Dealing with the soreness

Today is an unusual day.  I’m actually home for the day.  Over the last couple of months I have been working in the shop more and continuing my job up at Turtle Bay resort at least once a week.  I haven’t sat down at my computer to write in my blog for weeks.  I’ve been prepping for the IDC which starts this weekend with the EFR-I course.

Also over the last 3 or 4 weeks my lower back has really been bothering me.  I have been trying to keep it under control and under my hat.  I don’t want to complain or let anyone know that I’m having this issue because I don’t want pity and I don’t want them to go easy on me.

We went out about 2 weeks ago and bought at new bed frame because ours didn’t have a center support and I felt like we needed that.  We have noticed an improvement in sleep quality and comfort but still, my back hurts.  More accurately, my ass hurts.

My spine is probably out of alignment but I haven’t made an appointment with my doctor, who can get it back in alignment, for several reasons.  So today that’s on my to do list.  Hopefully that will help my back.

One of the big downers of Fibromyalgia is the aching.  When I get run down I ache all over.  I have to take it easy and I make a conscious effort to do so.  It’s frustrating as hell that I have the physical strength to do things but it just hurts.  It’s never not hurt, not that I can remember.  So I guess I don’t know what “normal” is.  I can’t help but feel down when I hurt.  I just want t crawl into bed and sleep but I can’t do that.

During nursing school I learned that if a patient says they have pain then you have to believe them.  Not only that but they have the right to have that pain relieved.  So why don’t I deserve the same?  I’m exhausted and sore and all I want to do is crawl into bed.  I was telling my friend how frustrating it is that I can’t get relief.  I have the pain medication they gave me and I take it but sometimes it’s just not enough.  I would go to the clinic but there really isn’t anything they can do.  It’s so frustrating.

Pain management- all the tools in the toolshed

It’s been a rough week in my world.  I’ve been working and its physical labor.  I love what I do and its all worth it when I hit the water.  I am thankful to have had several good months of low pain levels.  The Lyrica has been doing it’s job and I had almost forgotten what it’s like to use several methods in collaboration to control the pain and stiffness. 

I think it’s important to remember that prescription medication is not going to work all by itself.  It’s also important to note that non-pharmacological treatments are beneficial to overall health.  People who suffer from chronic pain end up running out of medical interventions and because of that we often swear by other methods.   So, for those of you with chronic pain, here are the tools that I use.

1. Lyrica
2. Tramadol
3. Hyland’s Muscle Therapy
4. TENS
5. Heat and Ice alternated at 15 minute intervals
6. Yoga/Deep Breathing 
7. OMT- manipulation therapy provided by my doctor.
8. Distractions

Each one of these methods helps in a different way.  They Lyrica keeps the pain down on a good day so that I am not incapacitated as I used to be without it.  Often, when I start feeling achy it’s when I am out of the house so the tramadol can help hold off the worst of the pain until I can get home.  The TENS is used to block the pain signals to the brain.  It does this by delivering small electrical pulsed directly to the effected muscles.  The effect lasts only as long as the machine is in use though.  Heat and Ice help also to relieve the muscle tension.  While there isn’t a dramatic result to be felt, I do believe it helps over the long run in shortening a flare.  Yoga is pivotal because the deep breathing along with the stretching can work wonders.  When you stretch it forces those muscles that are balled up to stretch thereby reducing tension and pain.  OMT or Manipulation therapy is similar to chiropractic care.  But, my insurance doesn’t cover chiropractic.  But, my doctor happens to be a doctor of osteopathic medicine who can perform this.  Distraction is perhaps the single biggest tool.  As long as I am moving around, for the most part I can push the pain aside.  But, as soon as I sit down I feel it. 

I do my best to work around the pain but it’s not always possible.  Sometimes that pain wins.  Lately, I have been lax with my Yoga practice and it’s catching up with me.  I called the doctor this morning and made and appointment for OMT on the 21st.  I also left a message for my doctor and he called me back.  For the time being he gave me flexeril.  I don’t want a stronger pain medication because of the potential for dependence.  Unfortunately for me I’m allergic to Coedine and because of that my options go from tramadol to oxycodone.  The middle of the road narcotics are all off-limits due to my allergy.  There are, of course, a few other medications that can be used but I don’t really want them. 

