03.29.2016

I’m stalled … and here’s what I’m doing about it

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It’s been almost six months since my last “how I’m doing” update. The short answer, which I guess you already know from the title of this post, is I’m stalled.

Despite seeing improvements in sleep, fatigue and gastrointestinal issues, my fibromyalgia pain is still lingering. But I'm not giving up! Here's my game plan for how I plan to reduce it!

(This post contains affiliate links.)

My longtime readers know I started working remotely with fibromyalgia specialist Dr. Rodger Murphree in August. As part of his six-month program, he overhauled my supplement regime and put me on an anti-inflammatory diet. (I wrote about my supplement and diet changes in my last update here.)

I’ve made good progress since then:

  • I lost 45 pounds! – Thanks to the anti-inflammatory diet, I’ve dropped all of the weight that I gained while taking Lyrica and Amitriptyline after I was first diagnosed. It took six months, and it wasn’t easy, but I definitely feel better not lugging around that extra weight. Big win!
  • My sleep is greatly improved – Six months ago, I was waking up about every two hours and having difficulty getting back to sleep. Dr. Murphree recommended a higher dose of melatonin, and my urologist prescribed a new medication to calm my overactive bladder. Between those two changes, I only get up about once a night now. I still have difficulty getting back to sleep sometimes, but it’s less frequent than it was.
  • My energy/mood is better overall – The turning point was adding SAMe, 5-HTP and DLPA to my supplement regime. This combo has been a life changer for me! It’s improved my mood and energy levels, so that I’m mentally better able to handle life with fibromyalgia. (FYI: These supplements aren’t recommended for prescription antidepressant users because they affect serotonin and dopamine levels.)
  • My digestive issues are better, too – I no longer use Nexium to control acid reflux, and I’m not eating Tums like candy. Instead I take digestive enzymes with each meal to naturally balance my stomach acid. I’m sure the changes in my diet also helped. I have much less bloating, gas and overall digestive issues than I did when I started the anti-inflammatory diet.

I am forever grateful to Dr. Murphree for helping me to make these improvements. He took me from a place where I was considering applying for disability benefits to someone who is more functional.

But now I’m stuck …I still have quite a bit of pain. Throughout the fall months into December, my pain levels were improving. Going gluten free and cutting other bad stuff out of my diet really seemed to make a difference. I was in bed one evening in December when I realized my legs weren’t hurting! It was the first time in years that they weren’t in pain. You can’t imagine how excited I was by that! It gave me hope that a recovery was possible.

And then came January. My pain returned in force. We’d had a mild December with some days reaching 70 degrees here. In January, the thermometer plummeted, and it’s been pretty cool ever since. I’ve wracked my brain trying to figure out what changed, and the only thing I can figure is my pain increased with the change in the weather. I really, really hope my pain levels aren’t tied to the weather because I can’t do a damned thing about how cold it gets (other than move to another state, and that’s not an option right now), but at this point, that’s the only explanation I have.

Nothing has taken the pain away. Not hemp CBD oil, which helped in the past. Not Tramadol. Not eliminating more foods from my diet. Not tweaking my supplements. Nothing. It doesn’t matter what I do. It … just … won’t … stop. 

And then, I recently found out my nasty case of plantar fasciitis isn’t plantar fasciitis after all. Turns out, I was misdiagnosed by my first podiatrist. My second-opinion podiatrist is having me evaluated for peripheral neuropathy, a common co-morbidity in fibromyalgia. What initially started as pain in my feet has now evolved into pain, numbness, tingling and burning. It’s miserable, and my feet hurt constantly. And needless to say, it’s affecting my ability to do even basic things like grocery shopping or cleaning.

It hasn’t been a good three months, but I’m not deterred. If my weather theory is correct, then my pain should subside once the warmer spring temperatures finally set in. I’m hopeful – even though it will mean that I’m fighting a force of nature that’s out of my control.

