10.13.2015

I think I’m getting better (and here’s how I’m doing it)

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How one fibromyalgia sufferer is improving her symptoms.

Disclaimer: A couple of people who have read the following post online have accused me of trying to “sell” my doctor’s fibromyalgia program. The intent of this blog has always been to provide helpful information to the fibro and ME/CFS community. The intent of this post was to share the steps that I’m taking in an attempt to feel better. In no way should it be construed that I’m “selling” Dr. Murphree’s program. I am not profiting in any way from mentioning his program. (I don’t even think that Dr. Murphree is aware of this post yet.) No one has to sign up for a program to incorporate most of the actions I’ve outlined below. Many can be done on your own. Most of his protocols also are included in his book, which is available to checkout (for FREE) at many public libraries. 

This post contains Amazon affiliate links. 

I’ve steered clear of writing “how I’m feeling” posts because there are so many other chronic illness bloggers out there who do that. There’s nothing wrong with that kind of post; it’s just not what I usually do. I’ve always been a problem-solver, so my posts tend to be more helpful than personal. But this post will be a bit of both.

When I got sick several years ago, I never accepted that I’d spend the rest of my life exhausted and in pain. I kept looking for answers. I’ve tried so many things over the years to manage my symptoms. Some stuff has helped (like low-dose naltrexone and CBD oil), and a lot of it hasn’t, like the drugs prescribed by my well-meaning rheumatologist.

But I think I may have finally found what works for me. If you’ve been following me for a few months, then you might have read that I’m a new-ish patient of Dr. Rodger Murphree. Dr. Murphree practices functional medicine out of Birmingham, Alabama (U.S.). For the past 18 years, he’s specialized in treating fibromyalgia and works with patients all over the world via phone consults.

Dr. Murphree doesn’t promise a cure for fibromyalgia, but he does have a good record of helping fibro patients feel better. His basic philosophy is that most pharmaceuticals don’t treat the underlying cause of disease; they just mask symptoms and often with bad side effects. He focuses on using vitamins, minerals and amino acids to restore the body to health. (My words, not his.)

All of our appointments are over the phone with email support when needed. When I need blood work, I have it done at my local laboratory (LabCorp).

Yeah, I know it’s a little weird to have a phone doctor. But think about it: When was the last time your rheumatologist (or whoever treats your fibro) really did a hands-on examination? I can’t remember the last time my rheumatologist actually touched me. So working with a doctor over the phone isn’t such a stretch, is it?

But it is a stretch for my wallet to work with him since he doesn’t accept insurance. Truth be told, I’d probably spend my entire savings if I knew it would make me feel better. I’ve really been struggling the past 12 months or so with increasing pain and fatigue. I’ve been questioning whether I need to apply for disability because I’ve been struggling to work, even though I’m fortunate enough to work at home. None of the commonly prescribed fibro drugs that I’ve tried have helped me. They either didn’t work at all, or the side effects were so bad that I couldn’t take them. My rheumatologist and primary care/nurse practitioner are no help. And unfortunately, Delaware (U.S.) isn’t exactly a mecca for fibromyalgia specialists.

I learned about Dr. Murphree while reading an online article. I listened to a couple of his webinars and watched all of his YouTube videos. I started reading his book, “Treating and Beating Fibromyalgia and Chronic Fatigue Syndrome.”

But I think what finally sold me on working with Dr. Murphree is something that he sometimes says at the end of his Tuesday night seminars. I’m summarizing, but essentially it’s that if you keep doing the same thing over and over, you’ll keep getting the same result. (Einstein calls this the definition of insanity.) I decided that traditional medicine wasn’t working for me, and I needed to try a different approach.

Yet another round of blood work … and finally, abnormal results …

Dr. Murphree and I had our introductory phone consult in late July. Within a day of signing up for his 6-month program, he ordered a bunch of tests to check my thyroid, adrenals and other things. As a functional medicine practitioner, he ordered a few different tests than my traditional doctors. For example, one test involved collecting saliva into small tubes over a 24-hour period to measure how my adrenal glands were functioning. Most traditional doctors don’t even recognize adrenal fatigue, much less test for it.

