Living with chronic pain

It was 1987.

I had just started studying at Concordia University.  I had already earned a certificate in Gerontology and worked as a personal support worker in home care.

Married 16 years, working part-time,  raising 2 children in elementary school, the typical life of suburbia…2 kids, 2 working parents, owner of a bungalow, a summer camp, catamaran (not noisy motor boat),  except we had 2 small cars and not the station wagon and 2 small dogs and not the huge canine.  It was just plain old suburbia.

I earned just enough to pay little extras, my car, my tuition, books and personal expenses.  My going back to school was a bit of a prickle, my family was somewhat inconvenienced at times.

Life was pretty good.  Summers were a nice break as school was out for Mommy and the children.  I had 4 weeks’ vacation, the children’s father had 5 weeks, so we would share the time together making 7 weeks where the children could  stay at the lake more often, with one parent always there.

I was diagnosed with osteoarthritis in my neck,  since I was 32, most probably genetic.   Doctors first said, it was a neck sprain from leaning my head forward too much for all that extra reading after a day’s work; they said, lawyers, doctors and other professionals suffered this same problem. {Well, gee! somehow that took part of the pain away to know that people with PhD’s suffered the like!…kidding of course!}   In the meantime, I have added little tiny round mirrors over the side mirrors, on both sides of my vehicle to view better, my blind spot which prevents me from turning my head too quickly…ouch!

 

…I was a court transcriber/typist at home when the children were young.  {Basically, in those days, if you wanted to earn money homebound you either had a sewing machine or a typewriter.  Remember those big boxes with a keyboard set on the top? Those were typewriters.}

I would work when the children were napping or asleep until the wee hours of the night.  It paid as much as you could put out; I got $1 a page; and it’s with those hours that I purchased my little 1984 Renaud V, 4 speed, in 1986.  It was all paid up by 1987.  Working at this job enabled me to have my own pocket money … I could afford to bring the kids to MacDonald’s {don’t you go up in arms now with how unhealthy it is to eat there. It was a fun outing for the kids after a picnic at  Fort Chambly, a long bike ride, dip in the wading pool and across the street was McD}  So all that combined, it WAS a healthy day both physically and psychologically.

 

Working as a support worker which meant some strenuous work albeit labours of love and compassion, plus all my other roles (family, community, school, academia), all came to a peak.

I am sitting in the doctor’s office and waiting for his diagnosis for the symptoms I had presented, insomnia, feeling emotionally drained, tired, and achy joints, lower back pain, upper back tension and headaches, joint pain in elbows, wrists, knees too.  I thought it might be just overextending myself as many of my peers were subject to…family life, going back to work once the kids were in school, school committees, school board committees and the list goes on.

“You have Chronic Fatigue Syndrome”, he says matter of fact like.  “You may have caught a virus at some point and never quite healed…here is literature you can read {he hands me over 4 sheets of paper stapled together} that explains this condition along with Fibromyalgia.  “What the hell is that?”I thought, “Is he trying to tell me in a nice way that it’s psychosomatic but they have a new name for such things now?”

“You might consider joining the FMS Association,”  he adds, “I can prescribe anti-inflammatory medication for you,” and he writes up a prescription.   My doctor knew how hard I worked, and volunteered for years as a breast-feeding consultant, my school and community involvement as well as returning to school.  He was treating my whole family, and I had been at this same clinic since 1974.    So why wouldn’t I believe this bomb he was handing over to me?

“Fibromyalgia is a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals.” 1

I read through the material when I got home.  I did not have access to the internet…come to think of it, who did at that time?  It was not until the 1990’s that most “ordinary” people did…that I knew of anyway.

I worked at a CLSC which is community access for medical and psycho-social and community services.  Quebec has many spread out across the province.  They are the pivotal hub accessing various services both in physical and mental health along with community services.

The doctors at my work often gave me medical journals they received in English. They knew I was a medical information junkie.  I learned more and more about FMS and CFS and it was not too encouraging.  Most doctors understood very little. Diagnosis was not a perfect science…it was almost like it was ‘hit or miss’.  No x-rays to prove anything, just the patient’s word for complaints of constant pain!

