Sunday, November 2, 2014

What does Fibromyalgia feel like?

I was recently diagnosed with Fibromyalgia (FM) after a year of pain and negative tests for everything else from arthritis, to lupus, to multiple sclerosis.

The other day one of my coworkers asked what the pain of FM feels like.  

First, I’ve learned that everyone’s experience of FM is different so my answer is not THE ANSWER to the question conclusively, since it’s a syndrome. It’s sometimes called FMS for Fibromyalgia Syndrome. But for me, this is what I feel.

I have a constant dull headache, which sometimes worsens to the point I had five severe migraines in five days. Before FM, I rarely had headaches. Now they are my daily companion.

My back is always sore, usually an achy feeling, which moves all over my back, but is worst between my shoulder blades. Although massage or heat help somewhat, as did physio, acupuncture, chiropractic care, mostly nothing helps my backache as it’s not caused by any injury.

My muscles are stiff and tight, especially around my upper back, neck and shoulders. I take magnesium and muscle relaxants and though they help somewhat, but the muscle stiffness never completely goes away. Heat eases it somewhat.

I have stabbing pains in the front of my thighs. This is the most acute pain I experience. It happens suddenly and the pain is so intense it brings tears to my eyes (and I don’t cry). It will pass within a minute so I don’t take anything for it. When it happens I don’t touch my leg. I just wait for it to pass. The first few times it happened, before I knew it was related to FM, which I didn’t know I had, I feared the worst. But the fact that it moved around from thigh to thigh and in different areas of the thigh confused me. I knew it couldn’t be a tumour since it wasn’t localized to one area. It was a mystery, until now.

I clench my jaw in my sleep and grind my teeth. I used to sleep with my mouth open, but now my jaw is clamped shut. X-rays show wear and tear on my TMJ or tempero-mandibular joint, which is right at the base of the ear where your jaw opens. I’ve heard many people with FM also have problems with their TMJ. I now sleep with a mouth guard on my teeth, and it prevents problems.  As well I have toothaches and headaches. Jaw clenching, teeth grinding and TMJ problems are common.

My joints are stiff and movement is very slow. I feel like a sloth sometimes. I also used to sleep mostly on my left side. Now I have to sleep on my back as both hips are very tender. I will wake up sometimes and my whole pelvis, knees, ankles and shoulder joints feel like they are on fire. Burning pain is I think the worst type of pain I experience with FM, although the stabbing pains are a close second. The stabbing pains are of shorter duration. The burning pains in my bones and joints are so deep and almost throbbing in their intensity, as if the flame gets turned up or down. I take so long to turn over in bed, even a quarter turn, say from back to side, and I almost don’t want to move because it hurts even more, so I’ll often sleep for hours in the same position, which makes problems of its own. Or I’ll wake up every time I change positon, then I can’t get back to sleep, or I’ll reach over for a pain killer like Tylenol or Advil, so I can try to get back to sleep once the pain subsides.

Sleep disturbances are common as a result and people with FM have trouble getting to the deepest level of sleep. Sleep deprivation then has its own problems and it becomes a vicious cycle, with lowered pain tolerance, irritability and headaches. People with FM often wake not feeling refreshed, and instead feeling like they’ve been run over by a truck.

I also developed anemia, which then made my fatigue, headaches and shortness of breath worse. I also had mononucleosis which made my fatigue more extreme.

I was also recovering from surgery and my pain threshold was lowered. My hormonal imbalance also caused hot flashes which were severe enough to interrupt my sleep, which only added to my extreme exhaustion.

I also had problems with my balance. I almost fell several times. I always use a handrail when I take the stairs. I had also developed a limp, the cause of which was never determined.

I had heart palpitations and could hear my pulse in my ears, especially when I’d be trying to sleep. No cause was found for this either.

I also had chest and left shoulder pain, which was investigated and ruled as non-cardiac pain.

I had abdominal pains, some of which were attributed to gastritis from Naprosyn. I stopped it, of course. An abdominal ultrasound was normal, but the abdominal pain continued.

I experienced weight gain, both from some of my medications and from my decreased activity due to the pain and fatigue.

I experienced mental fogginess (sometimes called Fibro-fog). This was a problem at work (I’m an oncology nurse). I seemed to take longer to do my job and never felt like I finished on time and feared I’d make mistakes or forget something important. I dreaded going to work and just getting through each shift was a chore.

