Last month, for a 90-minute flotation therapy session, I finally got back a Christmas gift certificate. Flotation therapy (technically known as flotation REST–environmental stimulation reduction therapy) was developed by a neuroscientist in the 1950s and involves the flotation of an enclosed water-filled tank. The water is body temperature heated and contains so much Epsom (active component: magnesium sulfate) that it floats without any effort.
Upon researching the benefits of flotation therapy for fibromyalgia and chronic pain I added my gift certificate to my Christmas wish list. In a study conducted in 2012, 81 patients with fibromyalgia reported flotation therapy that “produced substantial temporary reductions in pain, muscle tension, anxiety and tranquility, and significant increases in relaxation, well-being, vitality, and easiness of motion,” the report stated. A large research study called the Fibromyalgia flotation project is underway. “The quality of sleep has also improved significantly.”
I was shown a short video with instructions for before and during my float when I arrived at East Coast Float Spa in West Chester, Pennsylvania, and took a short tour of the facility. I chose East Coast as float rooms rather than float tanks when I was looking into floating installations in my area. (Smaller float tanks and are not ideal for claustrophobic people.)
One of East Coast Float Spa’s three floating quarters.
Each of the three floating rooms on the Eastern Coast has a small dishwasher area and a shower before and after the float. I shrunk into a diminished-lit float pool and started my session after showering. The pool has an area of about 12 inches saturated with 1000-pound Epsom salts and has a king-size bed.
I must confess that my anxiety kicked in a few moments during my floatsession. The region of the swimming pool is dark but a little black light that reflects the water. No sound or music. There is no tone. My breathing was all I could hear, as my ears sank underneath the mud. If you’re susceptible to the game, like I am, to be in silence for 90 minutes only with your own thoughts, it can be very upsetting, but the feelings of anxiety flowed down and flowed down and eventually faded away. I thought at some point, “This must be how it feels when you’re in the womb of your mother, all you can hear is beating her heart.”
It didn’t take much energy to float, and I wasn’t in agony for the first time in so long, long time. Let me say this again: I haven’t been in pain! My body was suspended as if no gravity, but only the hot water, silence, quiet could be enjoyed. I wondered why I’ve been waiting for that for so long.
Then a bright overhead light clicked to signal that my session had finished. (The only drawback was that darn glare! They were supposed to add red or gold light bulbs so they’re not that jarring.)
When I got up out of the swimming pool, my body felt heavy when gravity caught, and the pain came back–not as bad, but always with chronic pain to remember my life.
As an additional service, East Coast also offers a zero-grade oxygen bar and massage chairs. I tried both of them, but neither was a big fan. For future visits, I would definitely miss them.
But I said, “future visits.” Yes, future visits would definitely be made, because I had less pain and less tension on the first float. I still feel the benefits a few days later, when I write this. In my next session, I can’t wait! In years to come, I have the impression that my hubby would give me flotation gift certificates.
You probably are asking right now, “What’s the heck of myofascial release?” Yeah, it’s like massage, but it doesn’t really feel like massage. Myofascial release (MFR) is a bodywork that physical therapist John Barnes has created. The muscle tissue and fascia have steady, gentle pressure to break up adhesions.
At least two European studies (referred to here and here) have found MFR to be effective in reducing fibromyalgia pain, according to Fibromyalgia expert and father-in-law Dr. Ginevra Liptan. MFR is also useful in the treatment of various types of back pain, urgency / incontinence of the bladder, migraines, arthritis, and other conditions.
As I read Liptan’s novel, “The Fibro Manual” I studied the MFR for the first-time last year. She’s an enormous fan of MFR that she uses with the help of her own suffering.
I put MFR on my to-do list of mental wellbeing but did not try it in a hurry because massage therapy these times is simply torture. I used to like massage, but it’s too painful with a gentle massage therapist since I develop fibro and Lyme.
But I’ve been reading this article on how Lyme bacteria love hiding in fascia films. I started putting 2 + 2 in my mind together. When MFR breaks up and releases fascia, then it may help pull the bacteria from their hiding places, so that antibiotics and herbs that I use can kill them.
I planned my first full body MFR session at the end of June with Christine. I was concerned that it would be uncomfortable and I would end up in a blow afterwards because of my most recent massage experiences. But only when Christine pulled my arms did, I feel discomfort during my session. Subsequently, it only felt essentially that she squeezed and held my body in different areas. I wondered, as she did, how it would help anything in the world. In yet another futile operation, I thought I had just wasted more capital.
Yet I walked a little better as I left Christine’s office that day. The straightening of my breasts. I felt looser in my neck. The pressure I always have was definitely less in my legs. I felt… great. I just did.
I went home to wait for the beginning of the flare. With preparation, I even took some ibuprofen, but it never came. I had less discomfort overall for the next couple of days. I began waiting for my next MFR session in three weeks’ time.
The unforeseen occurred then. My lower back began to ache, and I was sitting at my desk on 3 July. As the day progressed, I found that my lower back was pinched, causing sciatic pain to my left leg. I made a few strands of sciatica, hoping to fix the problem, but I’d basically just go to bed or sofa by the following day. I couldn’t go straight sometimes. I crawled a few times practically up the stairs, because it was too difficult to ascend normally. I’m used to fibromyalgia and Lyme pain every day, but pain has been completely new. Over the days, I begged for my’ usual’ fibro / Lyme pain to come back in place of the agony that I felt.
