Heating things up!

So today has been a bad day. I have pain but its more the tightness, stiffness and weakness in my arms and legs... mostly legs, hips and buttocks to be specific. It started last night at work. I could barely walk up and down the stairs to my office at work. By the time i got to the top I thought i would collapse. If anyone has ever had the unfortunate experience of having shin splints it was kind of similar to that feeling but in my entire legs, hips and lower back. Needless to say I spent most of last night at work sitting at the end of the concession counter ordering my awesome staff around. I think they are beginning to understand when i'm having a bad day and how to treat me. After work i went to check on my best girl friend LL and make sure she was doing ok since she just got out of the hospital herself. of course ice cream was a necessary part of this visit. it make anything better. More in a post to come about my obsessive love of ice cream.

Anywho, after i had only been at her house a short while I could barely stand the pain anymore, and i was even wearing my TENS unit at the time which is supposed to block pain ( a review on this is coming soon too). I hugged LL and petted Turkey and went hobbling out the door to my car. I joke with liz that i was headed home to make love to my heating pad. That moment is when i realized that one of the main things i rely on to sooth me on a daily basis is moist heat. I have multiple heating pads, warming blankets, microwaveable heating devices and some that heat using a chemical reaction.. Im going to give you some brief  insight into my favorites, focusing mainly on items that are reusable and not disposable.

THE TRADITIONAL HEATING PAD
 - this is my go to item, and my longest time friend. The one i have has served me well for a very long time and im a little afraid when it bites the dust, I wont be able to find another one as good. I have tried some of these newer heating pads and they just dont get hot enough. this thing gives off some serious heat. Ive never even had a need for the high setting. I need that deep penetrating heat to get any relief. These new wimpy little heating pads just don't cut it. Mine looks about like the one below and was my one true love until I discovered a heating pad that my room mate had lying around in our storage room. Its a king size version of mine and is long enough to be able to heat my entire back/neck/ glutes. I saw  some in the store today that have straps and bands on the king size ones so that you can position them and they wont slide off. Im interested to try one of those in the future. Both of these are great for daily use by themselves or with pain relieving creams and rubs. I also like to use mine before and after i do stretches to help me get and stay loose.  I have even been known to take my heating pad in my car with me on long drives so keep my pain down. I have a power converter in my car that comes in very handy for things like this!

There are many variations on this basic heating pad that include specialty designs for lower back, neck ,shoulder, knees etc. I purchased one of these at RiteAid when my lower back started giving me trouble. I  actually like the one I bought quite a bit, the only problem is it never got hot enough for me personally. It is made by a company called Dunlap and s marketed under the product line KAZ. The actually have a broad selection of heating pads. Check them out here. The one i bought is pictured above. It has stretchy wrap around arms with Velcro so that you ca get it in just the right place to sooth your pain.The Velcro has a generous fabric edge around it so that it wont scratch your skin. The fabric is soft and since it doesn't get super hot you can use it under clothes. the plug adapter placement is a little strange especially if you want to use it while sitting instead of laying down. This back wrap also works great for my abdomen when i have have bad menstrual cramps. the nice part is with the velcro i can wear it while laying in bed and it stays in place. It also has a cord release so that if you do need to get up you can unhook yourself without having to take the heating device off completely.

So all of these electric heating devices are great when you are at home, but what about at work? or car (if you don't have a power converter) or the gym or airplane or anywhere else for that matter. I have purchased many a product to deal with the pain of sitting for long hours and not being able to get comfortable.
My first attempt at portable heat was a "Microwavable Comfort Wrap" basically fleece tube filled with rice and lavender made by Earth Therapeutics. This wrap is cozy and soft and smells good but  its down fall is that it has to be microwaved and doesn't really hold heat for an extended period of time ( about 1 hour). But most people, hotels, etc have microwaves so you can get it reheated pretty easily. The positive is that it also can be chilled in the freezer to provide cooling relief. The other nice part is that you can make one of these at home with ease and save yourself the $10+ bucks at the drugstore. -here are some instructions : Sewing required you can also make these using fabric glue, or hot glue instead if you are not a sewer.