I also developed anxiety. This was new for me and very distressing. Apparently anxiety and/or depression and stress intolerance can occur with FM. I didn’t have depression but I did feel discouraged through my two years of testing without any diagnosis. I knew something was wrong, but every test was inconclusive or negative. In a strange way, I’m happy to at least have a diagnosis so I know what I’m dealing with and can try to find some treatment.

It’s hard having an illness that is so little known or understood. It’s also hard having an illness that can’t be seen. I may look well, but I’m not.

The problem with FM stems from the body’s inability to process pain signals properly. It’s not a fatal illness, and it’s not progressive (meaning it won’t worsen over time) and will not cause lasting damage to any organs. That’s the good news.

The bad news is that every case is different, it takes a long time to diagnose, mostly by ruling out other causes and the presence of pain for at least three months. It often develops after accident, illness or injury. In my case, it started a year ago after I had infectious mononucleosis. It’s still poorly understood by the medical community, difficult to treat and there’s no ‘cure’.

For one glorious month this year, I had no pain. I was on Baclofen (a muscle relaxant) and Naprosyn (an NSAID). I could work freely and didn’t feel like I was missing something. I had energy for projects at home and cleaned out cupboards and painted furniture. I couldn’t have done that before. I was so happy to be pain free. My husband came home and asked his usual, “How’s your pain?” I said, “What pain?” He was shocked.  Then the medication suddenly stopped working and the pain returned worse than before. I was so upset and frustrated. If I would have known I’d only have a month, I’d have done more.

 I felt I was falling apart and no one could tell me what was wrong with me.

My doctor told me it was possible for the medication to stop working. I also stopped the Naprosyn which caused the gastritis (inflammation of the stomach). She switched me to new medication, which took a while to find the right dose. They also caused some dizziness and not quite as good pain control.

I am trying to learn all I can about this illness and what I can do to help myself. I bought a book by Dr. Alison Bested called Hope and Help for Chronic Fatigue Syndrome and Fibromyalgia. I also joined a facebook page support group for Fibromyalgia sufferers called Fibro 360 Community | Fibromyalgia and Fatigue Centers.  All these things help to validate that I do have a real illness with real symptoms. The problem often with FM is that you begin to feel it’s all in your head.

To ask, “Where does it hurt?” is harder to answer than, “Where doesn’t it hurt?” I hurt all over.

There’s the short answer to how it feels to live with Fibromyalgia.

Terrorist Attack in Canada

October Journalling

1.     Work, although busy is manageable. I don’t feel so stressed about it anymore. Thank God!

2.     Finished painting the desk, shelves and table for my writing room.

3.     I am a Dollar store junkie. Just wanted to share that. Oh, and staffing at work is just ridiculous. We had 17 patients for two nurses. Really? Eight or nine patients each. That is just unsafe. And then for some reason, I couldn’t sleep AT ALL after my night shift even though I was so exhausted.

4.     Going out with the ladies from church to celebrate the birthday of one of them. I like this group.

5.     My co-worker’s wedding is this evening. We’ll miss church, but I’ll catch the sermon I missed on-line. Oh, technology!

6.     I don’t know why I am so sore. Since they refilled my prescription of muscle relaxants and I’m taking more, it’s like I am as stiff and sore as before. Did they give the wrong medication, or maybe a generic type that doesn’t work as well, or a placebo? I can’t figure it out. This morning I woke up at four a.m. in pain and couldn’t find a position that was comfortable, so I got up and took some Naprosyn, which is an anti-inflammatory. I tried to crochet and listen to the Bible on kindle audio. I’m so frustrated. I had pain control for only one month! So I have the chronic nerve pain syndrome, and the chronic muscle and joint pain syndrome, but how do I explain the bone pain in my pelvis and spine? Arrrgh!

7.     Work is okay, but I am worried as I am having sharp pains in my abdomen and I feel lumps in various places, which were not there before.

8.     More abdominal pain this time in my upper left side. Trying to cry in secret. Trying to stay calm as I’ll see my Doctor on Saturday. Gotta get through.

9.     Finished my last night. On my way home I had a sharp pain in my right upper abdomen and I feel a large lump over my liver. Do I wait till after Thanksgiving to deal with this or go to emerg? I would tell someone else to get it checked it right away, but will a few days make a difference?