I’ve had a few chiropractic adjustments, but they’ve been really effective. I’ve seen my general practitioner prescribing prednisone and muscle relaxers for a few days. The drugs helped, but when I stopped taking it, the pain came back.
One week after my symptoms began, I urgently called Christine to see whether she could help. She worked for more than an hour, pushing her hands through my neck, hip and buttocks, squeezing them and gripping them. But it hurt well. It hurt. I knew without any doubt that she had magic hands as I stood from her massage table. It was nowhere as severe as it was–but enough I called Christine to ask if she would work again her magic. I was relief for four days and then the pain returned.
I am able for Christine and MFR to sit at my desk here and write this article. I’m a convert, a real faithful man. He’s been right Dr. Liptan… again. I should study MFR if you had fibromyalgia or other conditions that cause chronic muscle pain. Surely for me, it was a blessing in recent weeks.
To find a practitioner in the area…
Please visit the page of John Barnes to find a doctor on his website for people interested in myofascial releases. This will be the best place for a local practitioner to search. There are many massage therapists from what I have heard who say myofascial releases but a real MFR practicing practitioner was specifically trained in the technology of John Barnes. Going to a massage therapist who has studied several MFRs at a massage school is not the same and will probably not achieve the same results.
Exercise can be too much for people with autoimmune, Lyme and other chronic diseases, fibromyalgia and fatigue disorders, though. Out of my own practice, I know that. You can see that I have thyroiditis of Hashimoto, celiac disease and fibromyalgia and exercise can be a dangerous thing for people such as myself. It can make the body worse and push it to a pain flare instantly.
More than I can count, this has happened to me. I would practice, I would feel great, I would be exercising a little harder, and then I would suddenly lose my energy, feel fully wiped out, and even develop a fever sometimes. I’d feel like it was on fire and my body would be sad. It would be a struggle even to climb the stairs. All because I ran the treadmill for another 5 minutes when I felt good. Yet, because it was good for us, my doctors continued telling me to practice.
They’re right technically. Evidence has consistently shown that exercise is particularly helpful to people with autoimmune, fibromyalgia, Lyme disease and other chronic pain or fatigue disorders. Some of the demonstrated benefits include:
Increased or restored joint movement, even for persons with chronic arthritis such as rheumatoid arthritis
Enhanced muscular strength and resilience, even for persons with deterioration of their muscles or joints
General reduction in overall symptoms
So why does it leave us in so much misery for something good? And how do people fight the benefits of exercise without crashing with chronic pain?
Autoimmune Strong is an online training platform for people who are struggling with chronic pain. It was developed by Andrea Wool, who has fibromyalgia, thyroiditis, and celiac disease of Hashimoto.
Evidence has also shown that physical and mental stress can intensify the symptoms and other symptoms of an autoimmune disorder. Exercise creates high levels of cortisol, which stresses the body and may lead to an attack or inflammation of pain in the immune system. That is why (simply put) we feel awful following practice. We’ve got a flaring up, we rest and rejuvenate, and if eventually we get good back again, we go back to exercise and it all starts again. I call this the “exercise to flaring up” process.
But not all practice increases stress and cortisol. The fitness industry teaches us that training must be difficult. We have to be easy, quicker, sweat more, pushing harder, lifting heavier… and we do so at the exercise room. We don’t know we’ve done it right if we don’t work hard. Any pain, any benefit, right? No pain.
FUCH! Let’s change the workout topic. We have to do a lot of work, but not as I have just described. By breaking yourself down, you can become powerful. Exercise will, I believe, be safe and body-feeding.
Let’s break the flare-up cycle exercise. Here are my strong
autoimmune steps to health recovery:
We also fail in the gym because we want to lose weight. I do not think the real health problem is excess weight, though. Excess weight is just another symptom, an out of control symptom of a body and a body in pain really is out of balance. I also encourage you to make your body healthy instead of weight loss a priority. It will be much more comfortable, I promise and the weight will be a happy side effect as the body gets into better balance.
Look at it as a way to make your body healthy rather than as a punishment for losing weight. Exercise can improve your immune system, make you sleep better, increase heart function, lower body pain and ache and increase energy and emotion for life: this has a long list of great body effects. Often, autoimmune and fibromyalgia disorders have even reduced their severity! And the right workout will improve and expand the body’s capacity to do life activities such as playing with your children and grandchildren, walking on store islands or crossing snow dead in the winter.
We were taught that it is best for us to lose weight in cardio (running, walking, elliptical machinery) etc. In addition, it raises our cortisol and inflammation and can cause an epidemic of symptoms. Therefore, you could be more effective with 20 minutes of proper strength and flexibility training, rather than wasting 45 minutes on the elliptical.
Start with the very basics of reinforcing moves and build on
them over time. When you start gently and gradually increase over the course of
time, your body can adapt to greater intensity.
The best way to take care of your body is not to lie all day
in the bed. Nights when you don’t exercise, gentle stretching, moisture
rolling, a walk or a quick plie shot around your house, can make you feel
better and get back faster.
It will help support your body when it is under stress, if you eat unprocessed food, sleep well, practice the art of relaxation and deep breathing and make time in your life for some fun and laughter.
Don’t think that you don’t do enough or work hard enough. Celebrate your successes, set realistic goals and try to prevent negative self-talk. Much like your own best friend, treat yourself.
