Fibromyalgia after Surgery and Pain Medicine Paradox

This is an email conversation I had with a woman who had two surgeries and now has fibromyalgia and extreme pain. She gave me permission to post this online in the hopes we could help someone else.

Hi Lisa,

Waking up this morning at 5 am in pain, I decided to open up your e-book as I always do when I need a reminder that things can and will get better.

I was diagnosed with Fibromyalgia following 2 surgeries to remove ovarian cysts- woke up in immense pain which has continued to control my life- 7 months later. I am beginning your protocol because what you have said makes so much sense to me. I see so much of what you have said about yourself in me, and I am so excited to begin this new stage in my recovery from fibromyalgia.

I just had a question for you. I know that our central nervous system plays a huge role in our healing. I keep struggling with the concept of pain medications with my healing. My pain at this point is all over my body, it wakes me up in the night, I am stiff as a board when I wake up in the morning, and I am entirely exhausted all the time. In order
to help get through the pain I am having to be on pain medication 3x a day- I am currently prescribed Ultram. The funny thing about the pain medications is that they actually are giving me energy.

I researched the different types of medications I have been prescribed… the list goes on and on (percocet, Nucynta etc) and have come to find that pain medications are generally have a nor epinephrine reuptake inhibitors-as well as some even have a nor adrenaline component.

With knowing as much as I do about the CNS, and trying to stay on a level of relaxation, I am concerned that they may hinder my recovery. However, the tylenol, advil, etc just do not touch the pain. I was curious, if you don’t mind sharing, your thoughts on the pain medication issue.

It has truly been hard for me to accept the fact that I have to be on pain medications around the clock, I struggle with this daily. However, when I do not take them I find myself depressed, unable to get out and move, my mood is infact very negative due to the constant pain- none of which promote healing.

Did you find when you took pain medications that they in any way hindered your healing process. Was there any specific medicine that worked well for you? When you say that you were in pain all the time, were you to on pain medications daily during the first year of so of your recovery? I am twenty six years old, just finished my graduate program, had a job for about two months before I was diagnosed and have since had to resign. My life
has changed completely and I am so glad that you took the time to tell your story as it has already helped to put me on a better path.

For the past few months I have been sinking, but I am going to take charge and get my life back.

Thank you for emailing me. I am so glad you have my book and are reading it Your intelligence and willingness and ability to investigate medical matters speaks volumes for you.

You are going to get better, I’m sure of it.

Ok, when I was diagnosed I was offered NO pain medicine except muscle relaxers. I’m not sure why. So I never took anything except muscle relaxers and army-size doses of ibuprofin. (when I was in the army, they used to give us 800 mg tablets of ibuprofin and tell us to take 2) so I had no problems taking 8 regular ibuprofin at a time. I wasn’t scared of them.

(please don’t do this – I look back on that with horror now – very dangerous)

So, my pain medicine was that I would take tons (TONS) of motrin a day.

I still take motrin occassionally, but thank goodness I only need one or two now.

My FIRST THOUGHT upon reading your email is that your fascia and muscles around your surgery sites are going to be FULL of trigger points and scar tissue.

Yes, I totally believe that this is enough to create and perpetuate fibromyalgia. What happens is the fascia shortens in these areas, but because fascia is connected all over your body, it pulls, and the rest of your body feels the pain of the shortened, kinked, tightened fascia in these areas.

Many of my worst trigger points were in my abdomen muscles and my groin muscles and my hip muscles.

I always thought they were in my back and neck because this was where I had the worst pain. I did have trigger points in my back and neck but the ones that MESSED ME UP the worst were in my abdomen, hips, and groin. (oh and neck was pretty bad too – these were the ones that made me nauseous)

So, I never had surgery. I can’t speak with any authority about what it takes to remove issues in fascia that has been cut.

I did have a lot of scar tissue though – I could feel it and I am sure it was from abuse when I was a kid – and I have been able to heal it and smooth it out … and I *believe* that fascia that has been cut will react similarly. You may always have the holes or the line .. but I think you can get the fascia back to full working order anyway.

What does it feel like to press on these areas? Is it quite painful? Can you find any ‘knots’? What did the doctor tell you about healing?

Honestly, I think that for you I would find a good massage therapist who believes in trigger points and have them examine your ‘spots’ and see what they would do. I would actually find two or three and see what each of them says.

I learned so much from each of my different massage therapists and their different approaches and techniques and thoughts on my body. Consider it a journey.

And then replicate what seems to work the best at home. (whatever hurts the most might be what works the best) Do you have the trigger point book?

Ok, that’s not what you asked me Sorry .. just had to get that out there.