Later on a social worker and nurse at the CLSC,  started a support group for patients diagnosed with Fibromyalgia and most of those who attended had multi-disciplinary diagnoses.  Many had psychosocial concerns as well as chronic ailments.  Honestly, I did not want to be part of such a group…my lord!  The stigma associated with this was huge!!  I was also working and living in the same community, hence, there would be little anonymity or confidentiality.  Let’s face it, I lived in a very small town and did not see much relief or support in the near future!

I tried to explain to a few close friends and family but most had no clue what it was so it was difficult to be sympathetic.   My mom tried to understand but if there was no cure she just worried and I could tell it upset her more, so I tried not to talk too much about my aches and pains.

I am not too keen on hearing complaining either.  My mom did complain a lot most of her life…depression, chronic ailments as well, my grandmother too. Being raised by both women, I had had my fill of hearing them complain.  I know they suffered but I also remember hearing and seeing reactions of friends and family.  It was never very pretty.

I had a childhood friend who criticized me for complaining too much. I had not realized that I too had openly complained so much. Boy oh boy did that teach me a lesson, to put up and shut up more.

I started having migraines at 14 years old and this friend and I became friends when I was 13, so by the age of about 20, that’s when she told me I was annoying.   I guess I was to her.  Lucky for her she never had to endure the ailments of any of these invisible conditions.

Let’s face it.  If you have not experienced it, you don’t really know. So, I don’t fault anyone for not understanding…I don’t fault anyone for disbelieving but I do wish there were more compassion…just a little.

Some friends and work colleagues who later suffered with FMS suddenly understood me…sort of; but mostly there were  comments I could live without.

“But you don’t seem to suffer as much as I do. You work every day. You don’t take strong pain killers like I do. You must be a rare case with little symptoms.  Maybe the doctor made a mistake.”

Even my best friend does not quite understand since people she knew talk about their debilitating pain regularly; one of her friends has been accepted on disability.

 A friend in Toronto finally got accepted for disability but…To get on disability, you basically have to live on welfare for over a year and maybe it will accept your condition.

Some friends and colleagues have said to me:  “Well  you don’t really have a strong case of FMS.  You mustn’t have it that bad.”  That is like saying to someone who suffers with Schizophrenia, “Well if you aren’t talking to yourself out loud, wandering the streets,  you mustn’t have schizophrenia that bad.”

I was  getting so fed up of people telling me how I felt! I rarely admitted and even today, rarely do as well acknowledge my FMS…why should I?  Admitting you have CFS or FMS is like telling someone you have genital herpes or warts!  No one gives a shit…really! Not that I do have herpes or warts but I sure do empathize anyone that does (and a lot more do than the public cares to admit…but that’s another topic for another time… the stigma of STI’s).

My family in Toronto does support me, however.  My uncle is a speech therapist and worked many years in homecare…he gets it.  He explained to his wife and my cousin…so they have an idea that I do suffer, and they do have compassion.  They never judge me and often ask, “How are you managing your pain?”  There is feeling of comfort when someone gets it.

When I worked in Toronto at the same help centre for youths, I was hired the same day as another woman.  She was  about 15 years younger than me. She was a slim, frail woman.  She has rheumatoid arthritis.  I could only imagine how long it took for her to get ready for work. How I admired her. She could easily have gone on disability.  She explained once, that it took her several hours to get ready to come to work, yet she did and chose to.  I had worked in home care and knew how debilitating this disease could be.

When she learned I had FMS…she always would ask ME how I was…imagine that!!!   It seems that many people who suffer chronic pain seem to have compassion for others who do.

One year during our annual professional staff development training, she and I had agreed we would try to exercise more to keep our bodies more supple.  We agreed to coach (nag) each other from time to time.  I felt honoured to be coached by such an amazing woman. I so miss her today since I transferred to Montreal!

I don’t really talk much about this with my adult children…I don’t think they really believe or understand that it is a real condition.

Between 1987 and 1997 I decided not to publicly acknowledge I had FMS.  From time to time (at least one a month) I remember sitting in the living room and just breaking down crying.  The kids or their father would ask what was wrong, and I would always reply the same thing…nothing really, I just get at my wits’ end sometimes…so tired of carrying this pain. My neck, upper back and lower back were the worse…I would often lie on my tummy on the foot stool just to take pressure off my back and watch t.v. like that sometimes.  No one said anything…family just looked at me as if I were a bit weird but at least they didn’t mock me.  Everyone sort of pretended all was just normal and continued watching their show on the television.

