-lasting headache that won’t alleviate with other treatments, taking Benadryl will sometimes break it. I’m assuming that’s because Benadryl is reducing my histamine level, which is one of my primary headache triggers.
My dosage: 25mg as needed.
Headache Hat and ice – Thank God for the creator of the Headache Hat! I don’t think I could have survived the last three years without my Headache Hat, which is a band of fabric containing an ice pack that encircles the head.
The icing doesn’t stop the headache and neck pain – it just numbs it a bit – but nothing feels better than an ice pack on my pounding head. I even take my Headache Hat and ice packs with me in a cooler when I travel because I’m that dependent on them.
And thankfully, ice is pretty much free…
Magnesium and ginger – I try to be diligent about taking my full dose of magnesium every day because it’s supposedly helpful for reducing headaches. I also drink at least a can of ginger ale (sweetened with monk fruit, not the brands with high-fructose corn syrup) – because, again, there’s some evidence ginger improves headaches.
Lower back pain
Gabapentin – I’ve taken a very low dose of gabapentin for many years to help with lower back pain/sciatica and the neuropathy in my feet. I’m fortunate that tiny dose actually helps because I’m loopy and out of it if I take over 200mg.
My dosage: 100mg with dinner.
KT Recovery + Wave (formerly known as the ActiPatch) – This little gadget sure doesn’t look like much, but it’s a powerful tool in my protocol for lower back pain. I wear it 24/7 except for when I’m in the shower, sauna or doing something super sweaty. If I don’t wear it, I’m lame from lower back pain within two days, and that’s no exaggeration.
Otoba bark and cat’s claw tinctures – These two tinctures have served as natural antibiotics in my Lyme treatment since 2017. I will likely use them for the rest of my life because every time I try to stop them, my Lyme symptoms come back.
My usual supplier Wildcraft Herbs closed their online store in March 2020 to move to a larger facility. Unfortunately, the pandemic hit right around that time, and Wildcraft Herbs has been waiting for the Canadian government to give an approval to sell their products again.
Once their online store is open, I will definitely resume ordering from them because I find their products to be very potent, and it’s more convenient to buy all of my tinctures from one website. (Plus, I love their beautiful labels. It’s the little things, right?)
My dosage: One dropper of each tincture diluted in cranberry juice taken on an empty stomach in the morning and at bedtime.
Note: Otoba bark and cat’s claw are botanically equivalent to NutraMedix’s banderol and samento, but are much cheaper.
My dosage: Half dropper diluted in cranberry juice taken on an empty stomach in the morning and at bedtime.
Atovaquone/proguanil – A few months ago, I ran out of CSA Formula and decided not to reorder because I’m trying to find ways to save money on my treatment. Within a few weeks, I started having hot flashes to the point where I sweat through my clothing. All day long, I’m pulling a long-sleeve shirt on over my tee shirt, and then taking it off, and then putting it back on, and then taking it off again. It feels like I’m burning up from the inside, and it sucks.
I was hoping atovaquone/proguanil would alleviate my temperature dysregulation, but it hasn’t. I’m questioning if I even have babesia now.
I guess my hot flashes could be hormonal. I’m 48, so it’s time for “the change,” but my periods are still regular. It might also be chiari related. The medication isn’t causing any side effects, so I’m going to finish the 30-day regime and stop.
My dosage: 250mg atovaquone and 100mg proguanil at breakfast.
Houttuynia, sida acuta and Japanese knotweed tinctures – I’m certain bartonella continues to be a primary driver of my day-to-day symptoms. It’s even linked to my craniocervical instability diagnosis because bartonella damages the body’s connective tissues.
I was able to alleviate the bulk of my bartonella symptoms when I took prescription antibiotics in 2016-17 for 15 months. However, I think my cats keep re-infecting me. It’s reported that all outside cats carry bartonella, and it can be spread through scratches and bites.
I try to be really diligent about washing any scratches immediately and using an antibiotic cream, but I’m getting scratches almost every day because my babies like to hang onto my shoulders and upper arms while I’m holding them, and they like to knead my legs when they’re settling down in my lap.
My first Lyme doctor told me to get rid of my cats, but I will never do that. They bring me too much joy, so I will likely treat bartonella for the rest of my life.
I stopped my bartonella tinctures a few months ago to see if I might have kicked the infection entirely, but my symptoms (irritated bladder, bottom of foot pain, shin pain, burning feet, etc.) returned within a month. I added the bartonella tinctures back in, but they weren’t knocking the symptoms down quickly enough, so I asked my doctor to go back on prescription antibiotics.
I am now treating with both the tinctures and a prescription antibiotic, which I’ll discuss next.
My dosage: About 10 drops of each tincture diluted in cranberry juice and taken on an empty stomach in the morning and at bedtime.