In the meantime, I’ve given some thought to what, if anything, I can do to break out of this stall and further reduce my symptoms. Here’s my plan:

  1. I’ve started walking. I’m still trying to get into a routine, and I can’t go anywhere near the pace that I did when I was healthy. It’s also painful – especially because of my feet. But I’m committed to establishing a walking routine because exercise is supposed to help over the long term, according to the latest fibromyalgia research.
  2. I’ve gone back on low-dose naltrexone. I stopped taking LDN last August when I started working with Dr. Murphree. At the time, it didn’t seem to be working as well as it had in the past, and I decided to stop taking it. Since then, I’ve learned that some patients experience greater pain relief at higher doses (up to 9 mg). I’m currently taking 4 mg and will increase my dosage over the coming weeks to see if it will relieve the pain.
  3. I’m also giving serious consideration to applying for my medical marijuana license. I haven’t done that so far because it’s expensive and out of respect for my husband who is against the use of marijuana. But I’ve explained to him there are CBD-rich marijuana strains that will not turn me into a pothead, and he is more open to the idea now. I’m lucky I live in Delaware where medical marijuana is legal, and there’s a dispensary about 30 minutes from me.
  4. I also think I need to address my mental/emotional health. I always feel kind of wired and revved up (even when there’s nothing stressing me out), and I’m sure this affects my symptoms. I used to have a daily meditation/yoga practice, but gave that up when we moved to our new home, and I lost my practice space. I think it would be good to reestablish a daily practice to help manage my stress levels because we all know that stress aggravates fibro symptoms.

So that’s my plan as it stands today. I will never stop looking for ways to reduce my symptoms. I believe making small changes over time will eventually lead to big results. For me, it is an evolving path.

Has anything helped your symptoms? Please share in the comments!

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Comments

  1. Samantha says:

    Hey there! I have a couple things to say regarding your post and what I have gone through-
    #1 when it gets cold everything gets worse for me. More pain and a ton more fatigue. Once it hits 65/70 everything gets more tolerable and when I can sit in the sun and tan (I’m a beach bunny, have been my whole life) I instantly have more energy and my mood lightens!
    2. Last spring I got terrible foot pain and it was also called plantar fasciitis, but it was more in the balls of my feet (before the toes at the joints between the toe and the ball.) it took 3 months of physical therapy 3x a week to manage it and a lot of time off my feet. Now I’m still all but pain free besides when the trigger points in my foot muscle decide to act up.
    I just found out I’m very sensitive to gluten so I’ve been trying to go 100% gluten free. For some reason I only get sick if I eat gluten with breakfast. Weird, huh? I know it should help with energy but I’ve only gotten to a week without it totally. How long did you go before you felt a difference, I need some motivation! I’m also curious about if you decided that the warm weather does help you feel better.
    I just read your newest post about Lyme Disease and wow, I wanna get tested also. Gonna do some research!!

    • Donna Gregory/FedUpwithFatigue.com says:

      1. I’ll be doing a post probably next week on Lyme and how people w/ fibro can go through the process of getting tested and ruling it out. That post should be helpful for your research.
      2. I usually do see a reduction in symptoms when the weather warms, but haven’t had that this year yet. It’s been a cooler than normal spring and also very rainy, so maybe that’s why I’m still having a rough time of it. It’s been pretty miserable since January.
      3. I ended up finding out that I was misdiagnosed w/ plantar fasciitis. I actually have small fiber neuropathy in my feet and there’s nothing they can do to help it other than prescribe Lyrica or a couple of other drugs – I can’t take any of them due to side effects. So I’ve been trying different topical products to see if anything works. So far, magnesium lotion works the best to get rid of the burning and tingling.
      4. It took about 3 weeks until I noticed a big change in how I felt after going gluten free. Like you, I was “cheating” about once a week and allowing myself to have a meal containing gluten. My doctor told me I was just slowing down my progress b/c that isn’t enough time for your body to clear all of the gluten so you can see a difference. Maybe just challenge yourself to 30 days. I had a few false starts before I was able to get consistent with it. I’m getting ready to start 30 days of cutting dairy to see if that makes a difference in pain levels.