He used my test results to tailor a new supplement regime to address my body’s deficiencies. My supplement protocol includes the following:

  • A high dose, good quality multivitamin – I use the Alive brand to save money, but he offers his own version on his website.
  • Adrenal Cortex – My saliva test showed that my adrenals aren’t functioning properly.
  • Digestive Enzymes – This helps to deal with my excessive stomach acid/GERD.
  • Sam-E – This is to improve mood and energy.
  • Thyroid 130 – My tests showed that one of my thyroid levels is high.
  • CoQ10, vitamin D, fish oil and a probiotic – I was already taking all of these prior to working with Dr. Murphree.

Finally getting some zzzzzzzz’s …

Lack of restful sleep has been an issue for me for many years. I’ve taken all sorts of supplements and pharmaceuticals over the years, trying to find the right cocktail to help me sleep through the night. I didn’t have a problem falling asleep. I just couldn’t STAY asleep. I would wake up about every 2-3 hours and never really get a long stretch of sleep. I think I’ve finally found a formula that works. Here’s what I’m taking:

  • 5-HTP and melatonin – This is part of the sleep protocol that Dr. Murphree discusses in his book. I’m taking 10mg of melatonin at bedtime. Yes, I know it’s a large dose, and I also know melatonin isn’t for everyone, but it’s working for me.
  • Magnesium malate – I started taking this shortly after my diagnosis. It seems to help with restless legs and overall body aches. I’ve read that it helps with sleep, so I take it at bedtime to get that benefit.
  • AdrenalCalm – This is a topical adrenal supplement, recommended by Dr. Murphree, that I apply to my inner arms every night before going to bed. It’s supposed to quiet my adrenals so they don’t surge and wake me up in the middle of the night.

I still take Flexeril (prescription muscle relaxer) occasionally if I’m having a high pain day. It doesn’t stop the pain, but just knocks me out so I don’t feel it.

I’ve also changed my medications for overactive bladder. After writing a story for one of my clients on pelvic floor disorders, I realized that I needed to readdress this issue because my overactive bladder was waking me up at night. I saw my urologist, and now I’m taking Oxybutynin and Myrbetriq (new) together. My symptoms are so much better!

I’m not sure which has helped the most to improve my sleep – the new sleep supplements, adding Myrbetriq or a combination of both. All I know is that I’m sleeping better. I still wake up once or twice a night, but that’s a great improvement over 3-6 times a night. There are some nights when I actually sleep 5-6 hours straight. That hasn’t happened in years!

Addressing low energy and the doldrums …

Quite a few of my subscribers found Fed Up with Fatigue through my post on d-ribose. A few months ago, my energy was so low that it was affecting my ability to work and get things done at home. D-ribose helped improve my energy level so that I didn’t require as many naps to get through the day.

When we were evaluating my supplements early on, Dr. Murphree suggested trying Sam-E for energy and mood instead of d-ribose. Within a couple of weeks, my energy levels were a little better than they had been on d-ribose. Sam-E also does a great job at improving my mood. (I did a full post on using Sam-E for fibromyalgia here.)

My nemesis and savior: the anti-inflammatory diet

Three weeks ago, Dr. Murphree said it was time for me to start on his anti-inflammatory diet. I eat fairly clean already, but I knew I wasn’t going to like his diet one bit based on what I’d read in his book.

And I was right. I pretty much hate everything about the anti-inflammatory diet. But my body loves it.

Dr. Murphree uses SHAPE ReClaimed weight loss drops in conjunction with a low-calorie, limited foods diet to help patients lose weight and reduce inflammation in their bodies. I’m two weeks in. I’ve lost 7 pounds, and my pain is probably 25-30% of what it was when I started. I’m amazed the diet has made that big of a difference. Obviously something I was eating was causing my pain to flare up.

