Fibro Friday - Fibro is a pain ihe ... everywhere Part 2

 Some people can do more than others and gentle workouts can be very beneficial (we’ll talk more about that later). I just want to warn you that stressing your muscles can cause a very nasty response – and if you have any of the other associated disorders they may be triggered by the flare as well. Think about that dragon. It’s okay (and even good to do gentle workouts) but if you push it too far, you’ll wake the beast and face its fiery wrath.

Pain is one of the most talked about and problematic symptoms of fibro. One of these problems is how to treat the pain. I can’t count how many people have been discounted because they were in genuine pain and found it difficult to find relief. Fibro is cyclical in nature (I’m stressed so I don’t feel well, which increases the stress on my body, so I may feel worse, and that causes stress – and so on). The longer you struggle to find a treatment plan, the more serious your pain can get and the more problems you may have. Despite this difficulty, insurance concerns in a lot of places are causing physicians to put tighter controls on even the non-narcotic pain medications that are used to treat fibro.

            There isn’t one right treatment regimen for everyone with fibro. It’s important to do your homework on the medications available and their side effects as well as how they interact with anything else you may be taking. I was given a prescription for a medication that had a potentially deadly interaction by one doctor and only realized it after I started taking it. I became physically ill. When I notified the doctor and asked for a substitute, the doctor prescribed a second medication with the same interaction. This time I was smarter and had looked up the medication first. When I contacted the office and told them my concerns, I was told I wasn’t a doctor and shouldn’t be second guessing him. He was my specialist. I called my family practice doctor and explained the situation to him. He agreed I shouldn’t be on the meds. I ended up firing the specialist.

            It took a lot of work for me to find the balance of medications I have now. I don’t think it’s perfect, but when I compare how I manage and feel to how I was before, the improvement is remarkable. I think it takes a lot of patience from both you and your doctor. It’s also important to have realistic expectations.  No one has discovered a cure for Fibro (or any of the associated disorders) as of this writing. We need to be looking for improvement and management, not a miracle cure.

            There are also non-medication routes you can take to offer relief from pain. Some people experience better results than others. Many of these methods don’t have the clinical trials or safety regulations that protect consumers from abuse. Still, there are a lot of non-traditional remedies that can be helpful. I’ll share some of these in a later chapter. Whatever you decide to do, make sure you discuss it all with a doctor you trust. Then keep that doctor informed of any changes you make. Some vitamins and supplements can interact with medications (or cause problems with certain health conditions – like greater risk of bleeding, or raising blood pressure), so they’ll need to have an updated list of what you’re taking to avoid any problems. You should also discuss physical therapy, massage, chiropractic therapy, acupuncture, and anything similar in case it could aggravate an old injury and just to make sure that your doctor is fully aware of everything in case something goes wrong (or right). He or she will probably be thrilled that you’re trying methods that don’t involve prescriptions to manage your pain.

Cat Intro - Esther

 

This gorgeous girl is Esther.  She's my miracle.  She was rescued from under our local courthouse.  She evaded capture for a couple weeks and was pretty sick because of it. Her mother was nowhere to be found and she had serious heart problems as well as minor wounds. She couldn't maintain her body temperature. She wouldn't eat and didn't move much at all.  My vet suggested euthanasia.  

I was already in love - and willing to try anything so he gave me a referral to K-STATE Veterinarians.  The good news was she had gained weight (round the clock syringe feedings every 2 hours). The bad news was she had congestive heart failure probably due to malnutrition.  Her heart was in such bad shape they didn't offer any guarantees. They got her on a couple different medications and she improved dramatically.  

Suddenly she was eating on her own, playing with another kitten rescued two weeks earlier from under the courthouse, and purring.  We sent a video to the heart doctor and he was shocked at her improvement.  A few months later she didn't need the medication anymore and her heart was totally normal. 

She's a completely healthy cat today.  She is very sweet and mischievous. Her story and sweet personality are a constant inspiration to me.  

Fibro Friday - Fibro - a pain in the ... everywhere

 

            Sometimes I think I never really understood pain until Fibromyalgia.It’s especially fun to describe it to doctors or your friends and family. I was on a facebook page for people with fibromyalgia and other disorders Facebook - But You Don't Look Sick and one of the ladies shared that she wished her pain would stay in one place. I could totally relate to that! I remember trying to explain my pain to a doctor the first time and telling him it was varying – sharp at times, achy at others, and that it often traveled. He looked at me like I had claimed to be Elvis Presley back from the dead.

