HELPLINE | 888.788.NAIDW(6243) Sign up for email updates Tooltip youtube Google + Pinterest linkedin

Tuesday, 03 July 2012 01:18

WHAT YOU SHOULD KNOW ABOUT ME? Featured

Written by
Rate this item
(6 votes)

WHAT YOU SHOULD KNOW ABOUT ME? 1. My pain - My pain is not your pain. It is not caused by inflammation. Taking your arthritis medication will not help me. I can not work my pain out or shake it off. It is not even a pain that stays put. Today it is in my shoulder, but tomorrow it may be in my foot or gone. My pain is believed to be caused by improper signals sent to the brain, possibly due to sleep disorders. It is not well understood, but it is real.

2. My fatigue - I am not merely tired. I am often in a severe state of exhaustion. I may want to participate in physical activities, but I can't. Please do not take this personally. If you saw me shopping in the mall yesterday, but I can't help you with yard work today, it isn't because I don't want to. I am, most likely, paying the price for stressing my muscles beyond their capability. 3. My forgetfulness - Those of us who suffer from it call it fibrofog. I may not remember your name, but I do remember you. I may not remember what I promised to do for you, even though you told me just seconds ago. My problem has nothing to do with my age but may be related to sleep deprivation. I do not have a selective memory. On some days, I just don't have any short-term memory at all. 4. My clumsiness - If I step on your toes or run into you five times in a crowd, I am not purposely targeting you. I do not have the muscle control for that. If you are behind me on the stairs, please be patient. These days, I take life and stairwells one step at a time. 5. My sensitivities - I just can't stand it! "It" could be any number of things: bright sunlight, loud or high-pitched noises, odors. FMS has been called the "aggravating everything disorder." So don't make me open the drapes or listen to your child scream. I really can't stand it. 6. My intolerance - I can't stand heat, either. Or humidity. If I am a man, I sweat...profusely. If I am a lady, I perspire. Both are equally embarrassing, so please don't feel compelled to point this shortcoming out to me. I know. And don't be surprised if I shake uncontrollably when it's cold. I don't tolerate cold, either. My internal thermostat is broken, and nobody knows how to fix it. 7. My depression - Yes, there are days when I would rather stay in bed or in the house or die. I have lost count of how many of Dr. Kevorkian's patients suffered from FMS as well as other related illnesses. Severe, unrelenting pain can cause depression. Your sincere concern and understanding can pull me back from the brink. Your snide remarks can tip me over the edge. 8. My stress - My body does not handle stress well. If I have to give up my job, work part time, or handle my responsibilities from home, I'm not lazy. Everyday stresses make my symptoms worse and can incapacitate me completely. 9. My weight - I may be fat or I may be skinny. Either way, it is not by choice. My body is not your body. My appestat is broken, and nobody can tell me how to fix it. 10. My need for therapy - If I get a massage every week, don't envy me. My massage is not your massage. Consider how a massage would feel if that charley horse you had in your leg last week was all over your body. Massaging it out was very painful, but it had to be done. My body is knot-filled. If I can stand the pain, regular massage can help, at least temporarily. 11. My good days - If you see me smiling and functioning normally, don't assume I am well. I suffer from a chronic pain and fatigue illness with no cure. I can have my good days or weeks or even months. In fact, the good days are what keep me going. 12. My uniqueness - Even those who suffer from FMS are not alike. That means I may not have all of the problems mentioned above. I do have pain above and below the waist and on both sides of my body which has lasted for a very long time. I may have migraines or hip pain or shoulder pain or knee pain, but I do not have exactly the same pain as anyone else. I hope that this helps you understand me, but if you still doubt my pain, your local bookstore, library and the internet have many good books and articles on fibromyalgia. I intend to spread the word about chronic pain... it is not that those of us who suffer from it are weak... on the contrary, most of us are incredibly strong, intelligent people who suffer from a debilitating auto immune 'syndrome' of which there is no cure. Join the discussion in NAIDW's chronic pain support group - https://www.naidw.org/groups/viewgroup/25-chronic-pain-support-group