On to your question about pain medications.

YES, I do believe that most (maybe all) pain medications will help with the pain but actually keep our body from healing (cruel irony – ha!)

That being said, don’t stop your pain meds! I understand your fear and your issue with this. I have felt the same way. But, like you understand, you do need to take your pain meds just to function and not feel like everything is pointless. There comes a point where the pain is so bad that you won’t be able to do what’s required. so don’t go there.

I would suggest starting to work on your fascia, and then wean yourself off your pain meds – with the help of your doctor – I’ll be honest with you here too … when you start working on your fascia, you will feel worse at first. so you definitely need your pain meds, in my opinion.

…. Have you considered the guai protocol?

…. One more thing I have to talk about. I don’t say too much about this in my book because it’s something I’m just discovering. Systemic enzymes. I talk a bit about enzymes, but not enough.

My son has cough variant asthma so I started looking into treatments other than steroids for him recently and discovered enzymes. Then I read a pain book that recommended enzymes (The Permanent Pain Cure). then I read another pain book that recommended enzymes (The New Aspirin Alternative) and now I am convinced that they are going to be a big deal in the future in helping with fibromyalgia.

The blurbs on the cover of The New Aspirin Alternative say

“The Natural way to overcome chronic pain, reduce inflammation, and enhance the healing response.”

and

“Escape toxic prescription pain drugs” and Capture your flexibility and rejuvenate your ability to be active and shed years of pain with systemic oral enzymes.”

This book recommends Wobenzym

The Permanent Pain Cure talks a bit about fibro, but the New Aspirin Althernative does not. I wish it did. It talks about Lupus and Arthritis and MS but not fibro. I think this is because it quotes clinical studies and no one has thought about enzymes for fibro yet so there aren’t any studies.

Anyway, the book says that systemic enzymes are as good as pain killers for controlling and stopping arthritis pain with no side effects.

Here’s an article about it

From the above article

Fibromyalgia is a multi-faceted disease demanding a multi-faceted solution and since a major aspect of the problem is the pain of ischemia, the only treatment available is also the safest treatment available, the use of highly fibrinolytic orally administered systemic enzymes, to safely lyse away the fibrin, free strangulated muscle tissue and open peripheral circulation by lysing away the fibrin that is clogging the blood vessels. If the unrelenting pain of FMS can be dealt with then the rest of the problems relating to the condition can be ameliorated with ease.

Basically, if you read the article, you will understand that the above quite says the only ‘medicine’ that can relieve fibro pain is one that can get rid of the fibrin and scar tissue that is all over all the muscles, strangling them. Only systemic enzymes can do this. This is why pain medicine doesn’t even work well with fibro, because the only thing that can restore peace to muscles without oxygen is getting oxygen to them.

There’s no dose given … the New Aspirin Alternative says many people start enzyme therapy on their own but if you have a doctor you trust you could start an informed treatment plan with them.

I did a week of high-dose systemic enzymes as recommended in the Permanent Pain Cure just a few months ago, and you know what, I saw results (which is hard – I don’t often find anything that gives me results anymore because I am so well). By results I mean I felt worse at first (low grade muscle pain) and then noticed more energy and flexibility.

So … I think that you might need to pick up a copy of the New Aspirin Alternative, and print out a copy of that article, and take it to the doctor that gave you the pain pills and see if you can work out a weaning schedule while you do enzymes instead.

But start self trigger point massage first. It’s important.

and don’t go too fast. … This happened over many years for me.

What are you thinking? … and can I share this on my website without your personal info? I think it could help many people. thanks!

You sure can post my story on your
site!

Sorry it has taken me a few days to respond.. I have been having quite
the hard time lately and have not even felt emotionally or physically
well enough to get on the computer. I remembered today that I needed
to write you back, so I am doing just that- no matter how I feel!

Okay, to comment on your email. I def agree with you with regard to
the muscle pain and trying the trigger point massage. For about 2
months, I was seeing a myofascial release physical therapist- who
deals with fascial restriction and releasing the fascia as well as
integreting deep breathing techniques into the treatment plan.. The
treatment was one hour long and I saw the therapist twice a week. It
seemed to really help calm the nervous system and it felt amazing
(most of the time).

But after the two months of sessions, I just
recently called a quits. I found myself so discouraged. I have been
running around from doctor to doctor for 6 months trying to get my
symptoms under control.

I have a great massage therapist who I was
seeing twice a week. I have not seen her the past two weeks because I
have been in miserable pain and in somewhat of a depression as a
result of this illness. My pain seems to be in the muscles, however,
I also have pain in my fingers, and my teeth are sensitive as well.