Months ago I explored trigger point injections and was told by the doctor to “suck it up”.  I received quite a lecture and I wasn’t happy about it.  When I go see my doctor on the 21st I plan to ask him if there is another pain management doctor I can see or if he can specifically note that he wants trigger point injections. 

For now though, I have to lay low.  That’s the hardest part for me.  Not being able to do the things I want to do with my kids or not feeling well enough to cook dinner.  One thing I see now is that I have had this fibromyalgia as long as I can remember.  So I’ve gotten good at coping and compensating.  The trick is to communicate to the doctors that the pain is killing my quality of life.  I hope to do that on the 21st and also to get some relief.  But, until then the tools in my tool box with just have to do.  I just hope that I don’t get told “there is nothing else we can do” because that puts me sitting life out on the bench for longer than I would like.  But, whatever the outcome I have to take it one day at a time, hope for the best and plan for the worst.  

 

How do you explain it?

This blog has been on the back burner for a couple of months now.  I’ve been having one of those honeymoon periods where I feel really good.  Apart from some minor pain and some tight muscles in my hip I’ve been feeling good.  I have been able to go about my daily life and almost for get that I have fibromyalgia.  I’m thankful for that time. 

Unfortunately, the pain comes in cycles and it’s not predictable.  Most would say that I “overdid it” but really I have been doing the same things and more for weeks and I’ve been fine.  So the timing is anyone’s guess. 

I tell people about my “disease” freely and it’s not to get sympathy.  It may come up in diving when a diver has a medical condition that they have to overcome.  Sometimes people ask me how I like my BCD because it’s lighter weight and a back inflate which differs from the mainstream.  They are used to seeing a certain style and they ask what I like about it and I often tell them why I chose it. 

You may have noticed that I put the word disease in quotations.  I did this because I often don’t know what to call it.  To me, the word disease implies that I have the flu and I will eventually be cured or it will eventually disable or even kill me.  But that’s not the right word because fibromyalgia isn’t curable but neither is it necessarily progressive and it doesn’t really effect the actually strength I have.  I have struggled hard to accept this but it’s not going away and I have the strength it’s just going to hurt like hell sometimes. 

I sometimes use the word disorder which is probably the closest word to correct.  Even that isn’t perfect though.  Disorder often implies a more chronic condition but it still implies that it can be fixed.  The term “chronic condition” applies I suppose but I don’t like that one either.  Honestly, I think there just isn’t a good word to use that doesn’t trigger a pity response.  So, most often I tell people “I can let it beat me or I can take control and live my life”.  That’s what I really strive for, to live my life on my terms as much as humanly possible. 

As much as I try there are days when the fibro wins.  A few months ago I noticed a strange pain in my feet after I dive.  I didn’t think much of it at first.  The pain wasn’t bad enough to stop me and, unlike my fibro pain, wasn’t constant.  After about 3-4 weeks, about the time I started Divemaster, I went in and had an x-ray just to confirm that nothing was broken.  After about 4 more weeks the pain was still there so I went back to the doctor.  Even a chronic pain patient knows that if it was nothing it wouldn’t be going on this long.  She listened carefully to me and I asked if it could be a stress fracture.  She seemed to agree that was likely since stress fractures are often missed on x-ray and don’t show up until 6-8 weeks later if at all.  She she ordered a bone scan.

I had a bone scan last week because I have been having pain in my right foot for about 2-3 months. It seems to get better for a while and I keep thinking it’s getting better. The I go and do something and aggravate it and it hurts again. In fact, each time I aggravate it it’s a little more painful than that last time.

I finally got tired of waiting for it to heal and went in to the doctor’s office. Two months ago I had an x-ray that didn’t show anything.  Come to find out, that’s rather typical of a stress fracture. Stress fractures are like a crack in the bone.  They often don’t break the bone completely in two and there are different schools of thought on how to treat it depending on the severity of the injury. 

Sometimes they put the effected limb in a soft cast or boot and sometimes they even use a plaster cast.  I feel lucky that the injury, while painful, doesn’t require either of the above. 

The bone scan consisted of getting an injection of contrast and then coming in 4 hours later and having the scan done.  The scan looks at the bones and detect the small cracks that are seen with stress fractures that x-ray can’ detect.  The whole scan took about 20 minutes.