  2. Denise says:

    This was a very encouraging post to hear that there is some hope for less pain and more sleep! I hope this is not too personal of a question but would you be able to tell us what the fees are for this doctor’s program?

  3. I was also getting increased pain during the winter months, but have almost no background pain at all after practicing visualization to bombard the areas of my brain that habitually light up with pain. If you go to Neuroplastix.com you will find a lot of information about changing the way your brain responds and the pathways that are automatically signalling pain. Dr Moskowitz has a workbook (some of it is on the website) that leads you through the pain process and how to change it. I have very little pain now. I still get pain if I overdo it but I am dramatically better. I takes several week/months of practice to get full relief but it is worth it.

    • Donna Gregory/FedUpwithFatigue.com says:

      That’s awesome news! I will definitely check out the site you recommended.

  4. Hey Donna, sorry to hear you have stalled in your recovery. If it helps you in anyway I want to tell you that the same happened to me back in October. I felt as though I had been stuck for months. For me it was a case of taking a step back before I could move forward again. I wrote about that time here: http://februarystars.co.uk/2015/10/fibromyalgia-re-evaluating-pacing/

    The good news is that it I did start to move forwards again. So I just wanted to share this with you to give you some hope you’ll get back on the right path again because I know I questioned “what if this is as far as I will go?”

    Also this post I wrote reflecting back on the situation: http://februarystars.co.uk/2016/02/are-you-trying-too-hard-to-get-better/

    Sorry to be dropping links but I would be here all day if I was to write it all in the comments 🙂

    • Donna Gregory/FedUpwithFatigue.com says:

      Thanks for the links. I’ll check them out. It’s good to be reminded that I’m not the only one who has gone through this.

  5. maureen benak says:

    l have found that ice is very helpful for pain. I ice my legs before bed to stop RLS pain.

  6. Hi, I even wrote the weather network and told them they need to call me for their forecasts of any kind of low pressure systems coming through in a 60 mile radius!! Pain is incredible, starts in feet and ends in my hair roots those days. Winter has always been bad, but so is fall, and spring, and summer for that matter!
    Trying to be content and having a relationship with God has helped me bear the pain. He allows this and it is for our benefit, so I pray I’ll get the message he’s sending me! Isaiah 41:10 “Fear not for I am with you, I will strengthen you, help you and uphold you with My victorious right hand!” Great blessing!!

  7. Gudrun says:

    I’ve been in a similar situation and I’m doing similar things to try to get better. Exercising more, walking or swimming (we have geothermal pools here which are great) and meditating. I found a good mediation app and trying to make it a regular thing. I’ve been trying a paleo diet but need to be more consistent. LDN has also helped me a great deal and maybe I need to up my dose a bit. I’m going to check out the other things you mentioned, thanks!

  8. I have the same foot issues that you do. I find that the copper fit compression socks really help! I came across a homeopathic fibro morning foot lotion. It has citrus essential oils, as well as black pepper. I really like it! When the restlessness in my feet gets really bad, I rely on a Rx gel called Voltaren. It is a diclofenac gel. They treated me with lidocaine injection that hurt like nothing else I have ever felt, but they offered very little relief!
    I have to say, restarting your meditation/yoga routine will bring you more relief than you know! I hope you get back into it well. I have been on Paroxetine for 16 years ago & I must say it has done wonders in helping me calm the confused, extra busy swirl of thoughts in my brain. Just a suggestion. The 5HTP combo you used caused me more pain with a shaky feeling, so that was out really quick.
    I love all the changes you have made! To be as healthy as we can be before treatments begin is a definate plus! Careful not to overdo your walking. Too much exercise has been shown to be worse on us! Irritation of the nerves does us no good!
    Best of luck in your endeavors! I hope you find the best relief!!

    • Donna Gregory/FedUpwithFatigue.com says:

      Hi Amy, lots of good ideas here. Do you mind sharing links to the copper fit socks and homeopathic lotion that you mentioned?

