Suffering in silence

I know that I have mentioned my pain on the blog before… but this week has been a tremendous drain on me.  I have packed boxes every day, and every night I’ve gone to bed with swollen wrists, elbows, and ankles. Every morning I wake up with a head and neck ache. On a lot of mornings I crawl to the bathroom.

I have Fibromyalgia,  which is classified as a chronic pain and fatigue disorder. The problem is, they don’t know what causes it – and they don’t have a cure. There are some medications that work, but they’re very, very expensive. One bottle of the drug Celexa is $344 per month without insurance. I was spending a total of $300 a month, WITH insurance for all the medications I was taking. Of course, this is nothing compared to the cocktail I was taking when the problem first cropped up back in late 2001.

It was a normal every day kind of day – I worked in the Men’s department at a major retail chain. I was the “assistant” department manager, and I loved my job. One morning I started experiencing severe pain in my shoulder and wrists while trying to arrange ties on the rack. I thought nothing of it – just that maybe I had pulled something. By lunch time my entire left arm had gone numb and was hanging limply at my side. By the time I got home from work, I couldn’t move my arm without screaming, and my husband took me to the emergency room. They did x-rays that showed nothing, proclaimed it a pulled muscle and sent me home with Flexeril to relax the muscles and Darvocet for pain. I worked like this for weeks until the next serious bout shook me – unable to move BOTH arms, my best friend took my to our family doctor at lunch one afternoon. He did a series of tests, and suggested slipped discs in the neck as the issue and ordered an MRI.

The MRI showed damage to C5, C6, and C7 the discs between them bulging. They stared physical therapy. I was put in traction to release the pressure on the discs and nerves in my neck – things got much, much worse. Soon I was totally unable to lift either arm. My husband, who had married a relatively young, active, healthy woman – started to lose interest in taking care of me, and after only a year and a half of marriage – we divorced.

When my best friends sister came to spend the holiday with us, I had another horrible incident and couldn’t move my arms. With 10 inches of snow on the ground my best friend (to whom I am now married) took me to the hospital – again they did xrays… this time thinking Carpal Tunnel gone terribly awry. They gave me braces for both wrists and insisted I take medical leave until things started to clear up. Off to a pain management doctor to relieve some of my pain.

On my first visit to the Pain Management clinic they started me on low doses of several medications:

  • Neurontin – typically used in Epilepsy, this medication is also used to treat the pain from damaged nerves (which they thought was the problem due to my neck)
  • Amitriptyline – an “old school” anti-depressant Elavil – this drug also showed promise in treating the pain from damaged nerves.
  • Flexaril – a muscle relaxer
  • Phenergan – anti vomiting/nausea medication because all the other stuff combined made me sick.
  • Ultram – a narcotic like pain reliever… not much help…  Notice the warning below:

Seizures have occurred in some people taking tramadol (Ultram). Your risk of a seizure may be higher if you have any of these conditions:

  • a history of drug or alcohol addiction;
  • a history of epilepsy or other seizure disorder;
  • a history of head injury;
  • a metabolic disorder; or
  • if you are also taking an antidepressant, muscle relaxer, or medicine for nausea and vomiting.

Ok, so not only am I NOW taking an antidepressant, I’m taking a muscle relaxer AND a medication for nausea and vomiting – JOY! Thankfully I’ve got the neurontin to prevent seizures.

I was taking upwards of 20 pills a day, had 7 shots of steroids in my neck and still felt no relief. After a year and a half on this regimen – I stopped. They could do no more injections – the only thing that helped – without damaging (permanently) my spine. They didn’t have other medications to try, I was already on the “standard course” of treatment, and nothing new looked inspiring. I was at a dead end. Then, as suddenly as the attack came on – it receded. Within weeks of going off my meds, I started to feel better. Certainly not GREAT, but better. I was nearly pain free most days, and only experienced mild pain when I overdid things. This went on until 2007.

In 2007 I had a nasty bad bout, that put me in bed for a couple of days. When I returned to work, I visited our on-site PA. He took me in and I explained my history — all the meds, all the pain, everything I’d been through. He shook his head and started touching me in various places. With Fibro, there are nine distinct places where the pain/tenderness is almost always present. These are:

  1. Around the lower area of the neck
  2. Insertion point of the second rib
  3. Around upper part of thigh bone
  4. Middle of the knee joint
  5. Muscles connecting base of skull
  6. Muscles of the neck and upper back
  7. Muscles of the mid-back
  8. On the side of the elbow
  9. Upper and outer muscles of the buttocks

As he did his exam – I hit on all 9 points. All 9 were so tender that just touching them sent me through the ceiling. When he was done – he looked at me and said “I know what’s wrong with you… you have Fibromyalgia”. I was in shock… I had been told that it was something else so many times, that I almost couldn’t breath. I kept saying “are you sure”? He reviewed my chart with me, and showed me in black and white, how all my symptoms, including the chronic bronchitis and pneumonia all pointed to this disorder. I wanted to kiss him. So he prescribed NEW meds – Celexa for the pain and depression, klonipin for the anxiety and stiffness, and to help me sleep, and the big guns – Soma in case I got really bad. Those were locked in the medicine cabinet.

Now here I sit, four years later, in the same or worse condition than before my diagnosis. One of the worst things about all this –  having to quit all the meds cold turkey. When my company let me go – they turned off my insurance BEFORE I signed my termination papers, as is their policy with all chronic medical conditions – wouldn’t want someone to get medical treatment on the company’s dime… It was so near the end of the month that I was  nearly out of everything – thankfully I got samples for a couple of months to hold me over, and I quit my meds…

I’m so tired, and sore all the time that my motivation is slim to none. Many friends have said I should apply for disability, because with the Fibrofog, I cannot concentrate or remember anything for any length of time – this was evident even ON the meds.

I’m considering it – certainly it would help our family a lot… and with the disability I wouldn’t feel pressure to return to work right away, I could carefully go through a treatment plan to get me back on my feet and not just take any thing they thought might help… I could see a good doctor and find out alternatives to the harsh medications for my disorder… but the best thing is I could have some peace of mind, knowing that I was doing something about it…

Right now I just feel helpless, and useless some days – when I can’t seem to get out of bed, and Facebook is my only friend.

I know that this too will pass, and that things will get better – but I’m looking for the WHEN not the IF. I need to remember to use my tools -and the people around me who are willing to do the stuff I can’t anymore… and I need to stop feeling like this is all my fault for being sick. Those are the thoughts sticking to me today – how about you?


4 thoughts on “Suffering in silence

  1. Oh, I wish I could send you some pain free hours. Keep hanging in there, though I know (at least from my experience with the depression part) how difficult it can be. I’m here, reading you.

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