10.    I went to my doctor and it seems the Naprosyn caused gastritis, an inflammation of the stomach, so I have to stop it. Also, the muscle relaxant stopped working, so she’s changing it to something else. Apparently that can happen. But I only had one month pain-free! Sigh. And she’s sending me for an ultrasound.

11.   Shopping for Thanksgiving dinner.

12.  I woke up early and decided to surprise my family with baked cinnamon rolls and apples. The house smells delicious.

13.  Happy Thanksgiving! My back was aching so much. If we didn’t have everyone bringing something it would have been harder. We had 3 apps, 3 mains, 3 carbs, 3 veggies and 3 desserts. A pretty complete meal, I’d say. The other downside is I started to have a panic attack but my youngest daughter knew what to do and we stopped it halfway without any meds. I only had the first one a year ago. That was scary since I didn’t know what was happening.

14.  Hard to work tonight since I haven’t been able to sleep in the day. My new meds still aren’t available at the pharmacy and the old ones are not working or stopped so my chronic pain is more acute.

15.   Mid-October already? I haven’t even planted our tulip bulbs yet. I had to stay home from work tonight. I went to bed crying and woke up crying three hours later. Just starting on the new med, not a lot of relief yet. So tired of being in pain. Thank you for attending my pity party. Complimentary tissues at the door.

16.  I stayed home from work a second night. Until these new meds start working, I’m in agony.

17.   My husband and son-in-law and brother-in-law left for their weekend fishing trip with the guys from the Soo. My eldest daughter is coming to stay with me. I had an appointment with my counsellor this morning, mostly talking about leaving church and how to work through the forgiveness process. As time goes by I feel less sad and more angry. My biggest fear is to become bitter. Also got to hear my grandbaby’s heartbeat when my daughter went for her midwife’s appointment. Sounds like a boy to me! Then we bought a few baby things and maternity clothes.

18.  Spent the day at a Bible conference with my daughter and 200 others. It was called Kingdom through Covenant with Dr. Peter Gentry. I appreciated that my daughter was willing to go there with me.

19.  My daughter came to our church today. Our men returned safely, having caught their limit of six large fish each, mostly trout.

20.  I have my abdominal and pelvic ultrasound today. If there’s no explanation for some of my symptoms, I’m going to start to wonder what is happening in my head. Results to my doctor by Friday. My husband and I started going through the worksheet on forgiveness together. This grieving process is going to take a long time.

21.  Back to work tonight. Apparently my ultrasound was normal, which is good news.

22.  Today there was a terrorist attack on Ottawa, and an unarmed reservist soldier was shot in the back while guarding the tomb of the unknown soldier at the war memorial in Ottawa. He was 24. Then the terrorist ran into the Parliament building and started shooting. He was killed by the Sergeant-at-arms. This is the second attack this week. Another soldier was intentionally run over by a car.

23.  The country seems to be reeling from the attack yesterday in Ottawa. It’s the end of our innocence.

24.   After work, I slept two hours then went to counselling. I would have liked to stand by the highway of heroes to watch as the soldier’s body went by. The situation was so sad.

25.   We attended a three hour class today at church on the basics of the gospel, done for anyone interested in church membership. Then we will get info on the church itself, see if we agree with it, then write out our testimony, meet with the elders, then we’ll present our testimony in front of the church.

26.  I missed church this morning due to pain. I searched pain clinics but it seems the wait times are measured in months. So discouraging.

27.   I need to see about changing my meds. Hard to get through my day.

28.  I’m increasing my meds until we get to a dose that works for me. Work at least, has been quiet this week. Also was given a sleeping pill so I can feel more rested. Also, finally a diagnosis. I have fibromyalgia.

29. I saw my counsellor again and we are breaking down the big pain/grief I am feeling into all the small events that made it so painful. I feel my emotional pain is decreasing, but mostly because of distance rather than time. If I had to see the people that had caused me pain, on a daily or weekly basis, it would bring it back up again. I hope to one day be able to forgive the people I feel have hurt us, even if they never ask for forgiveness. I’m learning that forgiveness is about the offended, not the offender. They may never apologize, but I don’t have to be held captive by the hurt they caused. I don’t have to become bitter.

30.   Working through the process of forgiveness has been helpful for my husband as well. We talk about what I’m learning together and verbalizing the hurts validate them. Then we can put them behind us.

31.  Happy Reformation Day! It’s sad how few people know what happened on this day in church history 497 years ago. Google October 31, 1517 and see what you find.