So, perhaps you’ve read this list, and you know my tips exactly. Just go for it! Go for it! Congratulations are going to be your body. However, you don’t know where you can begin, these tips are perhaps overwhelming. I encourage you to look out for Autoimmune Strong, a fibromyalgia-specific, Lyme–chronic and related workout plan. The Autoimmune Strong features online fitness videos to help you get to learn what to eat and what to avoid in order to lose weight and feel great. This involves direct strength and flexibility training and physical needs, and an auto-immune Strong Nutrition Guide.
Fibromyalgia and the Lyme communities are a dreadful subject
(literally!). This is why I have for such a long time stopped writing about it.
I know many of you will agree with me when I say I’m sick of listening doctors
and scientists and if I only practice, I will feel better. Yet I know that they
are probably right based on current research.
The thing is when the necessities of showering and preparing meals come up every day, it is just funny to take a power walk around the neighborhood. 10 minutes of yoga are adequate to bring the majority of us into a flare of days.
Strong Autoimmune is an online fitness program developed
particularly for people with chronic diseases such as fibromyalgia, autoimmune
disorders and Lyme disease.
I WAND to work out like someone who used to do 5 kg, but if
I did it in the past, my pain and exhaustion only intensified so much. I found
very rapidly that standard practice plans just don’t work for me (there is a
name for this in reality: post exercises malaise and it’s a real thing despite
the fact that most physicians never heard of it). For my body, it’s too tiring
and exhausting.
I have required over the years a fibromyalgia training programmed,
and I’ve now found a fibromyalgia-like programmed! After fibromyalgia,
Hashimoto’s thyroiditis and celiac disease, Andrea Wool developed Autoimmune
Strong. after her second son was born. Like many of us, she could not find
solutions to her problems in the conventional medicine model and wanted to see
whether changes in lifestyle could improve her symptoms but only added another
challenge: most fitness programs are designed for (semi-)healthy people and do
not tackle the physical limitations of living with a chronic disease. She will
crash with normal exercise.
Andrea eventually decided to develop her own training
program for the recovery of her body and now shares it with others. I watched
Autoimmune Strong’s first couple of videos. I decided that I would share it
with my readers instantly. Andrea’s method is so slow and gentle that I think
her system could benefit those of us (even myself) who want to start a workout,
but do not have the strength to do conventional exercises.
So, I address a discussion with Andrea today where we
explore her health challenges, how these have led to the formation of
Autoimmune Strong and how its initiative, in the fibromyalgia and Lyme groups,
addresses the need for soft movements. I hope our interview will please you!
They have encountered a variety of health problems,
including fibromyalgia, thyroiditis of Hashimoto and celiac disease. Will you
share your chronic disease story?
AF is an online fitness program developed specifically for
people who have chronic pain. autoimmune strength training. It was developed by
Andrea Wool with fibromyalgia, thyroiditis and celiac Hashimoto.
Creator of Autoimmune
Strong is Andrea Wool
Andrea Wool: I was very sick almost 6 years ago. I just bare
my second son, and I just knew there was something about my body that was
really wrong. Tired of mental fatigue, I felt drained. I quickly gained weight
and at all times I had regular, burning and extreme pain in my body.
I had been with a newborn and a 3-year-old on maternity
leave at home and I could not take care of my babies, home or myself entirely.
I couldn’t. I wanted my mom and my husband to provide continuous support just
every day. It would be difficult, exhausting, to play literally daily things
like taking my son up the floor, or carrying my sister up the steps, or to go
to a grocery store. In unbelievable pain all over, I spent my days in tears. There
was an extreme and debilitating fatigue.
Most of them assured me that I was okay. I’ve seen many doctors. But I was NOT all right, clearly. I had to leave my job so sick. It all helped me feel stronger, I was desperate for anything. I began looking at things that I could control–what I was eating and how I was moving my body. I have developed a food-based healing procedure over time, which I felt might function. I decided to avoid gluten, sugar, milk, alcohol and caffeine. I decided to avoid processed food and only buy organic food and meat.
I knew that movement had to be also part of healing after
being an athlete in my life. I hired a personal trainer, but it was really
hard, so I started moving again. I was too tired to do anything I did before,
and the exercises we did caused a massive burst in my body. I’d feel great for
a week and then drained and depressed for two weeks.
I began to feel better after a few months of this
self-designed regimen and realized I’m on the right track. Yet I didn’t return
to’ natural’ anyway, and I had to learn how. What I lost, I wanted to know. But
I decided to go back to school. I made a big decision. I became a nutritionist
and a certified personal trainer to learn more and to improve my healing
skills.
Two years later, Hashimotos [Thyroiditis], celiac and
Fibromyalgia finally diagnosed me, which continues to amaze my physicians
throughout my personal healing journey with only food and movement. I hope now
that others will also be inspired to create their own healing path and not be
pained forever.
Feeling During Days
In reality, these days I feel fantastic. I can’t even
believe that I’m the same guy, looking back on this story. The recovery was
sluggish and not yet completed. But now I can do things that I didn’t believe
were possible 6 years later. I could go back to the active lifestyle I loved.
I’m playing, I do yoga and I have just begun to learn how to lift. I’m 185
pounds deadlift! I’m not only healthy enough to work, I’m willing to run my own
business.
But I can keep up with my boys most importantly. We like to
run around and I’m able to ride with them completely. I go up with them, I can
put them on my back, I play games, I can fight them and I can handle them
rough-house, and my body can handle them. We don’t recall a “sick” mother.
Just as I am now, they know me. And I’m forever thankful for that.
I think we’re all told that we should exercise under
fibromyalgia and similar conditions, but it’s so hard–especially at first,
because exercise tends to worsen our symptoms. How have you begun to start and
remain motivated?