Note: Wildcraft Herbs has a bartonella formula with all of the herbs in one bottle, but I’ve been sourcing the individual tinctures from Woodland Essence until Wildcraft opens back up.
Bactrim – I’m back on a prescription antibiotic for the first time since 2017. I hate taking prescription antibiotics because I know they damage the body but I had to do something to get my symptoms back under control.
I’ve been on bactrim now for about a month, and my symptoms are slowly improving.
I guess this is a lesson learned. If it ain’t broken, don’t fix it!
My dosage: One tablet twice a day with food.
Melatonin – I’ve used melatonin off and on for years to help me fall asleep.
My dosage: 3mg at bedtime.
Medical cannabis – I don’t think I could sleep without medical cannabis now. It’s that integral to my ability to wind down and get some rest at the end of the day.
I covered how I use cannabis in a video, so I won’t repeat that info here.
My dosage: I don’t have a set dosage. I use cannabis in various forms including vaping, edibles, capsules and oil. It just depends on what I can get from my local dispensaries.
SAM-e – I’ve taken SAM-e since 2015, and it still works well for boosting my dopamine levels, which improves my overall mood. I covered how I use SAM-e in this post, so I won’t repeat that information here.
There’s at least one study that shows SAM-e reduces fibromyalgia pain but I’ve personally never noticed that benefit while I taking it.
My dosage: 800mg in the morning on an empty stomach.
Note: SAM-e is more expensive than most of my other supplements. I’ve found Vitacost to have the best pricing. I can get a 30-day supply for around $25-$30.
L-theanine – I use this natural supplement for anxiety, and I know for a fact it’s calming my brain down.
A few years ago, I ran out of l-theanine and decided not to repurchase it because I wasn’t sure if it was helping my anxiety. Within a day or so, I started having these horrific brain zaps, which felt like a lightning bold going off in my head.
I reached out to my doctor for advise, and he advised me to go buy some l-theanine at my local drugstore. (He’d forgotten I was already taking it.) As soon as I read his email, I realized what had happened: I was going through withdrawals from stopping the l-theanine.
I ran out to Walgreens and bought the only l-theanine product they had, took a dose that night and by the next day, the brain zaps were gone.
I’m still not sure if l-theanine actually reduces my anxiety, but I know it helps regulate my neurotransmitters.
My dosage: 200mg in the morning on an empty stomach. L-theanine also is helpful for sleep, according to some sources I’ve read, so you can take it at bedtime, but I have not personally noticed that effect.
Propranolol – Initially, my doctor put me on propranolol for my chronic headaches. It did nothing for those, but it sure did a wonderful job of calming my body down. In the beginning, the change was so noticeable I could tell the moment my body processed the propranolol because I could feel a wave of calm and centeredness.
I’ve remained on propranolol for anxiety, and it’s definitely a workhorse in my protocol. I recently increased my dose due to the stress of getting a divorce.
My dosage: 5mg with breakfast and dinner.
Immune system support
Transfer Factor Multi-Immune – This is a supplement I’ve taken since 2017 to support my immune system as it fights Lyme and other infections. I have no idea if it’s actually doing anything but my doctor wants me to stay on it, so I do.
My dosage: One capsule in the morning on an empty stomach.
ProBoost thymic protein A – I added this supplement when the pandemic started to further support my immune system.
Interesting observation: Lyme specialist Dr. Marty Ross recommends using ProBoost and olive leaf extract to help combat acute viral infections like the common cold. My husband gets at least a couple of colds every year, and for years, I would catch everything he brought home – until I used Dr. Marty’s ProBoost/olive leaf protocol.
I start the protocol at the first sign I might be coming down with something, and I have avoided catching Morgan’s last three colds. I will keep these products in my medicine cabinet for the rest of my life! Thanks, Dr. Marty!
My dosage: One-third of a packet with breakfast.
Hyophen – Overactive bladder is one of my most uncomfortable Lyme/bartonella symptoms. I’ve tried multiple drugs over the years, but hyophen seems to work the best. I wasn’t sure why until I read one of its ingredients is a weak antibiotic. No wonder it helps! It’s keeping the Lyme and bartonella bacteria in check.
I still have bladder irritation, and I still urinate a lot, but it’s not as miserable as it used to be.
My dosage: One tablet with breakfast and dinner.
Note: There is a belief among some Lyme specialists that many cases of interstitial cystitis are caused by untreated Lyme disease.
NP Thyroid – I’ve alternated between NP Thyroid and Armour Thyroid for years. I haven’t experienced a difference in any of my symptoms, but it does keep my thyroid numbers lower than when I’m not taking medication.
My dosage: 30mg on an empty stomach in the morning.
Claritin – My nose and eyes constantly run and itch, and it’s even worse when I eat certain high-histamine foods, so I take Claritin daily to help with histamine intolerance. It doesn’t eliminate my symptoms but it does lessen them.