After a week of waiting I talked to the doctor’s office and go the results.  I’ve already said that I have a stress fracture and it really wasn’t a surprise to me.  I was surprised that I was told to rest, no running or jogging but swimming is ok.  So, I can keep diving unless diving aggravates the pain. 

Unfortunately, I think that I got the injury from diving and carrying all that heavy gear and rolling an ankle a few months ago.  Since diving is my passion these days, this stinks!   I really didn’t get any idea how long it will take to heal from the nurse.  Now it’s a matter of what I am willing to sacrifice.  Not running and resting a doable for the most part.  Not diving is not really doable.  I’m hoping that I can still dive whenever I can carve out the time.  I purchased and ace wrap to wear daily to minimize the movement of the foot on a day-to-day basis.  Sometimes I’m not sure why I even bothered to get it checked out since the diagnosis basically does nothing for me.  

More recently, I’m having a flare that I, as usual, have been pushing through for a couple of weeks now.  I started to feel the pain in my neck and shoulders where it always settles about 2 maybe 3 weeks ago.  It starts out as just a little pain at the end of the day.  Slowly it creeps in at different times of day and becomes more frequent.  I’ve been seeing, or rather feeling, the signs, but I’ve been ignoring them.  I wanted to pretend it wasn’t a flare but just a little bump in the road.  That worked for a while but gradually it’s gotten to a point where its pretty much a constant pain and stiffness. 

I can go about the day-to-day, put it aside for a time, but it now refuses to be ignored.  I went to work today and I was talking about a night dive with some of the people with the shop.  I left the shop and told them I would play it by ear and see what was going on at home.  By the time I made it home I knew I was sore.  It wasn’t until I sat down though that I really felt it.  I am definitely in some sort of flare.  I hope and I pray that I don’t get to where I was last fall. 

You know, pain is the body’s way of telling you to knock it off.  The problem is that I live in some degree of pain every day so my body is basically telling me this every day.  Has been for as long as I can remember. 

The difference between today and last fall is that I know what’s causing my pain and I know how to ease it.  So, tonight I stayed home because, to be perfectly frank, I hurt like hell.  My plan now…lay low as much as I can this weekend.  Heat, TENS, pain meds.  I also need to set and appointment with my provider for OMT and that may help.  I had hoped to put that off until the kids were back in school but I guess that won’t work. 

It’s times like now that I wonder what my chances are at ever having a decent career since I will always have these flares at random times and most employers wouldn’t really say I’m sick.  I don’t know what happens as I age.  Do the flares get worse?  Do they come more frequently?  Generally speaking, most things to get worse and more frequent as we age and our body declines after the age of 40.  Geez I’m almost there. 

Right now though, I just want my nice soft bed.

Random Pains

Anyone with fibromyalgia will likely tell you one of the more frustrating parts of the disease is not knowing where it will pop up next.  Most people have “trigger” sites that are present all the time and we have likely adapted to this.  The hard ones are the ones that pop up out of nowhere. 

Some people say that people with fibromyalgia take longer to recover from a muscle strain.  Eventually, we do recover.  The tricky part is knowing if you are injured yourself or just caused a pain flare.  Doctors tell us to be active in order to combat fibromyalgia.  The endorphins released during exercise do us good.   Sometimes, though, exercise causes more injury. 

The last couple weeks I have been very active.  I’ve been diving 3 or 4 times a week.  I noticed over a month ago that I have a sore wrist that gets irritated when I bend it forward and back.  I noticed this shortly after I had gotten caught in some surf where I was knocked down and had to try to use that arm to help me get up.  So, I chalked it up to a strain and kept moving.  Around that same time I also noticed some pain in the arch of my foot like it was bruised.  Once again I didn’t worry too much about it since I still seemed to have strength. 

Last weekend, though, I was out diving when I almost turned one of my ankles on the same side and fell to the ground.  Since then my foot, ankle, knee and wrist are all sore.  I have an appointment next week and my doctor might order some tests then. 

