Helping Others Understand Your Pain

Absolutely brilliant post!  I'll be linking to this on a regualr basis from my perch over at MyRACentral - it's incredibly helpful.

This week, I was on the same path as you - I've just posted Better Living Through Chemistry (pardon the self-promotion) about the big drugs and why we take them.  Sure, I'm addicted - in much the same way someone with diabetes is addicted to insulin.  Big meds help me live my life.  Love the clothespin suggestion.

thank you for posting this so family members can read i have  a few family members that dont know how hard i suffer from day to day, they always tell me take a walk you will feel better or loose weight that will help you , im fusterated with them not understanding me so i will show them this posts thank you

Are there any medical groups that are reseaching fibromyalgia that would be interested in investigating the "familial/genetic" link regarding fibro?   My mother had it, I have it as well as both of my offspring and my two grandchildren. One of my two sisters is disabled with it, as is one of her two offspring and todate appears that one of two young offspring suffer with it also.   I learned this last week that another maternal cousin has been diagnosed with it.  I have about 10 cousins in all that we know of so far that have fibro...one also has lupus.  We would be a good case to investigate in regards to a genetic/familial connection

DM

I have suffered with fibro and DDD for years.  I also had a gastric bypas 2 years ago.  Since the bariatric sugery I have fought and fought for pain meds that could help.  After taking massive doses of oral Norco and still no relief, I sat back and took a second look.  I did some research and found that Norco/Vicodin/Percocet need gastric juices to break them down in the stomach in order for the body to absorb them.

It was then that I realized that due to bariatric surgery, I no longer have a normal supply of gastric juices that are needed.  I tried taking Norco with an acidic beverage but that did not help.  Finally I presented to my PCP the option of going to liquid hydrocodone medication.  I am now receiving much better relief on the liquid, have reduced dosage from 20mg hydrocodone to 7.5mg hydrocodone 4 x's a day.

If you have any gastric impairment, you may want to consider this method.

D. Marker

My son is 16 and has been in chronic pain for 6 years...The decision to medicate him is so tough...We had a healing for 95 glorious days....The pain came back intensely and suddenly.......I can't make it go away again and was feeling horrible.....You're letter made me realize that we just have to keep fighting and use medications until someone finds the cure......There is a cure because we had a healing of 95 days.....

Dear Karen,

Thank you so much for writing these letters.  I am one of those chronic pain sufferers that feels the isolation of family and friends, not understanding my situation or what they can do to help, is almost worse than the pain 24/7.

Your letters are timely for me.  I have spent about 3 weeks working on a letter to my adult children and other family.  Even though, I have analyzed and re-analyzed my wording, I had just decided not to send my letter for fear of further alienating them.  Your words are so similar but without the personal inflections which seems to always backfire.  I shared my letter with my dear friends on the Grind, asking for there advice about sending it.  They thought it was a good letter and that I should send it.  Take a look at it if you want.  It is in the March Daily Grind.  A couple of them asked to show it to their family members and it helped them, so I am glad that I shared it but I know my children would interpret it differently.

I have sent them your sharepost address, asking them to read the chronic pain letter and if they have more questions, that they could make a comment.  I hope they read it and I hope you don't mind that I said they could ask you questions.

I thank you so much for all that you do for us people in pain.

Deborah

Thank you so much for this open letter about fibromyalgia. I am in the middle of an exacurbation period. My pain is bad. To top it off an old back injury started acting up. My son had the audacity to tell me to my face that I was a hyperchondriac. My husband is no better he tells me get up and get out you will feel better. Nothing I say or do makes any difference to them. They simply don't care to find out about my condition. I printed your letter, I can only hope they will read it and believe it. I really doubt it though. My uncle passed away last week and I am envying him the peace he has. My husband asked my sister today if I died what would people remember about me. Before she could answer he said "that she lays in the bed all the time" To her credit she said she was remembering the funny things that happen to us when we go out together. April 7, 2009 I was married to this man that promised to love me and take care of me for 34 years. I have always taken care of him when he had or has one of his cluster headaches. You can't prove that either, yet I researched with one of the ER Dr's I worked with until he finally found the Diamond Headac he Clinic in Chicago. He helped us tremendously. Well my husband just walked by and asked what I was doing, when I told him, he got mad, said he knew about living with pain, he was living with it right now, and no he wasn't going to read it. I don't know if I can take this much longer. He is undermining me with my whole family. If it wasn't for my three precious grandchildren I believe I could just end it now.

Hi,

I just want to say this is so great,I have shared this with outhers to help them and to my family to explain me, my pain and Fibromyalgia.

Thank You Karen Lee Richards !!! Bless you !!

Valerie