Yes, with fibromyalgia I have found that exercise is a
double-edged sword, as well as other chronic pain problems. It is important to
move, but too much motion will cause the worst flare. It took me a long time to
work out the balance. I hired a personal trainer like I mentioned above, but
she had no understanding of my body. My results were that the majority of
personal trainers and fitness practitioners want you to move your body so that
you can improve yourself faster. “No pain, no benefit,” okay? Okay, I
did not work for me, I tried that. This left me sicker, instead. As a former
athlete it was difficult to wrap my brain around the idea I needed to slide
down. Pacing for people with a fibromyalgia is the most important part of a
fitness regime. I assume that what works best is gradual, steady and consistent
over time.
I’m inspired because it makes me feel better now that I work
out in the right way for my body! I notice that exercise can help instead of hurting
if I sense a flare comes in. Exercise is my medicine for me now. I don’t do it
to be “skinny,” or to focus on my last meal. It is something I am
doing to help my own process of healing.
Why is remaining
physically active to those of us with fibromyalgia and the like?
Exercise can help us manage our symptoms and inflammations
when done correctly. Chronic conditions of pain are caused by inflammation, and
exercise will help reduce inflammation if done correctly. In fact, the right
workouts will allow our bodies to respond to a pain response that can help us
get through our daily work. The companies must learn to be negative.
What is High
Autoimmune and what have brought you to it?
Autoimmune Strong is an online fitness program specifically
designed for people with chronic illnesses, such as fibromyalgia and Lyme
disease.
Because I was so angry, I created it because nobody in
fitness understood what my body was like. I’ve been trying for a lot of time to
find somebody who could help me learn until I did an accident and couldn’t find
anybody who knew what I was doing. I built for myself this software, and it was
fun. Then I decided to use my personal training clients individually and they
felt good, too.
On the basis of the great results, I was inspired to create a curriculum that was simple to do at home, open to everyone, which helped people like me become stronger and better. Strong was born autoimmune!
How can Autoimmune Strong vary from other programs on the
market and what can participants expect for those interested in starting an
internship program?
Autoimmune Strong is the only fitness training program
designed exclusively to people with chronic pain. Autoimmune Strong’s most
important feature is the nature of the programmed. The first step is to target
specific postural muscles without large movements. Autoimmune Strong Such
exercises are successful in strengthening the body, but do not cause stress and
inflammation.
Additionally, the program’s pace distinguishes it. Most training programs drive you to the limit. Autoimmune Strong begins very slowly so you can better adjust your body to movements and develop without any flare. And finally, Autoimmune Strong has a community component, where people in a private Facebook group can chat with each other to share our goals, our achievements, and our fight. Chronic pain is an invisible illness and understanding what we live with is difficult for the people in our environment. The better we’ll be able to support each other!
When my body changed, I was an active person. I was a knife, someone who plunged me through my long days at work. I’ve been a long-haul racer, a rodent trainer, skier. I was someone who loved going out, traveling, walking and camping, party life.
All changed when it reached fibromyalgia. I came to someone who struggled to get off the couch from this person who lived a full life. I have been dealing with increasing fatigue and exhaustion and everyday life has been a struggle. I looked normal on the surface, as if nothing was wrong. Yet inside, it’s an understatement to say I’ve been fighting.
I tried to return to my old life after my diagnosis. Time in the gym included. I figured my body was perfect with exercise. Medical studies have shown that exercise can actually decrease fibromyalgia symptoms, but these findings also demonstrate the significance of monitoring exercise intensity to produce positive results.
I’ve had that first-hand experience. All the exercise I tried to do was not to make me feel good, modeled following my pre-diagnosis exercise routine. This made me feel worse, instead.
I realized that I had something new to try to improve my career. At the time, self-myofascial release, also called foam rolling, was the hot new fitness trend in some news. I had previously found that massage was good at reducing my pain, but I couldn’t do it all the time, because it was too costly, too long and too scheduled, and was often so painful that I needed a lot of time to get better. The rolling of foam seemed like a good solution.
I fell in love when I tried it. Okay, love-hate, I’m going
to tell you a little bit.
Fascia is a tissue that is connective to our muscles. The fasci is like the rubber that covers live wires when you picture an electric wire. Fascia covers our muscles in a similar way to keep them safe and secure.
But, as we get older, fascia can get tight and stiff and break into the muscles and working properly can be difficult. It induces body pain, and this extra pain can be painful for people with fibromyalgia. Foam rolling loosens the fascia, reduces pressure and allows the muscles to function properly.
In a sweater system in our body, our muscles work together. That muscle is linked to a specific muscle. When we get older, some muscles get too strong while others get loose. So physical habits hang on to our body. It causes muscle imbalances that cause body pain. In a body with fibromyalgia, this pain is magnified.
Here we have an example of a typical muscle disequilibrium: we are very much sitting on our couches, computers, cars and so on. The hip muscles are compressed and tight as we are seated, and the gluteal muscles weaken. This relationship eventually loses its structural stability. The tight hips cannot be balanced with poor glutes, and low back pain can result, as the back muscles attempt to overcompensate the weaker gluteal muscles.
Foam rolling will relax the tight muscles to return to equilibrium in the muscles. Here you must remember that equilibrium cannot be achieved until the weak muscle also has to be strengthened; however, foam rolling in the tight muscle is a good starting point.
In fact, we can reduce the pressure and stress on our joints by lightening these tight muscles, which can reduce our joint pain.