Not one to quit easily, I tried pulling out my bag of writer tricks. I told him to imagine a picture of lightning. A photograph captures features we can’t normally see or focus on when we only catch a glimpse during a storm. Most photos show lots of “arms” or branches shooting off the main bolt. My pain is intense for a moment in one spot and then moves to another, then another – like a bolt of lightning traveling through my body. In case you’re wondering, my doctor still saw me trying to perform Blue Suede Shoes.

Okay - so then I would move on the the pain that feels deep - like it's in your bones. I initially thought it was some sort of early onset arthritis - but my doctors assure me my bones are fine and it's actually the muscle and nerves causing my pain. Sometimes I still could swear someone has taken a corkscrew to my bones. 

            Then I’d try to explain the sensitive skin. That one is so much fun. Fibro affects each person differently so you may not have had problems with this, but I know quite a few who have. Sometimes it can feel as if you’ve gotten the worse sunburn in your life. It stings and clothing hurts when it brushes across it. Everyone I’ve talked to has only had this in certain areas of their body and there are no physical marks or redness on their skin. Another delightful way this can show itself is to make it feel as if you’re bruised when nothing has happened. My especially fun combo is that I tend to have problems with the back of one of my thighs (only one - don’t ask me why) and I have IBS so I end up spending, um, unfortunate amounts of time sitting on toilets. TMI? Sorry.

            This whole skin sensitivity truly adds a lot to the romance department though. I know, the normal “tenderness” and honest to goodness pain we all feel can kill a romantic mood faster than skunk spray. We’ve all been there. There are times though when it feels as if our own skin is turning against us. My poor husband is a serious cuddler. I love him so much and wish I could return the sentiment. Unfortunately, a lot of the time his squeezes and caresses feel more like cuffs and clobbers. That isn’t helpful for setting the mood.

            Even when you’re trying to do something positive and healthful it can backfire. Let me confess—one of my “dirty” words is exercise. I know it’s supposed to be good for you, but I’ll bet most fibro patients have experienced a flare from it. If you aren’t familiar with the term “flare,” it’s used to describe a time when you’re symptoms are much worse than they normally are. It’s like the slow drip of our normal “faucet” of pain has been replaced by a fire hose. Some of my worst flares have come from trying to work out. The problem comes because workouts are supposed to be good for us, but any stress on your body can cause a flare. So, if you stress your muscles too much … flare.

            I remember my first workout flare. I was struggling with my weight and dieting just wasn’t working. I’d been active most of my life. Army training wasn’t a joke and I’d done some pretty serious home workouts as well. I knew about sore muscles and I’d put up with the pain of fibro so far. I figured I could handle it (I can hear you laughing). I could barely move for over a week. This went way beyond normal workout pain. Being about as smart as a rock, I tried again a couple weeks later. It doesn’t take a rocket scientist to figure out I ended up not wanting to move or have anything touch me for days – again. It didn’t make sense to keep it up because I couldn’t make any progress if I was bedridden for that long after each workout. It was like someone had beaten me from head to toe, plus every other disorder I had acted up as well.

            

Doctors - Fibro

 

One of the most important decisions you can make related to Fibromyalgia is your doctor. Most people I know were directed by their normal doctors to Rhuemotologists or pain center doctors. I have seen both. I also saw a neurologist when I was still seeking a diagnosis and had some strange symptoms (especially a tremor) that they thought may be due to a neurological problem.

The neurologist was less than helpful. I was in a flare at the time (so bad that I had pulled my news to my chest in the car and cried all the way to his office). The tremor was worse when I was tired or stressed out and it didn't show up until almost the end of our appointment. It was the only thing he was interested in - he ignored all my other complaints. His diagnosis and expert advice? I was getting older and "it all goes downhill after the age of 18." I was 28 years old at the time. 

Then I saw a Rhuematologist that did a tenderpoint exam and diagnosed me with one of the worst cases of Fibromyalgia he had ever seen. I was relieved to have an answer and did a ton of research when I got home. He was a very nice man - and I believe he tried to help. He put me on medication. The problem was he ignored my medical chart and gave me medicines that interacted with other prescriptions I was taking -- and also ignored allergies listed on my chart. I had a couple very bad reactions before I realized what was happening and asked my primary care doctor to take over management of the symptoms of Fibromyalgia.

The pain management doctor told me Fibromyalgia pain was all "in my head" and due to abuse. When I asked what he meant, he told me most Fibromyalgia patients were victims of child or sexual abuse whether they would admit it or not - and their symptoms were psychological and not physical. Seriously?