My dilemma is when do I tell my doctor these things.  If I had gone in when this started he would have said it was a strain and would go away.  Now he’s going to ask my why I waited so long.  I don’t want to waste his time or mine and I know that they probably won’t find anything wrong with me that can be detected on an x-ray or even an MRI.  6 months ago now the Rhuematologist said that people can have “fleas and lice” meaning you can have fibromyalgia and also have a legitimate injury.  But I’m constantly walking a tight rope between being a whiner and waiting longer than I should. 

I’ve decided there is no easy answer.  When I get sick of it not getting any better, then I will make and appointment I guess.  Right now all I know is that it aches and burns and it’s causing me pain.  I don’t know if they will find any inflammation or abnormality but I suppose I need to report then ongoing issue so that we can rule out injury. 

Don’t you just love when it’s “just the fibro”; meaning there isn’t anything that can be fixed it’s just going to hurt and you have to live with it.  Sometimes I really hate this disease!

Muscle Strains and Fibro

A person with fibromyalgia takes longer to heal from a muscle strain injury.  This explains a few things for me.  If you’ve been reading my other blog then you know I’ve been out doing a ton of physical activity lately. 

A few weeks ago I noticed that my wrist hurts when I bend it a certain direction.  No big deal I figured I pulled something when I was out hiking or diving.  I have given it about 3-4 weeks to heal now and it’s still there.  So the question becomes when to call the doctor. 

The answer to that depends on your pain level and loss of function.  For example if the injury causes pain every time you move then you would need to call the doctor right away because it’s effecting your day-to-day living.  Unfortunately, it isn’t that cut and dried for me.  I have had the injury for about 3-4 weeks and it only bothers me when I put weight on that arm.  For example when I sit on the ground and recline back on my arms or when I am climbing something.  To complicate matters further I don’t have any loss of strength and the discomfort seems to be a minor annoyance. 

However, I’m also educated enough to know that a person can have more than one problem.  So I could have a real injury and maybe it’s not just part of the fibromyalgia.  So, today after much debate I’ve decided to make an appointment to see my doctor.  He’s a osteopath and very good at getting an idea of what is going on through physical exam techniques and then confirming his suspicions with diagnostics.  Unfortunately his next available appointment is 2 weeks away.  So I have to call again in the AM for a same day appointment. 

There aren’t any real hard and fast rules when dealing with muscle strain and fibro.  We just tend to take longer to bounce back from things.  The only sensible thing to do it follow you’re gut.  If the injury is severely painful see your doctor right away.  If you have loss of function see your doctor right away.  If the pain causes numbness, burning or tingling see your doctor right away.  If it feels like the muscle has been bruised and it hurts just a little when you move then you may be better off waiting a little bit, as I did.  But, as always, this blog is just a chronicle of my experiences and what I have learned.  It’s not a substitute for medical advice.  So if you have a muscle strain please seek medical attention before it turns into something larger.  You never know you could have a broken bone or something more severe.

Angry

WARNING:  The following entry is based on my own observations and nothing is sugar-coated. 

I went to a fibromyalgia class today at Tripler.  I’m not sure what reaction they are going for, but it only served to piss me off.  They talk about grieving the things we’ve lost and about finding new things we can do.  If you ask me that’s the easy way out.  Maybe anger is inspiration in this case, but I’m angry because…

• People keep suggesting that I mourn the loss of things and I’m not ready to mourn the loss of anything!  Most people said they had to mourn the loss of their career.  I’m sorry but perhaps I need to redefine the scope of my career but I’m not giving anything up. 
• I am being sent to classes to teach me time management, pacing, nutrition, sleep, relaxation etc.  Do they really think these are new concepts?
• Sitting in a room full of people who share the same diagnosis of chronic pain and comparing notes does nothing to move me closer to getting my life back on track. 
• If I have to listen to another shrink tell me they “understand” I’m going scream.  Unless of course they can prove to me that they have walked this path. 
• So far the classes that I have attended put the abstract concepts of coping and adapting but no actual way to put this into practice in my day-to-day life.
• When I try to make appointments to talk to someone I am told that I have to wait 3 weeks.  In 3 weeks I will have forgotten what the hell I wanted to talk to someone about. 
• The idea that there is some sort of treatment plan is a joke.  They just give you freakin classes and tell you to just “deal with it”
• I can’t stand to think that I spent years in school only to have it all taken away by this. 