Individuals with fibromyalgia often have many muscle nodes in their corps, which can be a significant cause of pain. Knots can respond to pressure and release after pressure has been exerted. So functions foam rolling!
Yes! The rolling of foam can be very useful. Those with fibromyalgia can function more quickly if they relieve the pressure from tight fascia, muscles or muscle nodes. Stiffness, joint pain, muscle aches and physical discomfort are decreased.
However, before you start a foam-rolling procedure if you have fibromyalgia a couple of things really important to know.
It is not easy to say: Foam rolling, especially during the first few days, can be extremely painful. If you have tight fascia, or a lot of muscle knots, it can be difficult to roll foam, but at last the pain will go down, so you can roll foam (relative) quickly.
The drinking water, the air we breathe and the food we eat come from many sources. Such contaminants are often difficult for our bodies to remove. Foam rolling can help with this process by pushing the fascia and the muscle tissue with long-lasting toxins.
This can overwhelm the machine at the beginning, however. It
is important to enter the foam rolling process slowly and gently.
Within our physical body we store many of our emotions. Individuals with fibro sometimes feel an emotional surge as they continue to sprout when their accumulated pain starts to break free. Once, this moves like poisons, but don’t be surprised if you cry during or after your foam rolling. It’s going to feel good to express these feelings.
The brief reply is yes. If I did not give you complete information on the dangers and advantages of foam rolling, I’d like to tell you something else, but I’d forget that. There are significant incentives, but there is a risk of fiber flare especially at beginning of the process, because of the intense nature of the foam rolling.
Simply follow this guidance: Feel your body. The secret to foam rolling, without flare. If the pain is great, just start rolling in a small amount of foam–from 5-30 seconds–and start one part of your body at a time.
In between, take rest days. Every day don’t foam roll. If
you are tired, ensure you have time before you recover.
Get your tolerance up slowly. Don’t rush! This takes time to change.
All right, I’m interested in rolling the foam, but where do
I begin?
You only need a roller of foam! There are numerous foam rolls with different densities, bumps and other features, so look for one that has a corresponding intensity level. (If you’re very sensitive and quickly flare, start with the softer one.
You will find tons of how-to videos which will be very good at teaching actual movements if you roll Google foam. Begin with the large muscles, like the quads, calves and hamstrings. You can even roll your feet’s bottoms with a golf or tennis ball!
It’s a muscle knot if you sense a position that is more painful than others. I suggest keeping the foam rolling pressure on knots for 30 seconds (or until your body is intensified; starting with only 5 seconds may be required). This begins the process of removing the knot and calming the body pain.
As someone who deals with fibromyalgia, however, before I begin a spraying process, I advise you to consider some issues. As I said, foam rolling can trigger a flame if it is not properly performed. It may be difficult to begin for people with limited energy, because the normal moisture routine requires the ability to get up and down from the floor and the strength of the heart and neck. Foam is not as successful rolling alone without more strength training.
If you are worried about trying to roll foam alone, I want to share with you the seven-day free autoimmune trial, and you want some tips on how to do this safely and without a flare. Autoimmune Strong is an online fitness program for chronic pain patients. It teaches all you need to learn about creating strength and energy without triggering a flare. There is a whole section about the foam rolling to reduce pain and how to make changes if it is too painful.
Autoimmune Strong helps you to gain the core strength and arm strength to roll effectively. This is done in a way that helps you reduce pain and gain energy without starting an explosion.
In the hope of finding something that works better and provides relief, I constantly tweak my treatment protocol for fibromyalgia and chronic Lyme. I just added a couple of new things I found helpful and wanted to share, so that goes here… Three new (for me) therapies that improve my fibromyalgia and persistent symptoms of Lyme Fed up with exhaustion.
As a cure for discomfort, I have started adding CBD oil to my lotion. I recently stopped long-term antibiotics for Lyme chronic because after taking them for more than one year, I only saw minimum improvements in my health. My symptoms are still stable until now except when my shin pain returns, due to Bartonella, a popular Lyme coinfection.
Shiny and horrible Bartonella is shin pain! It feels like it’s dulling within the bone, and I haven’t really found a good cure for it–up to now.
For more than a year, I’ve been using body hemp lotions. I find it helpful to relieve mild anxiety and discomfort, but it does not suit the intense light I experience. I had a small bottle of CBD oil I did not use, but I mixed my hemp lotion with a half dropper of CBD oil in one night’s desperation, rubberized it and slatted it over my boring shins, feet and thighs. And what do you guess? It was running! The pain was numbed up to a tolerable level by the CBD oil within a few minutes.
Over the last couple of weeks, I have continued to use the lotion / oil mix, and it has always been nice. Unfortunately, there is no permanent pain relief— it lasts about an hour— but even a temporary pain reduction is welcome.
Up until now I have been using cannabis-based CBD oil from my local pharmacy since that’s what I’ve had in store, but I’ll check hemp-based CBD (whom you can shop online).
A few weeks ago, I watched and was inspired to try a documentary on earthing. Several experiments have shown that earth can reduce stress, pain, and inflammation and sleep because the body can bind to the surface electrons of the Earth.
A couple of days a week I take a beach chair out of my yard and sit down in the sun for about 15-20 minutes on the lawn. It serves two purposes: I get the advantages of soil, and sunlight enhances the normal vitamin D cycle of my body.
Sure, I know dermatologists will tell me that I’m growing my skin cancer risk, but I’m wary of not overdoing it. I wear sunscreen, I’m not healthy, I want to stop wrinkles, but I keep my arms and legs blind to sun. I have no facial skin.
