Diagnosing MS: How Can Doctors Treat My Pain if They Don’t Know What I’m Suffering From?
When I had my first relapsing MS episode in 2007, after months of testing and treatment, I was told that I most likely had MS but that the doctors lacked enough data to give me a diagnosis. Such is the nature of the disease, but in my case, that led to a four year period of being on the fence over my conditions. Four years of not starting treatments but still living with symptoms.
After I finally received my diagnoses which also included Fibromyalgia, I went through another three years of following doctors’ orders and resigning to the fact that I would be faced with an uphill battle for the rest of my life. That was all before I reached my rock bottom and consequently changed my outlook.
Knowledge is Power: I Had To Be My Own Best Health Advocate
In the two years since that turning point, I have come across and tried so many different things that I would never have considered before I began educating myself about my conditions. I only wish I had tried many of them sooner.
That is why I am so willing to relive these painful memories and share my experiences with as many people as possible, with the hope that maybe some of what I went through can help some of you. Following are all of the things that I tried.
Prescription Pain Medications (Opioids)
MS & Fibromyalgia Drugs | Pain Medications That I’ve Tried
The following outlines the various medications that I have tried and what they are used for. I also describe my experience with these medications in terms of their effectiveness and side effects.
Solu-Medrol (IV Steroid)
IV Steroid Infusion. One of the only ways to disrupt an MS episode. Brutal, but necessary at times. Metallic taste in the mouth, dizziness, nausea.
Copaxone (Multiple Sclerosis Progression)
Daily injection for stopping progression of MS. This is a bit technical, but Copaxone is a non-interferon drug. I was avoiding interferon based drugs because they have a tendency to cause pain as a side effect and I didn’t need any more of that. The problem with Copaxone was, as indicated through a series of MRI’s, that the progression of MS was not being stopped. In addition, the injections were often painful, and the injection sites, despite rotating were almost always painful.
Cymbalta (Fibromyalgia Pain)
Daily pill for Fibromyalgia pain treatment. Saw some improvement over pain, but not nearly enough.
Gabapentin (Neuropathic Pain)
Medication which is often used for neuropathic pain. Around 16 pills per day. A big reason for so many of my stomach problems.
Zonisamide (Anti-Seizure Medication)
Anti seizure medication which can be used to try to prevent migraines. Still had migraines, although, possibly a little less. Another two capsules per day.
Tylenol-3 (Tylenol with Codeine)
Tylenol with Codeine. These really didn’t work that well at all for me so we moved on to Oxycodone.
Generic for Percocet. This was the first somewhat heavy duty pain medication they tried. Made me extremely nauseous every time, often even vomiting.
Generic for Vicodin. Switched to this because Percocet made me sick. Tried this for a while. Still had pain. The longer I took it (as my dependence and therefore tolerance increased) the less effective it was. At one point I was taking at least 6 of these every day.
Methadone (Synthetic Heroin)
Terrible. Terrible stuff. This is basically synthetic heroin. I was only on this for a little less than a month because it was so terrible. This was what my “Pain Management” team of doctors came up with since the Percocet and Vicodin weren’t working. I would literally be sitting on the couch having a conversation, in the middle of speaking…and pass out mid-sentence. I’d wake up a few minutes later (nodding off they call that). It was ridiculous, an on top of that, I was nauseous, dizzy, and still in pain.
Ondansetron | Zofran (Anti-Nausea)
Also called Zofran. Prescription anti-nausea medication. Yes, we tried to combat side effects from medications with even more medications.
Migraine relief medication. Mine were so severe that I was given the injectable Imitrex which was very unpleasant.
Naproxen (Prescription strength Aleve)
Huge prescription strength Aleve pills. Often took these in addition to Vicodin or another painkiller. Still had pain.
Aspirin | Aleve | Advil – Took as Supplements to Prescriptions (Bad idea)
I supplemented myself with these in addition to prescriptions because the prescriptions weren’t working. Never a good idea. Many prescriptions still use at least one of these as a base, even if you’re not aware, so I was taking way more than the recommended doses when I added these. Another reason my stomach was in such bad shape.
I never took all of these at once, but I was always taking more than one, so I don’t really know which drugs were giving me which side effects. However, I am sure that I was experiencing these side effects from one, some, or all of those drugs: dizziness, nausea, loss of appetite, stomach pain, stomach discomfort, acid reflux, indigestion, difficulty using the restroom, mood swings, depression, fatigue, vomiting, restlessness, inability to sleep well, irritability. I’m probably forgetting a few to be honest but there’s a start.
Treating MS Without Drugs is Possible
Physical Therapy & Chiropractic Treatments for MS & Fibromyalgia Pain
Physical Therapy Didn’t Alleviate MS Pain for Me
More harm than good for me, increased pain throughout the sessions in other areas while failing to really resolve the target. The last time I was in PT, though, I was on pain meds and didn’t have pain lotion.
Chiropractor Did Help my Fibromyalgia Pain
A good Chiropractor can really go a long way in helping to relieve some chronic pain, for me, I found that it helped with my Fibromyalgia pain as well as neck and back pain.
MS & Dietary Changes That Helped Relieve My Chronic Pain
In my research, I learned a lot of things about how diet can affect inflammation and therefore pain. Here are some of the insights I want to share.
Water Helps With MS Muscular Pain & Removing Built Up Toxins
This was really simple, but very effective. Drinking large amounts of water really helped me with muscular pain in particular, but really helps the body to function as it should while removing built up toxins which cause a great deal of inflammation.