FMS is too misunderstood…insurance companies refuse any compensation and at one time I took several months off and my doctor had to mark Situational Depression to make sure I received full benefits for the time off work.

I did have an amazing doctor that time in 1993.  She treated holistically…body, mind and soul.  She had prescribed a very low dose of antidepressants to help me resume sleep which in turn should ease my pain.  It did actually impact on a better (not the best but that’s just me) recuperative sleep.  Medical professionals were just learning what they know to be true now, that low doses of antidepressants enable patients to feel less pain.   I would go on and off these antidepressants for the next 15 years.

“According to the Mayo Clinic, “The painkilling mechanism of these drugs is still not fully understood. Antidepressants may increase neurotransmitters in the spinal cord that reduce pain signals. But they don’t work immediately. You may feel some relief from an antidepressant after a week or so, but maximum relief may take several weeks. Pain relief from antidepressants generally is moderate.” 2

Moving to Toronto in 1997, I saw various medical health professionals:  orthopedics, rheumatologists, physiotherapists, naturopaths, acupuncturists…who all specialised in chronic pain.  Upon visiting each one, I pretended not to know what I had…they all came to the same conclusion…FMS.

I finally saw a Shiatsu therapist who told my boyfriend, “You think you have pain!?  You do not know pain until you live in your girlfriend’s body…she carries too much pain.  It will take us many months to find minimal relief.” He was a gentle, kind man who had been practising Shiatsu for over 25 years!   I could have hugged this man…I never told him I was in that much pain…but he knew upon examination, after the scan Shiatsu therapists do over your body.  My current massage therapist does not doubt my condition either and does provide some relief.

Namaste

I found swimming in warm water, taking hot baths just immersing my whole body in hot water was soothing, Yoga (changing some positions to be more comfortable) was helpful, Mindfulness, relaxation, Tai chi, massage therapy, stretching exercises were several means of finding some relief.

I took anti-inflammatory meds off and on (that too is bad for kidneys and the tummy, ouch), took sleeping pills to stay asleep for at least 3 hours straight, off and on, but that too was limited in the time I could take since you build a tolerance to it.  I’ve tried the natural source of sleep aides like Valerian (yuck so stinky) and Melatonin but they no longer work…I get the most frightful nightmares with them now. I am currently not taking anything except over the counter medication from time to time now and seeing my massage therapist.  I have a referral to see an osteopath too…all these therapies are expensive and covering from insurance companies are minimal compared to all the treatment you really need.

In the past 4 years, I have since developed vertigo. The symptoms  are similar to Meniere disease but doctors say I could not possibly have that because I would not be able to ever get out of bed…so what do I know?

The first months I got these dizzy spells,  I would crawl on the floor to get my grandson ready for hockey…if  I stood up, I was afraid I would fall and living alone, you take extra precautions not to get into a bind like that.

I did start this condition following a sinus and chest cold and put the cause to some ear condition. If I sneeze or laugh, it will make the world spin. I used to be afraid to drive…my doctor still said it was nothing.  Finally, he said in an aloof way, that it was one of the symptoms of FMS and to just deal with it as were my migraines.   And so I do and I have.  The vertigo still comes and goes.  Tonight it was present.  I felt like I was hung over coming out of Starbuck`s getting  into to my car.    I am learning to just cope with it.

Reading through literature at the Arthritic Society has helped me somewhat because this huge recognized organization has listed FMS as a valid condition.  Reading literature with the FMS association gave me less comfort ONLY because society and the medical environment have not embraced this enough…publicly, I mean.

Don’t get me wrong now. FM does not define me in any way and I don’t want to be labelled as the woman with FM, just a bit of compassion if I may be having a bad day would be nice.

I am certainly no expert on any of these joint diseases, I simply wanted to share my story and how the “stigma” of this disease delayed my getting help and often isolates me as other sufferers, I have no doubt.

© Cheryl-Lynn Roberts, August 2, 2013

Resources:

1 http://www.mayoclinic.com/health/fibromyalgia/DS00079

2 http://www.mayoclinic.com/health/pain-medications/PN00044

http://www.arthritis.ca/page.aspx?pid=928http://www.fibromyalgiatips.net/

Meet Shaun who suffers with chronic pain http://ow.ly/nAWmM 

Shaun explains beautifully Fibromyalgia/chronic pain http://ow.ly/nAWhk