  9. Hi Donna,
    I absolutely love your blog :). I have had fibro for 33 years now – 24 years I didn’t know what it was. I live in Namibia Africa. I make my own tincture cannabis oil and actually grow the stuff illegally in my garden. The CDB oil is from the female plant, which has to grow in the vicinity of male plants. The three things that have made a big difference has been low dose lithium, LDN and cannabis oil. The cannabis oil doesn’t take away my pain, but lets me sleep very well. LDN also helps with my sleep. Two nights ago I took 2 LDN by mistake (should have been the Melatonin – fibro fog) and I experienced the worst pain ever the next day. Was it the 2 x LDN – we never know :(. Today I am feeling great. Keep up the good work.

    • Donna Gregory/FedUpwithFatigue.com says:

      Thank you for your kind words. I didn’t know that about the female vs. male plants. That’s interesting. Hoping the LDN/cannabis oil combo will help me as well. 🙂

  10. Regina Cole says:

    I went on a gluten and 95% dairy free diet about a month ago and I am starting to have less pain. Of course the weather is improving as well. Like you I think the warmer months will make me feel better. I just worry that I will fall into a slump again next winter. I have been on Cymbalta but once increased to 60mg in Jan I felt 10x worse and after having severe pain all of Feb. I changed my diet. My PCP wanted me on Savella and but the copay is too expensive, he also wanted to add Nortryptiline(sp.?) to help with migraines and sleep but my rheumatologist is concerned with adding that to Cymbalta so I asked to decrease back to 30mg anyway due to fatigue and am still awaiting on the nortyptiline…No one will ever realize what a never ending battle fibromyalgia is until they live with it like we do.

    • Donna Gregory/FedUpwithFatigue.com says:

      Yes, it is a battle and we’re constantly tweaking our battle strategy. Hoping for better days for you and me…

  11. Thank you for sharing your story, I am at my end of the rope with all doctors can not get any relief at all. I am so stressed out and in pain don’t know where to turn any more. I tried for disability a few years ago was turned down. Had to return to work to pay the bills. I had to change my type of work, I used to bring home $2800.00 a month now I make 1050.00 a month. My life has changed so much and I try new things all the time. I have thought about medical marijuana, don’t know where to start with this. I keep trying every day. I am on my second fibromyalgia study and keep trying different things.

  12. Have you tried walking in the pool? I have been walking in the pool every other day, as tolerated, for a few years. Helps my pain and helps me sleep better! Also strengthened my legs and improved my balance!

  13. Donna, I love your posts 🙂 sorry to hear you’re in so much pain. I too walk, I will walk in the pool if my knees are too sore for normal walking and then soak in the family spa with the toddler (bliss). I have found yoga and meditation to be dually useful – body and mental stuff. I do guided meditation and it tends to buy me time off my body, therefore my pain. I have found the Energy Revitalisation Formula which has been great, high levels of the vitamins we need plus amino acids. I do know what it is to have pain the medicine won’t touch, that’s an ongoing battle. I’d like to try LDN when we’ve had our second (last!) Baby. So much to try after finished with that stuff!

    • Donna Gregory/FedUpwithFatigue.com says:

      I’ve used the Energy Revitalization Formula before and it seems to work pretty well, especially for fatigue/energy. I like a lot of Dr. Teitelbaum’s suggestions.

      LDN helps so many people!!!! Hope you’re able to try it if/when the time is right. I’m a big fan of it and I’m sure some of my subscribers get tired of me mentioning it.

  14. Hi Donna,
    Nearly 17 years ago I was in such pain, I could barely move, let alone work, look after myself or my home. I was desperate and had tried anything and everything I could find, both medical and holistic.Still the pains increased until, scared to death. I was thinking about going to a nursing home to die.
    Then an uncle suggested the beautiful wellness work of Joy of Healing wwwjoyofhealing.com Thanks to them I have been in remission, both pain and prescription free for nearly 16 years. I tell my story of my return to wellness on my website jkomanchuk.com I wish you great success whatever you try. No one should have to endure this painful, chronic, debilitating illness. Love and blessings, Janet

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