"But Exercise Makes Me Feel Worse"

"Exercise improves your pain threshold,” says Trent Nessler, PT, DPT, MPT, a vice president with Champion Sports Medicine in Birmingham, Ala. “With chronic pain, your pain threshold drops -- in other words, it takes less pain to make you feel more uncomfortable. With cardiovascular, strengthening, and flexibility exercise, you can improve that pain threshold.”

“Exercise improves your pain threshold”  

Lets think about that for a minute. 

Ok minutes up!

Who wouldnt want to feel just a bit better if they could just from getting a little exercise? 

The first thing you think is "when I exercise I feel worse". 

The next thing you think is "I am so sick of people telling me to exercise!"

(Its ok, I dont get offended)

But you have to realize the only reason people say it all the time is because generally its true. NOT always, but generally.  (I'm not talking about those who think exercise and a good nights sleep will cure you!) Just as changing your diet "generally" helps. I always point out that I am never ever a one size fits all person. I don't like blanket statements because I am smart, experienced and open enough to know that not everything works the same for everyone. 

There is such a thing as exercise intolerance. 

Impaired oxidative phosphorylation not only causes muscle fatigue but also muscle cramping with or without tenderness, or a feeling of extreme heaviness in the muscles. These symptoms are especially severe in those muscle groups being used, and patients often complain of discomfort in the legs or even muscle spasms.The discomfort may be felt immediately following the activity or later on, waking up the patient from sleep. Following more prolonged or intensive activity, the pain or heaviness can persist into the next day(s) despite rest. A subset of patients has pain associated with elevations of CK and intensive exercise can lead to frank myoglobinuria; there may also be associated lactic acidemia (DiMauro, 1999).

With that said of course if you are going to hurt more you are not going to want to do it. And it takes a special determination to do it anyway knowing what lies ahead. One of the most common statements you hear from a Fibromyalgia/ME/CFS patient is  "I'll pay for it later"

Its part of our permanent vocabulary. But lets put this in perspective.

You drink foul tasting cough medicine because you know it will help your coughing. 

You take antibiotics when you dont like prescriptions because it will help your infection.

You spend $500 dollars on a brake job because you know it will save your life. 

You do so many things as a parent that "hurt", because you are trying to shape, protect and teach your child.

Something we are very guilty of is doing too much because we dont like to say "no" to others. We KNOW its going to hurt, but we do it anyway. We just decide to "pay for it later".

Well, a permanent part of my vocabulary is "you are in pain anyway". You are in pain anyway so why no make it count for something. Why not endure just a little more pain now, to prevent even greater pain down the road? I don't say that off the cuff, I don't think "if I can do it you can do it" and  I don't think its easy. 

BUT..aside from the abundance of articles, studies and "opinions", you do experience this yourself that....

The less you move, the more it hurts. The more it hurts the less you move.

 So it becomes a self fulfilling prophecy. It hurts so bad you stop for a while and when you try again you want to die because it nearly kills you. And that's real pain, not an excuse to avoid exercise. 

The first "exercise' you should do is with your fingers! Do some research. Look on the internet, ask questions in support groups, read blogs and see what types of exercises and modalities seems to have the best results.  Make a list and then rate them in order of effectiveness. 

#1 Would be the most common, popular or least painful to incorporate. #2 Would be the next most common answer. 

Example:

1. stretching

2. walking

3.yoga 

(certain types, not the twist in a pretzel type!) 

etc....

Then, call the doctor and make an appointment to discuss the best way to go about getting some exercise. Bring your list and your research. DON'T FEEL FOOLISH. Most times coming armed with information will make them take serious, and provide specific answers. Don't let them tell you "go get a trainer", or "just start walking". That's not a plan. 

A plan is a detailed proposal for doing or achieving something, OR an intention or decision about what one is going to do. You need to decide what to try first, at what intensity level and how often. It might be to even get a referral to a physical therapist or exercise physiologist to get the proper advice and program.

For example, If you decide to walk you shouldn't just walk 2 miles after having done little to no exercise. You could cause a flare and/other reactions. Graduated walking is best.  Decide with the doctor based on your condition how much and how far. Starting with only 10 minutes (any pace) 3 times week for 3 weeks. Then try to increase it to 15 minutes or just try walking a little faster.Then 4 times a week for 3 weeks (or simply increase to 15 minutes still 3 times a week), and so on. If it does not agree with you you will know right away. Maybe you have to cut back to 2 days, walk slower, or move on to the next thing on your list.  