Refined Sugar Can Increase Inflammation & MS Pain
I am not perfect, but I try to really limit the amount of refined sugar (white sugar and high fructose corn syrup), which also really helps to quell inflammation and therefore pain.
White Flour Can Aggravate the Stomach & Cause Inflammation for MS Sufferers
Again, I’m not perfect with it, but I really try to avoid white flour as it seems to aggravate stomach issues as well as inflammation.
Some Cooking Oils Are Pro-Inflammatory – Terrible For Chronic Pain Conditions like MS
I did not realize this before, but different oils are comprised of different types of fatty acids. Some of these fatty acids, mainly Omega-6, wreak havoc on chronic pain conditions because they are actually pro-inflammatory. I try to eliminate these as much as possible by avoiding oils like Grapeseed, Sunflower, Corn, Shortening and Margarine.
6 Holistic Treatments for MS & Fibromyalgia That Worked for Me
I’m not sure if you classify the following alternatives to pain medications as holistic, natural, or mental or all of the above but these are the lifestyle changes that work for me to limit pain in my daily activities.
1. Movement (Exercise) is Essential to Overcoming Chronic Progressive Deterioration
It’s better to refer to this as movement, rather than exercise, but they are the same. Movement is essential to overcoming chronic progressive deterioration as a result of the inability to exercise, or the confinement of movement due to chronic pain. For example, in my experience, I found that when I let pain limit the amount of movement or exercise I could do, both my stiffness and inflammation increased, my circulation decreased, and my muscles actually began to degrade to the point that it made back and joint pain even worse. A little bit of movement goes a long way, but you can never have too much either. I found that if running or walking was too painful, moving in water, or cycling work well without as much impact to painful joints.
2. Get Support – Mental Disposition is Key for Chronic Pain Sufferers – You’re Not Alone
Support is key too. Be it from family, friends or perfect strangers. Identifying with someone and being able to be heard and feeling empathy from others can go a long way to helping overall mental disposition, which is very important when dealing with chronic conditions. I found that sharing my experiences with people, both good and bad, really helped me not to feel alone in what I was facing.
3. Read Books to Keep Your Mind Engaged and Outlook Up
I found that reading books which engaged the mind was very helpful in keeping my mental engagement and mental outlook up. The first of the books that I read, which was recommended by Dennis, my dear friend and mentor, and would recommend anyone to read regardless of what their story is would be “Think and Grow Rich” by Napoleon Hill. The main takeaways I got from this book is to turn your weaknesses into strengths and to reinforce positive thoughts repeatedly, until they become true beliefs. Both of these are essential to forming the mindset necessary to overcoming chronic debilitating conditions.
4. Mental Engagement Can Promote a Positive Outlook When Living With Pain
Mental engagement is very helpful in keeping a positive outlook. This can include reading a book, talking with others, or even researching, as I did, information about my conditions. I found that the more information I could find about my conditions, the better prepared I was when something happened. It may seem little, but having previous knowledge about something before it happens actually takes the surprise out of it. The surprise aspect is part of what leads to that “helpless” feeling, which makes everything worse than it truly is.
5. Heat From an “Infrared Sauna” Will Loosen Up Joints & Muscles, Lessening Pain
I’m still in the midst of experimenting with this (as in I haven’t done it as much as I should), but using an infrared sauna is a great way to combat chronic pain. Many people with MS have a problem taking heat, but infrared heat is different than the suffocating heat of a steam sauna, and with digital temperature controls, it’s much easier to ease into the heat (start with a little bit and work up). The effects are fantastic though. As long as you are properly hydrated, the sauna will loosen up joints and muscles, allowing for a greater range of motion and lessened pain. The sauna also does a great job of flushing toxins from the body which can contribute to pain and inflammation. Using this before exercise can really take the edge off of the pain associated with exercise.
6. Mental Outlook – Living with MS Episodes & Staying Positive
This may be the single biggest key to overcoming my conditions. The side effects from all the medications and subsequent depression exacerbated the helpless feeling that I had, which only made everything worse. Day after day (or week, or month, or year) feeling helpless inevitably leads to looking at the world through a victims eyes. What I mean by that is you start looking at everything sort of as “what’s going to happen to me next”, “I’m just cursed”, “bad luck”, whatever it may be, you start seeing everything as a negative, and as no surprise, the result is very few or no positives.
An example of this, which happened to me during my last MS episode. In July 2013, I had a fairly major episode, during which I actually lost much of the feeling in my body and landed my in the hospital for a week. My whole body was constantly significantly numb, I’d estimate I only had about 30% feeling across my whole body. While I was out of hospital after a week, having endured physical and occupational therapy to try to cope with the loss of feeling (learning to walk again in a way), the numbness actually lasted for a few months.
I am fortunate that the feeling did eventually come back almost completely, but once I gained a new outlook on life in which I found the positives, I realized that I had missed a major opportunity. I had about a two month window where I was 70% numb. That numbness also included my pain levels. Had I realized it at the time, I could have used that two months to get a huge jump on exercising while it didn’t hurt so much. By the time the numbness would have worn off, I would have been stronger and my body would have been able to continue the exercise without so much pain. Instead, I saw myself as a victim with no power to change anything and lost out on a huge opportunity.
Don’t make the same mistake I did. As the book, “Think and Grow Rich” suggests – turn your weaknesses into strengths and reinforce positive thoughts repeatedly until they become true beliefs.