My next foray into portable heat came when i was at a Helen Brett jewelry show a little over a year ago. Among the myriad of vendors was a guy with a simple set up: he has some hot plates and some pots with boiling water. As i watched him pull these little warming pads out of the water i became intrigued especially when he told me that the boiling wasnt how they got hot, it was how you reset them to their liquid state so they can be reused. The heat is created by a chemical reaction. Here is a video of how the pads work. They are  reusable over 500 times and stay warm for hours. They heat to 130 degrees in about 60 seconds. They come in all shapes and sized for whatever aches you. I love mine and it works great. the only down fall is that it has to be boiled to be reset so you can use it again, this fact isn't very convenient when you are traveling, the hotel receptionist might look at you funny when you ask to go into the kitchen and use some boiling water. Also they aren't exactly cheap. I paid over $30 for my neck/shoulder one pictured in the video. But they are beginning to pop with better deals online so shop around

 

Today on my way to work in excruciating pain, I hobbled into Walmart to try and find something to help with my leg and lower back pain. I was desperate for some moist heat to relieve the tightness and unfortunately as i mentioned above my gel pack needed to be boiled and i was too lazy. So i bought some tiger balm to go along with my Arnica gel, and  I bought two homeopathic treatments for leg cramps/ leg pain and restless legs that are made by a company called Hylands. I'm actually amazed at the expanding offerings Walmart has begun to carry as far as alternative and homeopathic/ natural remedies. Ill give a full review once I've taken the entire bottle. But at the moment it seems to be helping my legs. I'm not in as much pain as I was earlier, so thats always a plus.

This emergency trip to Walmart is where my most recent contact with portable heat occurred. I was standing in the isle of the pharmacy part of Walmart, barely able to bend down looking at all of the options. Buying another heating pad seemed sooo tempting at the moment but the reality was i count stay plugged in all night at work no matter how much pain I was in. So i grabbed a mist heat back wrap and decided I'd settle for having to microwave my treatments all night. Surprisingly this product is not a settle. Its fantastic, and a say that as i am currently still sitting here at work wearing it. There is no buyers remorse in this purchase.

This  wrap is made by a company called Thermalon When I took the Moist Heat Back Wrap out of the package, the first thing I noticed was the fabric.it was soft but sturdy. It has channels so the material being heated stays evenly distributed. Its also can be hand washed with soap which is great as we all know easy care products are important for people with FMS. Its so easy to use it has an Ease of Use commendation by the Arthritis Foundation.

The second thing i noticed was that the tie arms had no itchy Velcro and clip or snap fasteners. you just tie it like a bath robe, so you can position it at any position and tightness you like or not tie it at all. It allows for freedom of movement and again ease of use. I have a feeling this is going to be my new best friend at work.

If you have found other great heat products, Id love to hear about them. please leave me comments and share links to where we can find them! i have a feeling the arena of moist heat is going to continue to develop in some amazing ways

Flexeril vs Soma vs Zanaflex

As of late, the majority of my pain and daily issues seems to be stemming from tremors and spasticity. Yes Spasticity is not only for awkward teenagers anymore. Spasticity also occurs in MS and cerebral palsy and several other diseases.


According to wikipedia: Spasticity is a feature of altered skeletal muscle performance in muscle tone involving hypertonia; it is also referred to as an unusual "tightness", stiffness, and/or "pull" of muscles.

Clinically spasticity is defined as velocity dependent resistance to stretch, where a lack of inhibition results in excessive contraction of the muscles, ultimately leading to hyperflexia (overly flexed joints).

Spasticity is found in conditions where the brain and/or spinal cord are damaged or fail to develop normally; these include cerebral palsy, multiple sclerosis, spinal cord injury and acquired brain injuryincluding stroke. Muscles affected in this way have many other potential features of altered performance in addition to spasticity, including muscle weakness; decreased movement control; clonus (a series of involuntary rapid muscle contractions often symptomatic of muscle over-exertion and/or muscle fatigue); exaggerated deep tendon reflexes; and decreased endurance. "

Originally when these symptoms became a major part of my illness, Dr. B sent me to see Tamara the occupational therapist. She taught me some great pain management techniques as well as some great stretching, breathing and yoga positions to help with the stiffness, soreness and pain. When my current medications and  pain management tools weren't enough to manage the ever growing tremors and pain, Dr B began adding muscle relaxers to my regiment.  Muscle relaxers such as Flexeril Soma and Zanaflex are the main treatment options for spastcity and tremors.

A couple of weeks ago, I was having a conversation with my friend CT, who was also recently diagnosed with FMS. Her doctors have been putting her through the rotating gamut of medications and she asked me about my medications. I told her i had recently been put on Zanaflex 4's in addition to my flexeril 10's. She asked about how they were different from the  somas she was on so I decided to do a little research and find out. 

Turns out I am not the first person to be curious about the differences between these three heavily prescribed medications. When I did a goggle search a myriad of forum posts on all sorts of websites came up asking about the differences, which ones people found more effective, if they can be taken together etc. I have tried to compile and simplify the ridiculous amount of information into a realistic readable comparison between these drugs that so many FMS patients take on a daily basis.