If you chose yoga, start with only one class in a week. Wait and see how your body responds for the next few days. (Try looking on Meetup , facebook,  or local papers, gyms and studios for a free class in your area before you commit to the cost of a full session in case its not for you. A lot of studios also offer a drop in rate to you can try just one class) Its also not a bad idea to talk to the instructor ahead of time via phone or email and make them aware of your medical issues and what your goal is. They will be able to give extra instructions for your benefit, provide blocks or straps for you to modify some of the common moves so they do not cause you great discomfort and make sure you are in the right class, or tell you which one to try.  In my experience, Hatha, Svaroopa and Restorative are the top most effective types for Fibromyalgia and whole body pain related issues. Especially for beginners. 

The key is to find something that works for you. Don't judge  yourself or compare yourself to the others, especially "healthy" people around you. Each person has their own challenges, progresses at their own level and are motivated by different reasons. I beg of you to keep trying. Just keep trying and don't get discouraged by setbacks. 

I actually took that word out of my Rolodex because it has too much of a negative connotation. It's not a setback, its simply a communication from your body. Just as a dog has to bark or a baby has to cry to communicate, your body has no voice. It has to tell you when you have pushed it too hard somehow doesn't it? Its just a message to "slow down', pace yourself and in some cases when you seem to get no feedback, its actually saying "hey that wasn't so bad! you can probably do that again!"

1. • tention or decision about what one is going to do.

Matthew Jones, researcher at the University of New South Wales who led this study   said “the results remind us that the longer we stick with an exercise program, the less physically discomfiting it will feel, even if we increase our efforts ... The brain begins to accept that we are tougher than it had thought, and it allows us to continue longer, although the pain itself has not lessened.” (A less technical article that translates the study can be found here.)

*This is not to say you will be healed, that you won't or don't need additional therapies or medications. Exercise it is just an additional tool for your arsenal to help combat pain. Always consult your doctor before starting any exercise program. 

The Secret to Joint Pain Relief-Exercise

A Beginners Guide to 8 Major Types of Yoga
Yoga Diciplines- Different types of Yoga
Relieving Pain Through Exercise-Not Medicaion

Susan G Komen 3Day in Philly 2014

WOW!! Where do I begin?!      

What an experience. Last year I thought it was the greatest experience I ever had, and partly thought I was just doe eyed in the face of my first 3Day, but NO. After my second, I can truly say it's the greatest experience you will ever have. I was not hesitant at all about doing this again at all. I did worry there would be rain because it caused me so many blisters the first time, ICK, but there's nothing you can do. Just prepare the best you can. I was alone. And planning on driving down the night before and staying the Sunday after at a hotel before I drove home. The host hotel ended up costing too much (approx 200$ a night!!) so that was out. $ for the hotel, $ for long term parking, and $ to get the shuttle back to my car after the walk...plus incidentals..I wasn't going to go.

 Then I connected with someone who was also walking alone and felt I really had to find a way to go. My husband reminded me how many things I have done and what I can accomplish, both when ill and when healthy, and suggested I drive down Thursday night midnight..and go straight to the walk. Also to just drive home afterwards. I thought he was crazy at first but then I was excited. It was another challenge for on top of the 3day itself so I was up for it!

My walking buddy said "NO WAY". She found someone on the 3day message board looking to split a room with someone so we connected, decided to share the room just for Thursday night, and I would still drive home after. Weight off my shoulders!

So prep for the 3 day in regards to fibro and pain management/prevention: 

ALL my vitamins, and supplements. (I felt like a pill addict but better safe than sorry!) For the extended use of vital energy and nutrients it is very important to take what I normally do.

My anxiety med. My anti-depressant.

Compression knee and ankle sleeves and compression socks. To prevent and manage known spots that are prone to weakness and pain, and for recovery at the end of the day and overnight as well if needed.

 Grabber toe and hand warming patches. For the cold intolerance. This time of year the morning typically starts out very chilly and  slowly warms to very hot. With cold intolerance issues I had to make sure to nip that in the bud before the pain set in or I would pay for it dearly. Also sleeping on the floor i may have needed the heat for my back. (Turned out not to need those for anything thankfully!)

I tried to pack as little as I needed to so the suitcase would not be so heavy because of my back. We have help with it getting transported from place to place but still have a great deal of lugging around to do. 

Also I took my small Simple Hydration water bottle so I would not have to carry one. Life saver. I forget I have it its so lightweight and handy.