The anti-inflammatory diet is not for sissies. I’m only allowed to eat certain proteins, veggies and fruit in certain portions each day. No gluten, no sugar, no artificial sweeteners, no peanut butter, no cheese, no pasta, no rice, no bread, no potatoes, no regular salad dressings, no oils. N0 weekly doughnut treat from the farmers market!

I’ve bitched about this diet every single day. I know my hubby is sick of hearing me complain. But as mentally miserable as I’ve been because I can’t have the foods I’m used to, I can tell that my body is happy. It likes this new diet. Even my hubby said the other day, “You look like you have a lot more energy …”

I have to stay on the diet for at least three weeks, and then we can discuss modifying it to add a few things (like avocados, olive oil and a little cheese). Ideally, I’ll eat this way until I get the 40 pounds off that I gained from taking Lyrica and Amitriptyline.

So, I’m about 10 weeks into Dr. Murphree’s program at this point, and here’s where I am: I’m sleeping better, I have more energy and my body is in less pain. I’m a long, long way from feeling normal, but I just might be heading in that direction…

Now it’s your turn: What helps your fibromyalgia symptoms? I’d love to read about your successes in the comments below.

Update as of May 2017…

I just noticed the National Fibromyalgia Association shared this post on Facebook, so I’d like to give an update on my progress. I was Dr. Murphree’s patient for 9 months. In the end, his program did not work for me. I did make some improvements using his protocols, and to be fair, he helped me more than any other doctor ever has. But toward the end of my contract with him, I felt like he gave up on me as a patient. I think he had literally run out of ideas. You can read my final entry about his program here.

About six month after leaving Dr. Murphree’s practice, I found out I have chronic Lyme disease. I’m sure that contributed to me being unsuccessful in his program.

Knowing what I know now, I would not have spent the money to work with him. I am still paying off his program on my credit card. Instead, I would buy his book and work through his protocols using that.

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Comments

  1. Janine says:

    Loving this site. Second week after official diagnosis and I think I have read about a thousand articles in that time. Glad to finally have a diagnosis after a long period of searching but am also weary of watching the “old” me and the life I had rapidly disappear.

  2. So you are not taking the LDN anymore? I was going to ask my do to perscribe it for me now I am questioning it? So confused. Tired of taking perscribed drugs that make me tired .

    • Donna Gregory/FedUpwithFatigue.com says:

      I’m actually back on it now. Dr. Murphree wasn’t a fan of LDN, so I stopped taking it while I was using his protocol. When Dr. Murphree’s protocol ultimately didn’t work for me, I went back on it. In addition to the information you can find on my blog, you might also want to join the LDN/fibromyalgia Facebook group. There are lots of people in that group who are benefiting from LDN, and it’s a great place to ask questions and get support. Here’s a link in case you’re interested: https://www.facebook.com/groups/108424385861883/

  3. Roberta Churchill says:

    I have recently found your blog and am so grateful, indeed, for it. I was diagnosed with fm over 20 years ago and am 83 now. It’s been a tough slog and expensive going to a so called fms clinic 2 hrs away, with dear husband driving me. After a year of pills, pills and more they raised their rates astronomically. I gave up. Then last year started homeopathic md one hour away. Same routing. Very expensive. She helped with IBS but nothing more. I have been having a really bad patch for over a month now, but reading your positive experiences and listening to Dr. M. today I feel hopeful yet again. I shall read book and go from there. Thanks so very much for lifting my spirits and suggesting new avenues to explore.

    • Donna Gregory/FedUpwithFatigue.com says:

      You’ll learn a lot from reading Dr. Murphree’s book and watching his videos. He also does free phone calls where you can call in and ask him questions. I think they are on Tuesdays. There should be information about the calls on his website.

      In hindsight, I probably would not do his program again. I feel like it cost way more than the results that I received. But that being said, I have talked w/ other patients of his who are very happy w/ their progress. I found out last spring that I have Lyme disease, so that is probably a BIG factor on why I didn’t make more progress using his protocol. Hugs to you!