Let me just give you a little back round about what happened following
my surgery.

When I awoke from surgery, it was as though my nervous
system went hay wire. Lights, sounds, and the pain was out of
control. I stayed in the hospital for 3 days following ovarian cyst
removal which is generally unheard of. The pain originially started
in my lower back following ovarian cyst removal. The pain was so bad
for the first three months that I was on pain medicine around the
clock and was on sleeping pills (AMBIEN at that) for about 3 months.

The lower back, although still a bad sorce of my pain (I wake up in
the morning and it feels like I have been beaten to death- everywhere)
is not the only source of pain anymore. With time it spread to my
upper back, shoulders, now wrists, fingers, arms. Just depending on
the time of day.

It is so bad at this point that I have to be on pain
medication from the minute I wake up until I go to sleep. My sleep has
also been effected, I have the worst time falling asleep at night, no
matter if I take Lunesta (sleeping pill) or a muscle relaxer. Did you
have issues with sleeping during your healing process?

I have read your book entirely and will be printing it out. There is
so much good information that I am going to read over it again and
highlight what is most important.

So from your standpoint, you
believe that the trigger point book is worth investing in. I spoke
with my massage therapist about trigger points and she had said that
she wanted to hold off until my pain was more stable. As for the guai
protocol, I am currently under the care of a chiropractor who is also
a wellness specialist.

He seems to think that this protocol does not
help with the symptoms and pain. He has this less is more attitude,
like your body can heal on its own if you just give it what it
needs… ie. fresh fruits, vegetables, meats, fish. I am currently
taking many supplements- fish oil, vitamens, progesterone (due to
estrogen dominance).

I feel like I am being pulled in all different
directions because each specialist tells me something different. My
life has changed completely. I also have adrenal fatigue- which I am
currently taking supplements for- and I am hoping this will help to
give me some of the energy back. I wake up in the morning weak,
however I am unable to nap or sleep at night, it’s a vicious cycle. I
was originally put on cymbalta to help with pain, which did seem to
take a good amount of the pain away, but it caused me to be more
depressed, so I had to get off of it.

I have always been an anxious
person, and feel that I have always needed something to help with my
nervousness, but anti depressents don’t seem to do the trick for me.
If you do not mind me asking, were you prescribed any SSRI’s or SNRI’s
to deal with the condition, and if so did anything seem to help?
Although my chiro wants to keep me on as little medicine as possible,

I am willing to give anything a try at this point- especially the
guai- it seems like it’s worth a try, especially if you had good
results with it. Doctors can give advice, but sometimes they just do
not understand the pain- and at this point I am looking for relief,
but also looking for something that will not interfere with my healing
process.

I will follow your advice and get the trigger point book. Do you
think that guai was helpful for your recovery? Or would have been
helpful in the first stages of fibro? Did you notice symptom relief?

It’s funny because I have joined a support group, and many of the
women say that they have fibromyalgia “flares”- with both good days
and bad days. I have yet to have one good day since I had the
surgery. It makes me wonder if I have a really awful case of
fibromyalgia.

When you were first diagnosed with the condition, did
you have good days where you were able to function without alot of
pain? I think I get discouraged because I hear of all these people
that are managing their fibro with just supplements, and my body does
not seem to be responding to anything I have done this far.

I do not
believe that my body has recovered from the initial onset of the
fibro, because I have yet to have relief. I know you had said on your
site that your first year was the worst- you were in pain all the
time. Did you work during this year? How on earth did you get through
it?

Also, were you able to exercise? I often notice that I hurt much worse
after exercise, even if I am on pain medication. I have been doing
light walking- about a mile every other day- but I am wondering if I
should call that a quits too.

Also, in your book you say that
stretching helped you alot in your healing process, how long would you
say it took for you to see results? I will continue with my stretches
and meditation. In my case, I think that my body crashed after the
surgery. I think my central nervous system has gone hay wire and I
need to get that under control, I am sure it takes time.

My
pessimistic attitude has not helped either- I am such a worrier and
always have been- this is probably why I have ended up with the
condition. I was also on adderall for abou six years through college
and a Master’s degree (just finished in 2009), this medicine allowed
me to push myself beyond belief. Another reason why I believe the
surgery was the breaking point to my health.

Oh and I am currently seeing a compounding pharmacist and will talk to
him about the enzymes. Thank you!!!

You give me inspiration. Thank you for your response. Let me know
what you think.

Hi Michelle,

I understand if you can’t get back to me at some point – don’t rush for me.

I definitely recommend that you see your therapists if you can. Massage and fascial release will peel away layers for you. Very helpful.