SOMA - Generically called carisoprodol. this one is the most addictive of the 3. It has a lighter sedation effect so it is often prescribed first for daytime muscle tension. This medication works by blocking the sensory impulses in the brain that trigger pain and cause the body to react by contracting to protect the injured body part. Soma muscle relaxants deliver fast relief usually within minutes. This medication comes in 250mg and 350 mg doses.   Common side effects you may experience include drowsiness, dizziness, headache, depression, blurred vision, insomnia, and hiccups. These side effects are mild and tend to go away within the first few weeks of treatment. do not quit this medication cold turkey, you will experience severe withdrawal symptoms. I skipped right over this drug from skelaxin and robaxin and went directly to flexeril. My doctor chose to skip Soma as a treatment option as she likes to limit the number of addictive medications any patient is on and I was already on several. So i have no real experience with this medication or its effects on FMS.

FLEXERIL -Also known as cyclobenzaprine.  This medication comes in 5 mg (blue) and 10 mg (yellow). It has a heavy sedation effect especially in the beginning (doesn't do anything to me now). This medication is often prescribed to be taken at night especially in the beginning to help patients sleep more comfortably. This medication works by blocking the sensory impulses in the brain that trigger pain and cause the body to react by contracting to protect the injured body part. This mediation is the most prescribed of the 3 because it has the lowest frequency for addiction. Common side effects of Flexeril include drowsiness, dizziness, fatigue, blurred vision, and/or dry mouth. These side effects are temporary and tend to go away as your body gets adjusted to the medication. I have been on this medication for almost 2 years. I started on the 5 mg at night and then moved the 5 mg twice a day, and then to the 10 mg. Now i take this medication in combination with Zanaflex as part of my treatment regimine. It helped me deal with my muscle spasm issues but never completely removed them or soothed them.

ZANAFLEX - This muscle relaxant is the most powerful currently on the market and has a heavy sedation effect. This effect is increased by narcotic pain medication, other muscle relaxants, old/ allergy medication and medications for depression. This medication is often prescribed t be taken at night especially in the beginning to help patients sleep more comfortably. This is a short acting muscle relaxant. The peak for this medication is 1-2 hours after it is taken and the medication is totally gone from the body in 3-6 hours so you need to schedule doses accordingly. Zanaflex is available in both tablets and caplets and you should not switch freely between the two as they work very differently on the body. 

Dr B had me titrate onto this medication over a 10 day period so my body could adjust to it slowly and I could see if It worked for me without it just knocking me on my butt. I assume since it is mildly addicting you would need to titrate back off of it to avoid withdrawl symptoms from going cold turkey. You may have withdrawal symptoms such as dizziness, fast heart rate, tremors, anxiety, and increased spasticity when you stop using Zanaflex after using it over a long period of time. Birth Control pills can increase the amount of zanaflex in your blood stream and cause your body to process it out more slowly, so be careful to discuss this with your doctor.  This medication comes in the following doses:

• Zanaflex 4 mg - white, round tablets
• Zanaflex 2 mg - blue capsules
• Zanaflex 4 mg - white and blue capsules
• Zanaflex 6 mg - light blue capsules with white stripe

The combination of Flexeril 10 in the morning and Zanaflex 2mg at lunch and dinner and then 4 mg at bed seems to currently be working for me at the moment. The frequency of my muscle specific spasms such as eye twitches, quad cramps and twitches and such as gone down significantly. The body tremors and hand shakes still come and go with a little less ferocity. I still have constant tightness and stiffness in pretty much all of my muscles especially my back, butt and legs. But I know there is no magic bullet. 

and of course I am not a doctor. Please consult your doctor or pharmacist before changing your medications or dosages. Id love your comments and feedback on these medications.!

Arnica - thoughts and review

I battle a myriad of side effects and difficulties associated with my FMS. One of the worst is bruising, the other is  allodynia (severe skin sensitivity). Due to the lovely daily occurrence of both of these issues, along with never ending pain and soreness,  i am constantly looking for ways to help sooth and heal not only my pain but also my skin and broken blood vessels. 