It may take some trial and error to find a doctor who listens and you can trust. It's very important though. Some suggestions I have for making the most out of an appointment are:

• Make a list of any questions or concerns you have. Leave space to jot down notes on the answers given as well. When you're in the office, it can be hard to remember everything -- and it may take another 6 months or a year before you're seen again - so you don't want to forget anything.
• Make sure you share any supplements you're trying with the doctor. Some supplements interact with medications making them not work - or even have a bad reaction. 
• Note any helpful things you've tried. It may lead the doctor to another medication or activity that could be even more helpful. 
• If you have any new negative side effects or symptoms (even if you think it's unrelated to Fibromyalgia) share them. 
• If the doctor is prescribing a new medication, make a point of asking if this will interact with any medications you are already taking - and any side effects or allergic reactions you should be on the lookout for. Just asking will probably cause them to take a second look at your chart and could avoid any mistakes.
• Look up those new medications for yourself - and/or ask the pharmacist questions. 

Also - if your doctor ignores you, makes mistakes with medications, never has time for questions, etc., find a new doctor. You need someone you can trust fighting beside you.

Take care of yourselves - you're worth it.

Cat Intro - Faith

You have no idea how hard it is to find pictures of Faith's pretty face! She is nearly always cuddling with Thomas - and upside down.  We make a lot of jokes about how regal and dignified she is. lol

We got her to be a companion for Thomas. When we went to the shelter the kittens were all crying and scratching at us through the bars. Then there was Faith. She didn't cry - just a couple normal meows. She rubbed up against the cage and invited pets - but didn't try to grab or scratch us. Her behavior was so different from the other kittens that I worried she was sick or something.

We were told she took a fall and may have had a broken leg. They had not done xrays or anything. I felt so bad for her that she was the one we picked and we took her to the vet before going home. Her leg was fine. The vet said maybe she had pulled a muscle or sprained something - but no broken legs and she was walking fine.

She likes to have "conversations" with us. She has a loud and raspy meow. We joke that she must be a closet smoker.  She is showing her age a bit more than Thomas. She never really was a zoomer - but she has definately slowed down and her movements seem a bit stiff every now and then. Her labs showed she's still healthy and we hope we have her and Thomas both for many years to come.

Fibromyalgia - The dragon

This picture is an item sold on Amazon: Sleeping Dragon Figure

When I started writing my book one of the things I noticed was a lot of people were very depressed and mad a themselves. When I talked to them about it, I noticed they often internalized Fibromyalgia as part of themselves. They would say "my Fibro" has killed my relationship or "my Fibro" made me lose my job,  etc.. Some went even further - saying their body had betrayed them and how much they hated it. Believe me, I could relate.

What I suggested was that they see it more like something that was a part of their environment -- not a part of themselves or their body. You see - how can we strengthen and protect something we hate? If we see Fibromyalgia as a part of our body - then our body becomes the enemy. Our body has to be important to us - and something we appreciate and try to make better. Hating it is self destructive.

Instead, try to imagine Fibromyalgia as a dragon. We live with this dragon. We have yet to find an escape from it - so we try to find a way to avoid serious injury. The dragon is the enemy. The dragon is to be respected and even feared. Sometimes the dragon sleeps -- and then we feel better, safer. So we try hard to make it sleep - and to keep it asleep.

Those are the things we do to keep Fibromyalgia in check. Getting enough sleep, stretching, not overdoing chores or workouts.... When we have a flare, that means the dragon woke up and is terrorizing us. What can we do then to quiet him? Maybe a soak in a warm tub with salts and oils that help stress relief, taking our meds, etc.

I hope today your dragon is sleeping peacefully.

Good News

It can be really depressing to watch the news these days. I don't know about you - but I have been really wanting some positive - encouraging news.

I read an old copy of Reader's Digest and it was listing cities in all 50 states - highlighting good things. So I skimmed until I found my state (Kansas) and looked at what was listed.

It was really wonderful because it wasn't just a "nice" program. A woman and her son both struggled with addiction to opioids. Her son lost his battle. She overcame and turned that horrible experience and loss into a positive by donating her house to help others who are struggling.

Now her house not only provides shelter and help to women - but those women also reach out and give to others who are in need. It's a great story and the impact is amazing. It's called Cedar House and here is their website where you can read more about it: The Cedar House

It just takes a little light to drive away the darkness. Look for the light and have a great day!