Call Me the Clay

Many people have never heard of Fibromyalgia.  Some have heard of it but have no idea of what it is.  Some people know that it means you have chronic pain – but that is all they know.  Some don’t believe it even exists….

I remember the day my doctor finally said that he believed I have it.  Leading up to that day, I was in his office on multiple occasions with tears in my eyes telling him I was so very tired of hurting all of the time.  We tried many things.  Finally on that day, he said he hated to put this diagnosis on me because it would be like putting a label on me.  He said that many doctors still do not believe it is a ‘real’ disease/condition and therefore tend to ‘ignore’ your complaints.

However, I was somewhat relieved in simply having an answer to my problems.  It was a relief to have a name to put with the condition rather than believing I was going nuts – LOL!

My doc knows me well though – and as he predicted – I was not ready to throw in the towel and start taking prescribed meds for it.  I wanted to see what else I could do.  I was already on an anti-depressant and it wasn’t doing much.  The thought was that if one was depressed, it could bring on pain – OR that the pain was bringing on depression (chicken or the egg situation).

So he recommended several things such as massage therapy, exercise, etc.

I tried them.  Massage therapy caused more pain.  It created newer areas of pain.  Exercising seems to make me hurt more.  Not the kind of muscle pain – like a good exercise would do…..this was down deep-in-my-bones kind of pain.  I researched online to find what others were doing – and I tried various things.

Ultimately, the best solution for me is taking Luminex that I purchase through a company called Melaleuca.  It is a St. John’s Wort & Griffonia Seed Extract combo.  I’ve tried over-the-counter St. John’s Wort – and it has not worked for me, but I read that it has helped many. When I take Luminex I find that not only does much of the pain subside – but I also have clarity of mind.  Which is HUGE!

You see, when you have Fibromyalgia, you also get Fibro Fog – which is a term used for describing forgetfulness, memory loss or the lack of mental clarity with this disease/condition.  I can best describe it as when you try to recall someone’s name and you say it is ‘on the tip of your tongue’.  It feels like I know this – but can’t get the thought or memory to come to full fruition. Or you find yourself having trouble concentrating and are very forgetful. It is very, very frustrating. 

It took a while for my family to realize that I really didn’t remember things.  They would be so aggravated because ‘we already discussed it’ or ‘I already told you – don’t you remember?’.  We finally got on the same track and they understood that no, I did not remember and they were going to have to get used to reminding me.  And I’ve learned to set reminders on my calendar or set alarms on my phone for even the smallest things.

I’ve also learned my limits.  I know exactly how much energy and how many days I can go before I start suffering from major pain now.  For instance, I know that if I am out doing things after 8 hours of work – I better call it a night early to compensate for that or by the end of the week – I can barely make it through the day without being in loads of pain.  So I space my activities out to allow for more resting than normal.  I plan ahead for activities on the weekends too – I have to allow plenty of down time afterwards or I will be missing work the following week.

I have also discovered that stress is a major factor.  Once I made it through my divorce and I changed jobs – because I had been in a very high-stress position for several years – many of my symptoms went into remission.  But let something stressful pop up and I instantly feel it in my back.  My back and neck will knot up and within a day or two it will feel like it is on fire in one or two concentrated areas.  And, if left long enough without my attempting to do something to relieve it – I find that the pain often travels to different areas.

And just in case it helps someone else – I also found that when something just won’t stop hurting – such as a specific spot on my back or leg – I can take a Loofah-type back scrubber and lightly scrub the area of pain and surrounding area as well.  It is like it stimulates all of the nerve endings and therefore the area that was causing so much trouble kind of relaxes. 

So how did it all start for me?  I thought I had pulled some muscles in my back when in labor with my son because they did a double dose of epidural on me and when it came time to push – I couldn’t really feel if I was pushing or not.  So I was doing my best without feeling….and figured I over-did it because I made myself throw up in the middle of all that trying.  

Even weeks afterwards, it got to the point where it felt like my entire back was one giant muscle spasm – constantly.  To top it off, the slightest touch hurt like I was bruised.  It actually took 3 years for the muscle spasm feeling to subside.  But the bruised feeling remained.

These days I often say my ‘everything hurts’ – because most of me does hurt.  There is never a day or a moment where there is nothing hurting.  For me it is mainly my skin, muscles and joints.  If something scratches my skin – even if the skin is not broken and there is nothing visible to the eye – that spot will hurt for a day or two just as if it were an open wound.  I have an overall pain that is constant – and then there are more concentrated pains such as the burning in the muscles of my back and shoulders or random shots of pain that can be anywhere.  Sometimes I will get an electric shot of pain in the palm of my right hand for instance, and then it will quickly shoot up to my elbow and then over to my left arm or something weird like that.

Many times I can’t sleep because my entire body hurts.  There is no good way to sleep when your skin hurts – and all of that constant pain and lack of good sleep tends to make the mind weary.  I suppose that is where the Fibro Fog comes from.  My retention for things is gone.  And that is tough as I have always been a sharp-minded person.

I could go on and on – but you get the picture.  I recently told my dad that I really believe my mom (who passed away in ’08) had Fibromyalgia – but it didn’t have a name way-back-when.  My heart hurts for her in all of the pain that she was in and no one could comprehend or understand.  I remember her crying because she hurt – and nothing seemed to help.  And let’s face it – it is difficult to have sympathy for someone when you can’t see what their problem is in a physical sense.

So for those of you who have it – I’m so sorry.  And I understand completely – even if your symptoms are different than mine.  I get it. 

For those of you who do not have it – please tune in and try to have compassion for others who are suffering from this or other conditions that are not visible to the eye.  It doesn’t mean it is not real.  It doesn’t mean that we are complaining for no good reason.  We don’t need you to have the solution – trust me, we’ve been there, done that with all of our doctors and tests – but just know that we may be a little slower or need to rest a little more often in order to maintain a decent life.  Know that we want to be included – even if we can’t participate – we appreciate being remembered – at least invited.  And if we can’t make it at all – we still want to hear about it afterwards – don’t shut us out completely.  Don’t leave us lonely.  It may seem like we just want to lay around and be lazy….but that is not the case – trust me.  We just need to plan ahead even for the smallest things and we need to be able to cut out early if need be.

Thanks – and have a wonderful week!