I have tried so many topical creams, supplements and types of clothing. I will be writing my thoughts and opinions on most of them, but i figured i would start with one of my favorites: Arnica 

Arnica is a herbal that is part of the sunflower family. Arnica is commonly eaten by the larvae of some butterflies and moths. Several of the species of arnica, such as Arnica montana and Arnica chamissonis, contain a compound called helenalin, a sesquiterpene lactone that is a major ingredient in anti-inflammatory preparations (used mostly for bruises). For more details about the plant itseld you can check out this post on wikipedia

My first experience with Arnica, was a product recommended to me by my pharmacist when I asked about products to help with bruising. She directed me towards the ethnic product isle, where i found this product: De la Cruz Pomada De Arnica. This product does not contain any preservatives, artficial fragrances or dyes which i liked for my senstive skin. But it does contain white petrolatum, mineral oil and parafin wax. So i would avoid it if you are sensitive to these.  I bought mine at Rite Aid but it is available from most drug stores and widely available online. The Companies website directs you ti Walgreens where it  it is $3.99.

This product is great for healing all kinds of bruises, at different stages of healing pretty much anywhere on the body. This product also contains another herbal called Balsam Peru which i have used regularly to soothe my rosacia. This is a thick salve that stays where you put it. it doesn't really absorb quickly so i wouldn't put it on if you are wearing delicate fabric clothes soon. I have used this salve to help heal bruises on my lower back and glutes from deep tissue massage, as well as the never ending bruises on my thighs, knees, shins and elbows for constantly running into to furniture and doorways.

 Yes I know the furniture doesn't move. FMS has caused me to have a bad sense of spacial awareness as well as poor balance. It is also great for chapped lips, dry elbows knees and heels. I have even used it on my chihuahuas dry skin and irritations. I have not found it to have any significant pain relieving properties. I have been through several jars of this product since it was recommended to me. I more than get my money's worth out of this product. 

The other Arnica product I just recently started using is called Arnicare by Boiron. Boiron produces over 800 homeopathic products and remedies According to their website :

"Homeopathic medicines are therapeutically active micro-doses of mineral, botanical and biological substances.They are reliable and safe drugs, therefore considered by many as an excellent first choice when self-medicating. Homeopathy has been used for more than 200 years, building a remarkable safety record and generating a great body of knowledge.

Today, homeopathy is used by millions of patients in more than 65 countries and recommended by more than 400,000 healthcare providers.". 

There are several different topicals and oral homeopathic remedies available under the Arnicare line. I have currently only tried the Arnicare Gel - part of the topicals line.  There are also a cream and an ointment available. All three products have only one active ingredient Arnica Montana. These products are parabin free and contain no artificial fragrances or dyes.  i am currently trying to locate some of their other offerings in the line. I am curious how the oral arnica treatments work

I found this Arnicare Gel at Walmart, it is part of their widening offering of natural and homeopathic products. I was a little hesitant to buy it at first as it was almost $8 for a single tube. At the time I was in pretty incredible pain (from my aggravated leg injury ranted about in the last post) so the pain won over thankfully and I bought the tube, along with some Alive vitamins (which i also really like). The reason this tube was so interesting to me is that it claimed to ease not only bruising and swelling but also pain with out the use of mentholated products which can sometimes over sensitize irritate my very sensitive skin  and allodynia issues.

I have tried several other non menthol pain creams and this one beats them all out. This gel does in fact help give relief to my pain without the menthol tingle and significantly helps reduce the appearance of bruises in a very short period of time.   Someone should really market it to teenagers to treat hickies. You could make a killing!

There are a few significant differences I have found between these two products. The salve comes in a great tub/jar but it can be hard in cold weather and you have to kind of work to smear it around. The Arnicare comes in a metal tube with a plastic cap. It comes out quickly and easily so be careful not to squeeze out too much. The metal tube with prevent you from being able to put it back and a little goes a long way. Also be careful with how you carry or store your tube. I just tossed mine in my bottomless pit purse and im already beginning to see edge areas of the metal tube that might spring a leak at any second.

I am sure there are lots of other arnica products out there for me to try so i will keep posting updates and giving my feed back as I put them through their passes. If you have suggestions for other products please share in the comments. I'm always looking for relief. Also remember, FMS effects everyone differently so my experience may be totally different than yours. Don't be discouraged and keep trying until you find things that bring you comfort.

Just a little venting

SO im working a double today and i am dearly paying for being on my feet for 12 hours and for having the luxury of  an entire Saturday to myself. Some how i even managed to hurt myself doing absolutely nothing. ugh how exactly do I re- strain/sprain/tweak/aggravate  my hip/quad/glute/SI just by walking to the bathroom at work. Seriously FML. It hurts to sit, walk, stand and do pretty much anything else. Oh and the outside of my shins/ lower calves hurt too. oh what a day! i even took extra meds and have been doing a serious amount of stretching but nothing helps!

