Living with pain - my story.

by Michelle Desjardins
(Saint-Andre, NB Canada )

My name is Michelle, I am a 51 year old french Canadian woman living with fibromyalgia. I looked up the definition of this in the dictionary. It states:

Pain - noun
- physical suffering or distress due to injury, illness, etc.
- a distressing in a particular part of the body.
- mental or emotional suffering or torment.
Synonyms - torture, misery, torment, pain, ache, agony, anguish, are terms for sensation causing suffering or torment.
- pain suggest a sudden sharp twinge.
- ache applies to a continuous pain, wether acute or dull.
- agony implies a continuous, excruciating, scarcely endurable pain.
- anguish suggests not only extreme and long continued pain, but also a feeling of despair.
Pain, ache, agony, anguish are terms for sensation causing suffering and torment.
Pain and ache usually refer to physical sensations (except headhache).
Agony and anguish may be physical or mental.

There are no test we can get for fibromyalgia. How long does one have to live with this illness before he or she can get treatment. I was diagnosed with this illness 2 years ago. Before I was diagnosed, I was hospitalized for mental breakdown and put on anti-depressants. The doctors did not know what was wrong with me. So, they feed me pills. I have been on Lyrica for the past year. The doctor started me on 150 mg once a day and then upped to 300 mg a day. The side effects were so bad that he then put me on 150 mg again, once a day. The doctor sent me to a Neurologist who suggested I smoke pot due to the fact I am not responding to the medication and have too many bad side effects. Back at my family doctor he refused to even offer me this. He said no way he would go for this alternative.

This is my story I'm sad to say. My lifestyle has changed completely. This is also hard on my family and this makes me sad.

We need to find a way to get more resources for this everyday continuous illness. Thanks to this web site we can now start talking about it and make our stories known.

I am proud to be one of the first to write about my story. I would like to have this site grow stronger and maybe one day find a cure.

You are not alone my friends,
Thanks,
Michelle

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Living with pain.
by: Michelle

Hi,

I've read your comments on FM and it seems that we all have the same problems with this illness, with our doctors, society and family.

I've finally accepted this illness because I realized I had no choice.

I've spent a big part of summer in bed with chronic pain and fatigue. Gone are the days of enjoying summer and all of the fun activities. I feel lucky because my children and husband made me realise that accepting this illness plays a big part on the way I see and live this illness. I also feel lucky because all of my children are gone from our house.

By reading some of your comments there are lots of you commenting on how it depresses you even more because you are not always able to take good care of them or simply enjoying life with them. This makes me sad a lot for you. I wish I could help you all.

I've also read on a comment that only making supper can leave you like you've got nothing left to give. I had the same problem. One thing that save me was accepting the disease and throwing my hands up and saying to myself "I can't change this life so I might as well accept it. At least it's not cancer, I can walk not always good but that's ok".

Accepting this illness is the key to the way you see yourself and other's see you. Accept, that there is no cure for now and accept the fact that your body is telling each and every day that it is not capable of doing what it used to. Enjoy the once in a while good days. And accept the bad days.

We cannot change this illness. That's the way it is.

I welcome any comments you have and I wish you a very nice Christmas.

I'm sorry if I made spelling mistakes, I'm french Canadian. --- lol

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Michele's treatment
by: Philippe

Hi Michele

I made a few enquiries with doctors who help with the site. I'll try to summarize their comments:
- Why are you taking 2 antidepressants?
- Alprazol is a benzodiazepine. As such it has an anti-serotonin effect which goes counter to the antidepressants that increase your serotonin levels. The only benzodiazepine that does not have an anti-serotonin effect is clonazepam.
- Are you taking any supplements? Magnesium chloride, Vitamin B6, Vitamin D3 would be a good idea (magnesium is lacking in fibromyalgia and in most of developed world population, vitamin B6 has pro-serotonin effect, vitamin D3 is also lacking in most people and has good effect on blood pressure and pain)
Lots of hugs.

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My side effects on Lyrica 150 mg - twice a day
by: Michele

The dosage of 300 mg a day of Lyrica gave me the following side effects :
- weakness (always feeling fatigued )
- nervousness ( I am on Alprazol 1 mg 4 times a day)
- feeling abnormal (not being myself)
- muscles spasms (part of the illness)
- vision changes
- muscle pain ( also part of the illness)
- unexplained swelling (hands, knees and feet)
- suicidal thoughts (I've had too many - my pain is so bad that the mental illness is part of this illness also).
- dry and itchy eyes
- menstrual problems (big and many blood cloths and heavy bleeding).
I am on the following medication:
- Ramipril 10 mg once a day (high blood pressure).
- Warfarin 4 mg - for 3 phlebitis I had in my left groin (I had broken my leg 2 years before).
Quetiapine 25 mg - 1 or 2 in the morning and 3 at bedtime. This is an anti depressant.
- Amitriptyline 20 mg - once a day. This is also an anti depressant.
Lyrica 150 mg a day from 300 mg. Due to the bad side effects it had on me.
- And lots of Tylenol extra-strength.
So, you see my friends the illness is at a point that it not only affects my body but my mental state also. I have found that taking the anti depressant at bedtime makes me feel less weak and nervous at daytime. I hope this little bit of information can help you also (if you are on anti depressants), but please consult your doctor before you start this.
I leave you with lots of hugs. And still, I repeat from my earlier comment: "You are not alone"., so lets talk about it.......
Thanks,
Michelle

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Your resilience is an example to all of us!
by: Philippe

Thank you Michelle for your courage.
I like your investigation on the definitions of pain and suffering. I am always amazed at the semantic discussions and this unending separation between physical and psychological aspects of pain. Each one of us is an entity and separating physical from psychological lead to mistakes and false judgmental approaches. Your story shows it very well.

What were your side effects on Lyrica? Did you get improvement and for how long?

Thank you for your kind words and your support
Philippe

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