I cannot assume that earth and sunshine therapy have dramatically lowered my symptoms–I don’t believe I have been spending enough time out for maximum benefit-but on the days that I spend that few minutes outside, I find that I have more stamina and mental clarity.
And I have a bit of a tan on my ghostly white legs for the first time in my life. I plan to purchase a piece of landing to see if I could feel better.
When my new Lyme doctor suggested that my treatment protocol should include coffee enemas twice or three times a week, I am not happy. Throughout my life I never had an enema, so it really felt awesome and a little terrified and only… yucky! But if you’re in pain every day and it doesn’t help much, you come to a point when you’re going to try most.
For about three weeks now, I have been making coffee enemas every other day. I would tell coffee enemas are already a game change for me, and I’m not saying that lightly. I will shortly make a complete article on coffee enemas, but I will suggest that for now they’re perfect for increased energy, clarity of mind and also for pain relief. I am grateful that I have overcome my shame and repulsion and have received advice from my doctor because coffee enemas are the best therapies I have ever used for Fibro / Lyme.
This blog based on “10 excuses to throw away your doctor.” The editor permits it to be republished here. I have used the word “he” in all of this article to encourage reading because I know that there are both male and female doctors.
Doesn’t the physician listen? Is he disobeying? Will his treatment plan not work? Then it may be time for your doctor to shoot!
Visit any support group for fibromyalgia online, and you will probably find lots of stories about physician horrors. I have read stories of doctors screaming at patients and saying that their problems are in their minds and worse, calling them fat and lazy.
My comment is always the same when I see these articles:
find a new doctor!
Yeah, I know it isn’t so easy sometimes. Some people are not able to change doctors, but most of us do have a choice of a doctor in which we look for our medical care.
And yet, I see patients that can be deceived by so-called doctors over and over again. Why are we allowing this to happen? Doctors don’t get a pass on basic human decency just because their medical degrees are prestigious and they make a lot of money.
I think it’s time we started to handle our doctors as we do other providers of customer service. We offer a service to them, right? There are nine cases in which the fire of your doctor and a new one is perfectly acceptable.
Four fibromyalgia prescription drugs have been licensed by the U.S. Food and Drug administration. The largest online medical data collection is PubMed, with over 9,000 fibro-related studies mentioned. Given that fibromyalgia is no doubt a real condition, but surprisingly physicians still don’t believe in it.
If you ever find a doctor that believes fibro doesn’t exist, or something like it (i.e. fibromyalgia isn’t a real diagnosis, fibromyalgia is a waste basket diagnosis, etc.), the RUN will take you out the examination room and don’t look back as quickly as your tired legs!
When you operate with a doctor who doesn’t believe in fibromyalgia, you will waste your time. He won’t treat what he doesn’t even remember correctly, after all.
Research has shown that fibromyalgia is pain that comes from the brain, but that is not the sense of most doctors when you hear, “It is all in the mind.” You are hypochondriac. You are hypochondriac. You make it up. You make it up. You just reach for a tablet. Blah and Blah,
I stumbled too often into the “it’s all in your head,” when I was turning from doctor to doctor, trying to get treated. Most of the doctors did not speak the words literally, but they repeatedly attempted to diagnose me with depression and prescribe an antidepressant.
Fibromyalgia is a mysterious disease that’s difficult to treat, but that’s not an excuse to give up as a patient. If he does not do his work by trying to solve the pain, tiredness and other symptoms, then find a doctor who will!
I believe patients need to play an active role in their healthcare by keeping them up-to-date with the latest science and treatments. Unfortunately, many physicians do not like medical students from Dr. Google. When patients undertake research trials or ask about certain treatments, they become irritated or snappy.
Why they behave like that, I’m not sure. Perhaps they get worse because they have been in medical school for eight years and have learned less than we do about fibromyalgia. Perhaps they are freak controls and intimidated, because they fear we are calling their knowledge into question.
Regardless of why, fibromyalgia is a very challenging task. It doesn’t work for all of us so you need a doctor who can discuss various treatment options and try them out. It might be time to consider closing the door to that philosopher / patient partnership if your doctor closes you when you make suggestions about your treatment.
Her employer ordered my former nurse practice colleague to limit all patient rates to 12 minutes. Setting tight time limits on patients, such as that, ensures almost that you will constantly be multitasking and rushing to get to the next patient (that is, looking on your computer screen or tablet during your talk).
We certainly have all encountered circumstances where we still have concerns when our physicians are leaving the door, but if it happens every time you see your physician, perhaps you should lighten up your workload by being one less patient he should see.
This can happen in many ways. Perhaps he’s screaming or laughing at you. Perhaps he is teasing you for taking pain killers. Perhaps he will that the symptoms (i.e. “oh, you just get older,” “I hurt all the time,” etc.). It’s incorrect, regardless of the form it takes! Don’t let the very one who is supposed to help you be ignored or abused!
“You don’t have fibro’s if…” variations too many to be mentioned, but some are common: if you lost some weight, then you wouldn’t have fibro.
When you exercised, you wouldn’t have fibro.
If you were just standing up and moving around, you would not have fibro.
Indeed, studies show that exercise is useful in treating the symptoms of fibromyalgia. Yes, when we are closer to our optimal weight, many of us feel better. Sure, being involved is healthy.