The Spoon Theory and grasping what FMS is like

Though the spoon theory was originally written about having lupus it accurately describes what a lot of people with "invisible diseases" go through on a daily basis. Often people with neurological illnesses or internal illnesses dont necessarily manifest their sickness on the outside. This means to the average person they dont "look sick" even though they may be suffering on a moment by moment basis every day. I often have to explain to people that I can no longer do a lot of the things that i used to do before I got diagnosed, such as go for a run, play sports, go out drinking all night in smoky bars, staying up late and getting up early, the list goes on and on. I pay dearly for each choice I make every day and I must choose wisely or I will pay dearly, My days take planning and I dont cope well any longer with changes in plans or quick invites to go do something at the last minute. I cant just hop out of bed and go meet friends for breakfast on a sunday morning. I need to know the day before so i can get plenty of rest and get up in time to go through my hour + long ritual of getting ready and getting moving before I get out the door. The spoon theory has become my easy simple way of sharing with I go through with people. So..... here it is for you to read at your leisure.

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/

Prescriptions

So its been a bit of a rough day already and its only 9:20. So much for enjoying my impromptu day off. I really wonder sometimes if doctors have even the slightest clue what they do to us when they take their sweet damn time refilling our prescriptions or calling in new ones. The slightest fluxuations in our medication levels, or missing even one dose of something can send someone with Fms into a pain flare for days or even weeks. I seriously sometimes wonder if doctors know any more than the general public about our disease or how things really effect us. Well im going to back to spending my morning trying to sleep and writhing in achey pain. Hopefully the bacon wrapped oysters I am supposed to enjoy this evening with my bestie Liz will make it all better. At least my tummy and my soul will be happy. I've been craving some girl times!

Fms and the double taxation of being a woman.

So I was going to wake up this morning and write baby making part 2. That plan went right out the window when the wrath of eve came down upon me. Sometimes I really hate the fact that im a woman with Fms. Its pretty twisted sense of humor the universe has to afflict the disease of Fms on a mostly female population who already has to deal with the monthly emotional and physical pain of menstruation. Additionally most women with Fms have some sort of reproductive complication such as myself having Endomitriosis. Endo makes my cycles so painful I often can't get out of bed without crying. When you slap this on top of my continuous Fms pain issues it makes for a pretty crappy week in the middle of every month.

I guess the really twisted part is that until today, my cycle had been relatively calm and demure. I should have know better than to think it would actually last. Especially when I was supposed to go to the dentist and then out on a date tonight. Im still going to the dentist,  but I postponed the date. I guess im just a glutton for punishment. Thankfully the gentlemen is just that and totally understood.

On a side note not one of the compression tank-tops I bough yesterday fit right. Now I have to return them all. I have found I really like these "shaper" tops as they givr mild relief to some of my back and abdominal pain and help stop some of the mild pain and stress anxiety I can get. Plus they keep me looking shapely and I actually find they make me eat less because I always feel full or as if my clothes are too tight.

Well back under the covers and to cuddle with my heating pad and the furbabies until its time for the dentist.

Making Babies

Since being diagnosed i have struggled a great deal with the idea of children, my ability to procreate, and whether or not id be able to have and adequately raise children while trying to cope with the daily challenges that come with FMS. I finally decided to have a discussion with my Ob-gyn at my annual visit about the possibilities of this ever happening, He said is was definitely possible, especially since my surgery in 2008 got most of my endomitriosis and the lupron and birth control had kept it in check. The only problem would be that i would basically need to get off of every single medication I was on that made my daily function manageable and kept my pain in check (sort of). Dr. H and I decided that we would do a test run and see if i could manage weening off of one drug at a time in very small steps to see if my body could even handle the possibility of this happening. We decided to start with Effexor since this is both one of the hardest drugs to get off of and could be the most harmful to a fetus. Dr. H wrote me a tapering schedule and the prescription and sent me on my way. He also mentioned that under no circumstance was I to stop taking my BC until my system was clean and safe. I managed to titrate all the way down to half a dose before my pain became a struggle. I have now been at this level for a couple of weeks to see if staying here would make it any easier to deal with. It hasn't.  

I had a conversation with my mom last week about all of this and she agreed with me that it might actually be in my own physical, emotional and spiritual benefit to not have a child and to focus on taking the best care of myself as I can and to try and be the healthiest happiest person I can be. The real possibility is that having a baby would ultimately make my medical condition worse and cause me to be in more pain from stress and lack of sleep. This state would not make for the best parenting or home environment for a growing child or a family in general..Its a hard pill to swallow as I have worked with children in some facet for most of my life and I've dreamed about having a family since i could dream. But in the end it is likely the best for everyone involved I guess my children are just going to have to be furry and four legged! Plus if I get well at some point later on in my life I can always adopt a child in need and give them a great loving home!