Driving: 4.5 hours drive time. 5 hours total because I made sure to stop after 1 1/2 hours, twice, to stretch, walk around, use the bathroom, get gas and grab a tea. Thank heaven for Teavana on the highway!! WHAT!?! Love it!!

My back hurt, my knees hurt, I fidgeted a lot to alleviate it, but I disguised it very well as "dancing" in my seat to the radio. I'm sure people who saw me thought I was auditioning for dance comp right there in the car. But there's something very exhilarating about blasting music and singing your brains out alone in the car.

I met with Ruth (the woman who SO incredibly generous to offer her room to share! God bless kind people!) in the lobby, when I got there. We talked, got settled, then later met my walking buddy in the lobby after she got there. We chatted, decided to go back and do the introductions with Ruth and eventually we all  ended up at Millers. We got to know each other a little better over dinner and planned on our meeting the morning. I used some time at the end of the day to go through my things more thoroughly in an effort to take even less but it did not really work out. Woopsy! I met June again in her room for a little more late night chit chat and then went to bed.

I did not sleep well without my comfy foam mattress but sleep is sporadic at home anyway. That morning I was up and ready and in the lobby making sure I found some sustenance. While on the AIP I knew food would be somewhat of an issue so I made sure I doubled up on the sausage and banana at the hotel because everything else was a no no. I don't want to get into a diary of the minute by minute of the entire morning (or the walk for that matter) but I will say that I did not get through opening ceremonies without shedding a few tears. I found another person I connected with by email, as did June so where I started as one..we became 5. It was wonderful (maybe Karma) that everyone was great and we got along. There's a lot of talking, laughing and sharing of stories wen you walk 20 miles together!

ME and June

Then there were 4!

June, myself, Sara and Ruth

Then there were 5!!!

Amy, Sara, Ruth, myself and June

We ended as a rockstar team of 6!!!!

Myself, Ruth and Ben, Sara and June. Amy already left, poor kid her blisters were pretty bad.

Jump to Fibro management: Aleve every 4 hours. The tag line says "all day relief" but for me it's exactly that..just a line. I get maybe 5 hours, but it sure does help while it's working. My vitamins and scrips at lunch and dinner. Nuun  once in the morning and in the afternoon. And a couple sports beans in between. 

Plain water and no other drinks at all the entire day.. I avoided all food that would cause me a problem!! I said not to all chips, treats, crackers, string cheese, cookies and most of the lunch food. These things are part of the AMAZING things provided for the walkers, and I was happy to see them there for everyone else. Susan G Komen has a top notch operation. And in addition there many many local businesses, shops and residents that had tables and coolers out for the walkers. Water, candy, cupcakes, crackers, fruit, even freeze pops! The city was amazing.

 

I did have to say "no thanks" to almost everything but it made the few things I ate all the more tasty. I had to peel out the ham or turkey or lettuce and toss the rest. A sad waste, but true. I did that both lunch days and also had banana, apple, or oranges with it because, again, nothing else was ok. I have to confess a small attempt at cheating with a Kind bar. Loved them when I ate them in the past. I took 2, ate one and an hour later I had cramps and gas so bad it hurt to walk. I kept a great face and faked it.  Lesson learned. I behaved the rest of the time. OK OK, another confession. Coffee..HAD to have coffee I mean my GOSH I'm walking 60 miles for crying out loud! Really?  BUT with that said, no cream/milk and I actually took my coconut sugar with me and used it so that was a win.

Breakfast and dinners same deal with the food. The spread was ample (wish I took pictures) but I had to have just meat and salad, fruit and veggies. Bacon!! Bonus!! I am a bacon freak so I had to go up for 2nds, and 3rds....Everything looked good but I felt so amazing with my routine I was not that tempted to stray from the program because I knew if it sent me into any pain Id be doomed for the rest of the walk. 

#totallyworthit 

Some people said what I have already heard a million times.."what the heck can you eat?" "what about nuts?" "what about the cheese?" I like explaining AIP to people. I use myself as an example of how changing your food and adding any exercise you can change so much of how your body responds to many different conditions. I see a lot of people agree and respond with positive feedback so I hope I am spreading some awareness. Also giving a better example of how people with Fibromyalgia, CFS, MS, and chronic pain from other conditions can still live and be active and enjoy life in between the really craptastic days and months and even years we can hit with.  

A view of the city

Local school children cheering us on!!

The Mayor of  "Bra Street"

You all know what this is!!