  4. Debby says:

    Do you have an updated blog on Dr. Murphee? I can’t seem to find one. I got his book recently and I’m seeing what info I can find as far as people’s results that aren’t testimonials on his website or in his book.

    • Donna Gregory/FedUpwithFatigue.com says:

      Hi Debby, I am no longer working with Dr. Murphree. My last blog post related to his program is here: http://fedupwithfatigue.com/doctor-gives-up/
      Since then, I have been diagnosed w/ chronic Lyme disease, so I’m sure that is a factor in why his program did not work for me. Feel free to email me at donna [at] fedupwithfatigue.com if you’d like to chat further.

  5. Jamie says:

    Hi,
    I feel fed up. I had cancer, and now chemo induced fibromyalgia. I was doing phone consults with Dr. Murphree and he was not able to help me. Please help? I seriously don’t know what to do anymore.

  6. Joyce Sills says:

    I’ve been reading in your blog and have been finding interesting and helpful(perhaps) things to explore
    further. I get a severe migraine plus fibro pain every single day at the same time of day (2pm) for the past 2 years or so. I have been taking one hydrocodone-apap 5-325 the past three weeks when I get the migraine and it makes the symptoms go away–head pain, nausea, light and sound sensivity, the works. I feel I have more energy, too, and have been wondering: maybe its not the pill per se but the fact that the pain has lifted. Pain is such a burden, maybe just its absence gives me the reduction of fatigue I feel.

    I hate taking the narcotic every day because I’m afraid my body may accustom itself and need a larger dose as time goes on. Also, here in Florida it’s very difficult to find a brave enough physician to prescribe it. And the neurologist I sought out partly for the headaches does not believe in his patients taking ANY painkillers, even tylenol.

    • Donna Gregory/FedUpwithFatigue.com says:

      Have you heard how Topamax is helping some fibro patients with migraines? Apparently it’s a very common migraine medicine, but in some patients, it’s helping to relieve other fibro symptoms as well. Might be worth a google search if you haven’t seen the recent stories on it.

      • Colleen says:

        I was on Topomax for about 4 years make sure you start off low dose for a week and then you add another pill wait another weekor so then if it is required the third pill. If you ever go off you have to wean yourself off the same way. Do not abruptly start are stop. Also if you are a soda drinker you will quit. Any carbonated drinks taste like metal. I used to drink a lot but I never thought 5 years later and a full year off topamax I have no desire for soda. Also it does help loss some weight.

    • Patti Major says:

      Joyce,
      I am a severe migraine suffer and my physician has given me Imitrex. It comes in 3 different routes, pill, nasal spray, and injection. I find that the injection works the fastest but usually use the nasal spray due to its ease for traveling. I to live in Florida and have no problems getting Hydrocodone for my severe back problem from 4 back surgeries. You need to find a pain management MD, pain is the only thing they deal with.
      I was on Topamax previously but it did not help my Fibro pain, the only thing it did for me was to make me nauseous.

  7. Fibrostinks says:

    Hi Fed Up! It’s Me Fibrostinks from Fibro site. I am loving reading your blog/posts. Keep positive and boogie on! Take care, Dee Dee

  8. That’s awesome. Finding such a supportive and helpful doctor is a blessing. It’s great his protocol is working well for you. I feel like I have the same aims and outlook as you but I’m approaching it a bit differently (with some similarities)– I’m following Dr Rawl’s restore program. Long may our health continue to improve for both of us 🙂 When it comes to diet, I put my energy and focus into thinking about foods nourishing and healing my body over thinking about it in terms of what I can’t eat. I was 100% strict for 6 months. I now find I can tolerate a little “treat” every now and again without any problems

    • admin says:

      Thank you for the encouragement. The diet is getting easier as my body is gets used to only eating certain foods. I’m not having cravings as much as I was. My doctor has allowed me to add some foods back in occasionally, so that has helped some as well. Glad you’re having some success with the Restore program. I’m looking forward to reading your update on your blog.

  9. Hi there, I am glad you are feeling better. I am a male with fibromyalgia and I also have Sjogren’s Syndrome. How much are the phone consultations with Dr Murphree? How much are the supplements? How many pills are you taking?