My dosage: One 24-hour tablet per day.
NasalCrom Nasal Spray – My doctor recently added this to my regime to see if it might help my histamine intolerance. I *think* it might be helping, but it’s really too soon to tell.
My dosage: One spray up each nostril in the evening.
Coffee enemas – I continue to do coffee enemas every other day to purge my liver of toxins. I’ve written about the benefits of coffee enemas here, so I won’t repeat all of that info.
I know coffee enemas aren’t for everyone – you have to be able to get past the ick factor – but if I recovered 100% tomorrow, I would still do my coffee enemas because my body feels cleaner and lighter when I do them.
My dosage: An enema every other day with two cups of S.A. Wilson’s organic enema coffee.
Zofran – I have nausea most days, but I only take zofran with it gets bad.
My dosage: 4mg as needed for nausea.
Elepure magnesium lotion – I apply Elepure to my feet and legs whenever I get that heebie jeebie feeling from restless legs.
I’ve tried other magnesium lotions and oils over the years, but I like Elepure the best because it doesn’t burn or sting, it’s unscented, it’s not sticky and it works!
What I’m no longer using or doing
Infrared sauna – I still love my sauna, but it worsens my headaches, so I cannot use it most days like I used to. 🙁
Cholestyramine, bentonite clay and other binders – It was very important to use these when I was first treating Lyme disease so I could remove the toxins from my body instead of them recirculating and causing inflammation. After a couple of years, I cut back on binders and ultimately stopped them because they no longer felt necessary.
I still use bentonite clay when I feel super nauseous.
Quell pain relief device – I still reach for the Quell when I’m in a flare, but I don’t use it every day.
5-HTP – I stopped taking this when I added an antidepressant to my protocol last year for chronic headaches. My doctor and I didn’t want to take the chance of me developing serotonin syndrome.
Gluten-free diet and dairy-free diet – I followed a gluten- and dairy-free diet for years, and it definitely helped when my fibromyalgia/Lyme pain was at its worst. Being diligent with my food choices plus using probiotics and digestive enzymes have healed my gut enough that I can tolerate most organic gluten and dairy products now.
I still have issues with conventionally-grown wheat. I suspect I’m not reacting to the gluten but to the pesticides on the wheat.
I’m hoping the headaches will improve once I move to Virginia this summer. If not, I plan to try a low-histamine diet because I know certain high-histamine foods intensify my headaches.
Daily Body Restore probiotics and digestive enzymes – I know I should be taking these – especially now that I’m back on prescription antibiotics. I just fell out of the habit and need to get back to using them.
Curcumin – I tried to take this as a natural anti-inflammatory, but my tummy won’t tolerate it long term.
Quercetin – I stopped buying this to save money when I added Claritin to my protocol. I still think it’s a wonderful product for mild histamine issues though.
I’ve decided I’m going to designate a space in my new-to-me home for a daily practice.
Earthing/grounding and sunlight therapy – I still sit in my backyard with my bare feet on the ground and my skin exposed to the sun, but I don’t do it enough to make a real impact on my wellness. This is another of those activities that I plan to reintroduce once I move in a couple of months.
Vital Proteins collagen – My doctor wants me to start using collagen powder every day, hoping it will improve the strength of the ligaments in my neck and other connective tissues throughout my body, which in turn should improve the headaches and neck pain.
My doctors think I may have a connective tissue disorder called Ehlers-Danlos syndrome (EDS) since spontaneous cerebrospinal fluid leaks and chiari malformation are more common in persons with that condition. I’ve put off the genetic testing for EDS because my insurance doesn’t cover it, and there are no effective treatments for it (beyond what I’m already doing).
And frankly, I just don’t want another diagnosis added to my list.
A lot of you will notice I’m taking more prescription drugs now than I ever have in the past. That’s mostly because there are almost no natural options for treating chiari, craniocervical instability and intracranial hypertension.
I know my protocol is A LOT. Most people wouldn’t do all of this, and I know that. I don’t think I even realized how complicated it is until I just spent two afternoons writing it all down.
Because my doctors and I haven’t made any tangible headway with the chronic headaches, I applied for Social Security disability last year. I was denied on the first try and am waiting for a decision at the reconsideration phase.
On the bright side, compared to my last protocol update from 2019, I do have a little more stamina, and my fibromyalgia/Lyme pain is on the lower end of the pain scale most days now.
But obviously, I’m not where I want to be, and I am hoping that’s going to change once I’m living in a more peaceful, relaxed environment. I’ve felt like I’ve been treading water the last few years – like my healing has plateaued – and I mostly blame that on my stressful home life.
But I’m changing that, and hopefully my body will respond positively. We’ll see.
Now it’s your turn: What treatment(s) have helped you the most with fibromyalgia and/or Lyme disease? Share in the comments below!