Back to pain management! In addition to everything already listed, I used the magnesium after dinner to help with the absorption of my vitamins during my recovery time all night. I elevated my feet up on top of my suitcase during all my down time in the tent. I also used the compression socks  and knee sleeve from the time I got out of the shower and all night. I stretched everything A LOT and massaged my calves and hamstrings. I did shin strengtheners and foot exercise. 

I also did a lot of these for my lower back

At the end of the 2 nights the music, personal stories, Sheri P and Youth Corp were amazing to see and hear, but it was loud. For ME it was like shotgun decibel loud. My eras were ringing and things were getting muffled. I had to walk all the way to the other side of the room to talk or hear and it seemed I hadnt moved away from it all. That disappointed me a little that the hyperacusis wouldn't allow me to enjoy more of the festivities at night. Eventually I went to the other room for more downtime in the tent. I could feel my head was trying to star throbbing from the noise and decided "better safe than sorry".

                                           

If you prepare well, and take the time to set up your environment so you have the best possible outcome, you can accomplish and enjoy  more than if you do not prepare. 

I have in the past prepared very well, but still did not take the time to stretch or do the other things I should have, and I have suffered for it. You MUST know you are important and take the time. It matters. Every little bit of prevention or relief does a body good!! It seems daunting and time consuming but life really can be more enjoyable when you do it.  

Sara, June and I

I walked so fast I came in alone..a little anticlimactic!

When all was said and done, I came in 49 on Saturday and 59 on Sunday. I was feeling great. I even ran a little during the last 6 miles on Saturday because rain was predicted and I knew walking in the rain would give me blisters. The blisters nearly took me out last year so I wanted to avoid that at all costs. 

Its was not about how fast I went even though I like to go fast, I really just wanted to meet this challenge head on and tell fibro to "suck it". And I did!! I felt great and I loved every minute of it! I did miss out on some additional bonding with the rest of the gang since we ended up split into groups, but I was on a mission!

Ben (on the right) with his nephew who came to support him.

We picked up another walker Ben and ended up breaking up in teams of 2 all walking at different paces. I know the next time I will slow myself down a bit and hang out and enjoy talking about life more. I don't know how long my body will allow such things, so for now I will enjoy the connections I have mae, be thankful of the money I raise and be proud of the people I know who have survived and continue to fight this awful cancer.

.  

Sara, myself, Ben, June and Ruth (Missing: Amy)

On a side note in keeping with pain management information...It was very emotional. Laughing and crying, joy and relief and excitement were all energy suckers. It was especially overwhelming when the crowd dispersed after closing ceremonies. Everyone went their separate ways and I was left standing there alone. I had to get my suitcase, get on the bus and wait to get back to my car. It was depressing and sad to leave the new friends I just made, wondering if I would ever see them again. It drained the last  bits of energy I had left in me, almost more than the walking did. After I got home I had to do more of the same. Rest with my feet up, compression gear on and stretch and massage as much as possible. Drinking a lot of water, and getting potassium, protein and continuing all my vitamins and meds.

Its not done when your done walking. Just like aftercare from a surgery or injury, you need to maintain your healthy routine for proper healing. But I was extremely tired. So tired. Like walking zombie tired and for about 4 days it was all I could do to keep myself upright. I was getting in bed at 8 and sleeping like a dead person all night. I dont know if it was recovery, that I used up everything god gave me to make it through the walk, depression, or all of the above, But I was tired and grouchy. None was cooking for me, my friends were gone and I wasn't surrounded by droves of happy people wearing pink ribbons. 

I had to jump back into school buses, walking the dog and dance classes and it was...well...not as wonderful as what I  just felt for those 4 days. It was hard to shift gears emotionally and mentally and you have to be ready for that as well. You need to a plan in place which I did not. This was the first time I did a 3Day so far from home AND alone.

Other than having some time alone, or time surrounded by friends, piggybacking it on a vacation, or meeting with your therapist right away, I have no other suggestions at this point in time. 

I have just stayed in contact with my first walking buddy June almost daily and that has helped a lot. But a week and half later now and I still want to cry thinking about how awful it felt after it was over. 

Lord don't ask my why Im posting THIS terrible picture but as I share so much in the sake of education and information ...you must see it. You can see it in my face. I am am just so tired, disheveled, drained, and completely spent from the weekend. It all hit me when I sat on the bus to get back to my car.

Pretty depressing bus ride

Just a few more pictures from the weekend

Sixers center Nerlens Noel
Funny story that we were here at this particular moment!!

Wedding party running "The Rocky Stairs"

Infused water station

                         

 

 

The Thinker!

 William Penn on top of City Hall