    • admin says:

      He offers a one-time consult for $129, I believe. That’s an opportunity to talk with him about your health concerns, ask questions, etc. Then, there’s a fee if you decide you want to work with him through his 6-month program. I don’t feel comfortable sharing that amount b/c that really needs to come from his office. It’s an investment, but my brother reminded me that I’ve probably already spent that amount on other doctors who have done nothing for me, and he’s absolutely right. The supplements vary in cost. The cost of his program covers $800 in supplements. After you’ve used up your allowance, he offers a discount on anything that you want to buy directly from him. You can save money by buying some things on Amazon or at your local stores. For example, I don’t use his multivitamin but I found a comparable one on Amazon. Altogether, I am taking around 25 pills a day. That includes 2 prescription medications, and several of the supplements require multiple pills to get the best results. I believe I listed everything that I’m taking in the post, and I tried to provide links, so people could get a sense for cost and whatnot. Happy to answer any other questions.

  10. Sakkara says:

    I found your blog a few weeks ago after tirelessly reading about CBD oil to try to find one that will work. I’ve been using the one that you tried with success for a week now and also using Ribose and while it’s only been a week I feel so much better. Now it’s too soon to know if it’s the oil and ribose or if I just came out of a bad flare but my energy level is so much higher than last Monday.
    I actually felt the change in energy a day and a half after using the CBD oil. I started The ribose 5 days ago. I don’t take any “fibro meds” but I do take narcotic pain meds which have been the only reason I can get out of bed, but they don’t do anything for the fatigue.
    Just wanted to thank you for helping to steer me in the right direction! I really hope it is the CBD OIL!

    • admin says:

      I’m so happy to hear that you’re feeling better!!!!!! My experience was pretty much the same with CBD oil. It worked very quickly for me. I think that once we get past the legal issues associated with marijuana that researchers will find that it’s very effective for lots of conditions, including fibro. I know that I continually hear others with fibro talk about how they find relief with cannabis products. D-ribose is another natural option that not enough people have heard about. I was very happy with how it’s helped my fatigue. I’d love for you to keep me updated on how things are going. Feel free to post updates here, or you can email me directly at donna at fedupwithfatigue.com.

  11. YAY! I’m so glad that this is helping you and you are seeing so much improvement so soon. What I will say on the diet thing is stop focusing on what is being taken away and look at it is you have chosen to avoid certain thing in order to feel better. It’s not for life. At some point you’ll likely start reintroducing some of the foods you’ve removed to determine which ones cause you the most pain/symptoms. But, for now focus on how much better you are feeling without those things in your life and recognize that you are doing yourself a favor. I’ve been there so I do know what you are going through but I just stayed focus on how much better I was feeling. I still hated missed the chocolate, but I felt better. Also, after a few weeks the cravings should go away and that will help too.

  12. I’m curious, why did you stop the LDN?

    • admin says:

      I stopped feeling the pain reduction benefit from it. I probably should have increased my dose to see if that would work, but it was about that time when I needed to stop taking most of my supplements for the testing for Dr. Murphree’s program. LDN would have affected my test results, so I stopped taking it a few days before. I just never started back. If the current program stops working, I will go back to LDN and increase my dose. It worked very well for me for many months, and I’m still a big fan of it because it has helped so many fibro sufferers. I hope that answers your question.

Trackbacks

  1. […] and I will be starting back on it next week. (I’ll give an update on how I’m changing my treatment protocol in an upcoming blog post.) LDN has helped to reduce my pain when no other pharmaceutical has, and I […]

  2. […] then my new fibromyalgia doctor ordered me to go on a strict anti-inflammatory, gluten-free diet. During the first two months of the diet, I allowed myself one “cheat” meal a week, […]

  3. […] I think I’m getting better (and here’s how I’m doing it) […]

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  7. […] I think I’m getting better (and here’s how I’m doing it) […]

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  9. […] I think I’m getting better (and here’s how I’m doing it) […]

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