But no one studies say that fibromyalgia is due to obese, weak or unwieldy workouts. Fibromyalgia is NOT the cure, nor is diet any. It’s devices–not therapies! Your physician knows this and is unwise to imply.
Once I got a doctor to tell me, “Don’t go the wrong
way, but you have to stop thinking about your pain so much.
” Yeah, doctor. It’s going to vanish if I only stop thinking about my discomfort! Wow, you cured me! Wow, you cured me!
I’m not a doctor’s patient anymore because, evidently, he doesn’t appreciate the chronic pain patient’s daily life. (Insert eye roll here) I don’t know why some clinicians are trying to overcome our symptoms. Maybe their normal methods–prescription drugs and surgery–cannot cure us.
And, irrespective of why you have to start thinking about replacing the person if a doctor’s recommendation is to “stop thinking about it!”
Look, I know that in nearly everybody the big “C”
hits fear. But at least, cancer has a meaning. I don’t underestimate how bad it
is but. As daunting as this sounds, you get better or you die and you will know
the results very quickly in most situations.
You suffer from fibromyalgia for years and years without a view finish. Perhaps tomorrow will be an achievement in research, or perhaps it will be 100 years from now, if we are all gone for a long time. Nobody knows when and if the suffering is going to stop?
Another way to invalidate us as a patient is by linking fibromyalgia to cancer and this is simply wrong!
It is quite easy to attribute any new symptom to “just fibro” if you have fibromyalgia for some time. But what if such heart palpitations are a sign of a more serious problem? What if that hip pain is osteoarthritis and the right medication will help? What if you do not have Fibromyalgia but an undiagnosed thyroid disease caused most of your tiredness?
Do not encourage your doctor (or you), as a consequence of doing so can lead to unnecessary pain, and tragic results, to blame any new symptom for “just fibro.” You need a doctor who investigates more closely and tries to find the factors that underlie the symptoms. If your doctor doesn’t, it might be time to dig into the online provider site of your health insurance company to find a new doctor!
The doctor may have checked Lyme disease, a bacterial infection often spread by ticks, before you are diagnosed with fibromyalgia. When you received a negative result, he or she probably removed the possible causes of your symptoms from their mental list and went on to exclude other conditions.
But the standard testing on Lyme disease is only 50-60% effective, which many doctors do not know. This means which even if you have been checking it negatively, you can still have Lyme!
Around 18 months ago, when I found out that I had Lyme, I learned that lesson firsthand. Fibromyalgia was diagnosed in 2014. My rheumatologist also dismissed my symptoms, including Lyme, as standard culprits. Personally, I have been checked on Lyme by LabCorp at least twice and my results have been negative at both times.
I learned about the high rate of false negatives in Lyme testing two years after my fiber diagnosis. I always had a dull feeling, there was something missing from my doctors. The typical fibromyalgia treatments have not enhanced my symptoms and I have been desperate to relieve the constant pain, fatigue and other symptoms I experience daily.
I had a history of tick bites, when I was born in rural Virginia, so it made sense for me to have contracted Lyme. I decided to test iGenex even better than the tests that LabCorp, Quest and similar conventional labs have.
I have Lyme from the iGenex study. Since then, I have learned that my story is popular among Lyme people. I missed the count of people who told me fibromyalgia was treated, and then they were diagnosed with Lyme. I assume that thousands-perhaps even millions-of fibro patients all over the world are Lyme based on my own research, but I don’t know that.
This is unfortunate if you think Lyme is safe. Yeah, it’s incredibly hard to treat, but certain people get back and heal. Recovery tales in the fibro world are, however, extremely rare.
I am one of my missions to inform the fibro community about the connection between fibromyalgia and Lyme after my Lyme Diagnosis. Below, I will share some of Lyme’s common misconceptions and useful information about how to check and assess properly.
The standard laboratories only conduct 50-60 percent research, as stated above. The main reason is because the standard test does not check the existence of Lyme bacteria. Instead, the body is looking for antibodies that develop when Lyme bacteria are detected.
Most Lyme cases are overlooked as it may take weeks for these anti-corps to develop, but if you were checked too early, the test results will be negative. (Antibodies have never been produced by some men, because they are not working properly.)
Often, those whose Lyme is exposed for long periods fail the standard tests. As the Lyme bacteria enter the body, the body stops producing antibodies to the bacteria. This suppresses the immune system. If you were exposed to Lyme years ago, the chances of a standard test being done are very low.
I’ve had the standard Lyme test at least half a dozen times in LabCorp at this point, and my Lyme’s diagnosis is always negative even though my iGenex test and live blood testing have verified my diagnosis.
About 30% of Lyme patients recall a bite of the tick. Smaller ticks than a cotton seed’s size. There is also some evidence of Lyme transmittances through insects such as mosquitos, bite flies, sand flowers, and other. There is also some evidence that Lyme may also be transmitted by insects.
The US Centers for the Prevention of Diseases deal with ticks to the skin for 36-48 hours to spread Lyme, but science suggests that transmission will happen much sooner.
In all cases, Lyme is present in the U.S. If a doctor says, “We don’t have Lyme implanted in here,” it’s just a complete error!
In some jurisdictions, Lyme is more popular than in others. The north-east and central Atlantic area (from Maine to Virginia), the central North States and the western coast (especially northern California) are among the endemic regions.
Arbitrary borders including municipal boundaries are not known by ticks. There are also ticks in your area if you have ducks, deer’s, mice and any other kind of wildlife there.
For contract Lyme, you don’t have to be an outdoor guy. Lyme also lives in relatively safe areas, such as industrial parks and backyards.