Yes, I’m grappling with this diagnosis and it’s implications.  I need someone to talk to I know that.  I don’t want to bring this home with me.  I want to get back to being the mom that I want to be.  I was raised to believe that when you are sick or in pain you seek help from a medical professional.  So it’s hard to hear that I need to retrain my brain to feel pain differently.  I’m feeling like no one has any real idea of how to help me get through this.  My support system is several thousand miles away and not exactly accessible.  THIS SUCKS!

I get defensive when people suggest that I reconsider my career.  It’s hard enough to get a nursing career off the ground in this economy.  I worry I’ll never get it started.  I haven’t even gotten any calls about the CNA jobs that I have applied to.  Yeah I know I have to be more glass half full.  Maybe tomorow.

Neurology

Today was my follow-up with the Neurologist.  The resident or intern came in first and I told her what the pain feels like and I told her about the headaches.  She told me to do a bunch of stuff like touch my nose and push and pull this way or that.  She listened to my lungs and said the doctor would be in.  More of the same from the doctor himself. 

The medical community has aparently changed to a hands off approach.  I have been to several doctors now and only 1 has ever even laid a hand on me to ask me where I feel the pain.  Why is that?  If they did they would be able to feel the exact tender spots and maybe they could figure out a way to target the pain.  They offered me something for the headaches but I can’t take anything that will impair my ability to drive or take care of the boys and I don’t really like that crap anyway. 

It would be so nice to have a few hours of relief.  Just a few hours where the pain is lessened to a tollerable level.  I don’t think people comprehend what its like to live life in pain.  I wonder if this were them would they tollerate it as well as I am.  Fibromyalgia is so hard to explain.  The pain moves day to day, hour to hour and even minute to minute sometimes.  No one really understands.  Not unless they have experienced it for themselves.  Some days I just want to crawl back in bed, other days I feel well enough to get through the day.  I have worked hard at Yoga to strengthen my muscles and I am seeing results.  At least my arms and legs are stronger. Now all I need is some way to work the knots out of my back.  Something I can do at home that will help those muscles to untie themselves.

What does it feel like?

Describing pain to your doctor can be confusing and difficult for you both.  I had my doctor tell me he never thought of fibromyalgia because I told him my right shoulder hurt and nothing else.  That wasn’t true though.  Getting the doctor to grasp what it like is a difficult task, especially when the pain moves around from day-to-day. 

So how do you describe the pain?  First thing they want to know is severity on the 1-10 scale.  That’s an easy one.  Then they want to know the quality, what does it feel like.  This is extremely subjective because there are innumerable ways to describe the quality of pain.  There’s burning, stabbing, tearing, aching, sharp pain, dull pain, pain that’s made worse with movement, pain that’s made better with movement.  And forget describing it to the people in your life.  That’s twice as hard. 

So what does fibro feel like?  It’s different each day.  There are good days and bad days and somewhere in between days.  I try to stretching in funny ways at random times to find relief.  The pain severity and quality can change hour by hour.  Some days it feels like someone kicked me and it’s sore as heck other days it burns and spasms.  Some days I just want to lie in bed.  But none of this makes any sense to someone who hasn’t experienced the pain.  I find that people seem to think that I ‘m exaggerating or even making things up to get attention.  I assure you that’s not the case.  In fact, there are many people with fibro that have given up on medical treatment because they were make to feel like a pest or made to feel like less of a person because they are ill. 

Fibromyalgia is a multifaceted syndrome.  It ties to depression, which ties to mood, which affects the pain.  It’s the same with sleep.  People with fibro need to avoid stress, get plenty of rest and do what they can on the days they can.  There is help, there is hope but it takes time to feel better. 

If you’re reading this and you have fibro, stay strong.  If you know someone with fibro give them a little break.  This thing affects every major system in the body in some way.  They aren’t making it up, the pain is real and yes, it does move around.  It also goes away for an hour and then comes back.  We can do everything you can do it just might take more time for us to recover.  Be patient, none of us wants to have this but those of us that do have to adjust.  We have to mourn the loss of our former selves and accept that limitations are needed in order to maintain a quality of life.  I can still do that hike because I have the physical strength but I’ll be sorry later.  So maybe I will stay at the bottom while you climb the waterfall because if I do I’ll be hurting for days.  I have to know my limits and stay within them. 

Today I feel like I was kicked by a mule!