Regarding what happened to you with your surgery – it sounds very extreme to me. I’m sorry it happened and it sounds to me like you are going to need a lot of time to heal from this. How long exactly has it been?

I did have issues with sleeping, but nothing like you are describing. Mine was more because I couldn’t shut my mind off and would wake up to any noise and not be able to fall back asleep and sometimes I needed to eat – stuff like that.

The trigger point book is really important for you I think. You are going to want to learn to treat your own trigger points because you will learn so much from your body that way. You can become the expert on your body, and you can come to a point where you will ‘know’ – you will get an intuitive sense of what’s going on with your body. This is what you want, and learning to treat your trigger points can give this to you.

Plus, if the massage therapist thinks your trigger points are bad enough that she is not going to start on them yet, then you treating your own will give you the control to start soft and easy. .. to do only one muscle or group at a time … stuff like that. A massage therapist will generally treat everything she can fit into an hour, leaving you a sore mess later that evening and the next day.

Guai protocol … I had great results from it. Immediate results, but I don’t know if you will. Your biggest issue seems to be your nervous system, and your fascia (muscles) is seconary to that, instead of the way I had it, which was fascia biggest issue, and nervous system was secondary to that. … essentially. …

I do think that my nervous system being overactive had a lot to do with me getting fibro, but there was a point where the fascial adhesions took over and became a bigger problem – to me though, it sounds like instead of your muscles surpassing your nervous system as a problem, your nervous system just keeps getting worse along with your muscles. what do you think?

I do like that you are under the care of a doctor that believes in the healing power of the body, that’s wonderful, but it would be nice if he were open to things you want to try. If he were trying to keep learning new ways to help people and not just think he knows everything. There is nothing toxic in guaifenesin as far as I know. There is no reason not to be open to it.

Ok, the anxious person thing … yes, you are going to need to tweak your personality a bit to get totally better, I think.. I was always anxious and high-strung too, and that had to go. I worked and still work very hard on that. I do yoga every day. I take baths. I stay calm. I throw out thoughts that make me feel nervous. Earlier today I had a thought trying to wiggle its way into my brain that would have made me very anxious about the future, and I just had to laugh at it and let it go. … and I can do that now. .. and it took me many years to get good at this. I read a LOT of books. I did a lot of self-therapy. I tried everything. and it’s paid off.

I was not prescribed anything except muscle relaxers. I’m not sure why. It was almost 8 years ago – maybe that has something to do with it – or maybe because I never went back to the doctor after she basically told me she couldn’t help me.

Yes, your fibro sounds very extreme to me. But you can still get better. really. I was mostly able to function, although I was ALWAYS in pain. I didn’t start having pain free days for about a year I think.

Now that I am 7 years in, I have one day of pain every … say two months, and I can always pinpoint what I did that caused it. Always. (an usually it’s more like a few hours of pain and then I fix it) The rest of the time I feel fantastic. Everyone I know my age is always complaining about how they are stiff, and they can’t get up off the floor if they go down and their back hurts and on and on .. I don’t have any of that, and that is a gift I got from reversing fibro. You can have that gift too

I got through it because it’s either get through it or die and I wasn’t ready to die and neither are you. Don’t worry, I have a feeling you will have a decent day soon, and then you will get some hope.

I was able to exercise. Certain exercise would make me hurt worse, but walking never did. And so I walked. I wouldn’t stop walking. Definitely do something if you can.

Stretching, there’s a certain type to start with – I have outlined them in my book. this on the floor restorative stretching is different and will have different results than anything else you do. The supproted childs post and twisting child’s pose are really important. I did those for hours each day. I think I started seeing … I don’t want to say ‘results’ because that seems so measurable, and nothing was really measurable in that way … but I started feeling better right away after I first started that stretch … while I was in it. I started feeling better the rest of the day maybe in 5 or 6 months.

Wow, I’ve never heard of adderall but I just looked it up and yes .. I think that could do it to you. There’s your nervous system jacking up issues. But that’s ok, you still can get better. I know it. Does your doctor know you took that for so long?

I am sure enzymes can help you. I also wonder if fasting could help you.. have you ever thought about fasting? Do you have any eating issues? People don’t generally recommend fasting for fibro but I have read such wonderful things about fasting and healing that I wonder if it would work well. Especially for someone who wanted to get well as quickly as possible.

Anyway, let me know what you are thinking here. Wishing you a good day, Lisa

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  I am not a doctor or medical professional. I am a woman who once had fibromyalgia, but now I don't. I am trying to share what helped me and what didn't. Nothing on this site should be construed as medical advice.
  

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