Not all contractors cultivate Lyme rash for bullseye. Estimates vary according to the report, but less than half patients have a respectable Bullseye rash on average.
In the early stages of Lyme flu-like symptoms are normal, but in some cases, asymptomatic.
The symptoms become much more complex and diverse with Lyme holding in the body. Extreme fatuousness, joint pain, muscle pain, cognitive impairment, insanity, particularly in the limbs, depression, digestive problems and neurologic issues (tremors, paralysis of the bell etc.) and changes in the vision and hearing are the most frequent symptoms of Chronic Lyme infection.
Sound familiar with these symptoms? These are also symptomatic of fibromyalgia because many of them are.
Reading a Lyme symptom list, it is easy to understand the possible confusion between Lyme and fibromyalgia. The signs are so similar!
Lyme is actually known as the “true imitator,” because fibromyalgia, chronic fatigue syndrome, multiple sclerosis, parkson’s, dementia, ALS and other disorders are often misdiagnosed.
A perfect way to assess the risk is to complete Dr. Richard
Horowitz’s Lyme questionnaire if you are of the opinion that you may have been
exposed to Lyme.
Dr. Horowitz, one of the most prominent Lyme specialists in the United States, said in his latest presentation: “The true imitator is, of course, Lyme. As you know, it is not persistent tiredness syndrome or fibromyalgia, if you have good or bad days when symptoms and joints come and go, the muscle and nerve pain–your tingling, your excitement, your burning, your slicing sensations–and your body moves… [that] is what is standing out in Lyme disease.
When caught early, Lyme is normally treated with antibiotics for two to four weeks. Nevertheless, Lyme can evolve into a deteriorating chronic condition that is difficult to treat if left untreated.
More difficult Lyme diagnosis is being co-infected. If a tick bites, it does not only pass on Lyme, but also other pathogens. Bartonella, babesia and mycoplasma are the most severe. Co-infections can be just as difficult to treat–if not more difficult–than Lyme.
I had a note I had a few weeks ago from a reader that I am writing much about pain relief but little about tiredness reduction. Well, there is one reason for this: pain management seems to always offer far more options than tiredness.
There are 14 proven ways in which to reduce the fatigue of fibromyalgia:
You knew it was on the list, yeah, did you not? Anaerobic exercise improved your pain, fatigue, depressed moods and overall quality of life in 2010 meta-analysis with almost 2500 fibromyalgia patients. The analysis examined forms of exercise on land versus water but found no superior one over the other.
“Indicial AE [aerobic exercise] should be adapted to individual physical fitness levels in terms of both amount and intensity. The German researchers concluded. Patients should start at levels that are just below their capacity and gradually increase their length and intensity until they are 20 to 30 minutes 2-3 times / week in low to moderate intensity exercise. Patient should be educated to have tolerable short-term pain and fatigue increases, but these symptoms should come back to basic levels during the first few weeks of workouts if they are exercised at the appropriate intensity.
A small Finnish study conducted in 2008 with the involvement of 26 postmenopausal women with fibroid fibromyalgia found that simultaneous strength and endurance training improved fatigue. A similar study involving premenopausal women also supported fatigue improvements.
In a 2013 meta-analysis with more than 300 fibromyalgia patients, different forms of meditative movement such as tai chi, qigong, etc. were examined and yoga alone helped relieve fatigue from fibromyalgia. Yoga enhanced pain and depression as well.
Join any support group with fibromyalgia and many of its members will probably recommend Epsom salt baths to reduce pain. Well, my fiber warriors are in something! It turns out! There has, for fibromyalgia treatment, been an improvement in fatigue, with at least three research studies (2001, 2004 and 2005) using mineral-rich baths or balneotherapy.
For many years, TENS (transcutaneous electro-nerve stimulation) has been staple of the pain-fighting arsenal of fibromyalgia patients. However, a small study from Brazil found that these inexpensive, over – the-counter devices can also alleviate weariness.
In a 2012 study of 39 patients with fibromyalgia and 38 healthy control, moderate improvements in fatigue with non-invasive cortical stimulation were found. (Say 10 times quickly!)
Studies on the efficacy of fibro-fatigue energy-low laser therapy were mixed-one study did not improve, but other studies were useful to reduce the symptoms of fibromyalgia.
Fatigue, pain and sleep quality were all enhanced by the Brazilian study in 2012 where patients with fibromyalgia followed certain guidelines for sleep hygiene.
“There are recommendations to sleep hygiene: avoid coffee, tea, alcohol; smoking and watching TV near sleep; regulate the environment in which you sleep such as a comfortable bed, optimum room temperature, avoid light and loud noises and be physically active on a regular basis but not too close to bedtime”
My current Lyme / Fibromyalgia pharmacist was just starting to work. Under his care, I have made marvelous progress. He’s by no means the best physician I ever saw. Yes, it’s all right! I would like to be able to clone him and send him all of you needing a great doctor!
I’d say I’m about 2/3 the way from fibromyalgia and Lyme recovered. I have had some other health conditions since 2013 that have complicated my recovery, which makes me not feel as good as I would if I only handled symptoms of Lyme / Fibromyalgia (failed lower back surgery for a bone-split, spontaneous fluid-spinal fluid leach and a fresh diagnosis for intracranial hypertonia).
So, here’s the reworking of my most recent treatment.
Responsibility: I’m not a physician. This post is only available for general information and does not replace medical care. Before starting new treatments, please talk to your doctor.