Read 52342 times Last modified on Wednesday, 17 June 2015 05:15

Latest from Site Admin

3 comments

  • Comment Link REllis Jones Thursday, 14 August 2014 05:03 posted by REllis Jones

    I am a former corrections officer. I was hurt on the job. I was handcuffing an inmate and he tried to lunge for the male officer and I held on to the handcuffs so he could not use them as a weapon and we ended up going down together. He banged his head and I banged my knee on his steel bed. I wrote my report and walked and did my job for two months until I could not take the pain anymore. I thought I bruised it but after an MRI, I found out I tore my meniscus. Well, workers comp sent me to see their doctor and he did the surgery and after surgery sent me to rehab. Well, in rehab, I ended up re-tearing it and found out through another orthopedic specialist that the doctor that did the surgery did not repair it all the way, maybe 30% and that is why it re-tore. Well I have messed up my right knee compensating for the left one that the dr messed up and workers comp would not take care of the right knee. They were told that is why my right knee is messed up and found out I had three meniscus tears in that knee also. They hurried up and closed my case so I could not get anything for the right knee. When I hit my knee, it made the OA rear its ugly head so now I am in constant pain. Cannot walk far, stoop, sit long, bend my knees, etc. Now I am on disability and they don't pay me much and now I am living like a pauper. I could not find anyone to take my case against this dr so now its five years late and still in pain. I have had a total knee replacement but I am still in pain. My knee still gives away and it pops every time I walk, it catches and I have to straighten it out with my hands. It swells and throbs 24/7. I will be glad when I can just walk to the mail box and back without pain. But, not happening.

  • Comment Link michael whiteley Thursday, 07 August 2014 06:10 posted by michael whiteley

    articicle described my pain from a mining accident,10-08-08,nonstop headache,neck,back,crazy electric type signals that are sharp and fiery,much more,insurance co,hasnt accepted iinjuries,rated 10percent disabled.taking my final appeal for help to district court for judicial review.was diagnosed traumatic brain injury,severe concussion,post concussive syndrom.traumatic brain injury has not been an injured body part because it wasnt on the er report.i could tell about the coverup of my accident,laws broken,ethics violations,oaths disreguarded.smashedminer

  • Comment Link dorothy Marshall Sunday, 23 February 2014 03:18 posted by dorothy Marshall

    i feel like i wrote most of these comments lol I think God sent me to this page because no one seems to understand the pain today and the happy tomorrow, the staying in bed for days the staying awoke for days. I am in NY and I was given a transportation that takes your door to door where ever you wnted to go. Now that have eliminated me from the service called Access A Ride. The recommendations comes thru the american disabilites I cant fight like i used to because of diabilities. Can anyone help me to find out what on earth are they looking for. I am sorry that I dont have the look of being disabled whatever that might be. I use a cane to walk and still fall down, sometimes I have to laugh at myself, so that I dont kill myself. I need help ASAP

Leave a comment

Make sure you enter the (*) required information where indicated.\nBasic HTML code is allowed.

How Can We Help You?

Advertisement

Sponsored Links:
 
Emotional Wellness
Comprehensive Behavioral Health Specialists.
 
Pain Management
Pain management. See how we can HELP!
 
Prescription Assistance
FREE discount prescription drug card.
 

Advertisement

drug_card

     Do you want to advertise with us?

                              Ads by NAIDW!

Newsletter Sign-Up

Forum Activity

More Topics »

Advertisement

Sponsored Links:
 
Emotional Wellness
Comprehensive Behavioral Health Specialists.
 
Pain Management
Pain management. See how we can HELP!
 
Prescription Assistance
FREE discount prescription drug card.
 

Advertisement

abilitiesexpofeatured     Do you want to advertise with us?

                            Ads by NAIDW!

Find Us On

  •  Tooltip youtube Tooltip linkedin Blog RSS Feeds Sign up for email updates

Contact | How Can We HELP?

NAIDW: 43912 N. 50th Ln Phoenix, AZ 85087

Telephone: 888.788.NAIDW(6243)

Fax: 623.455.8678

Email: info@naidw.org

Contact Form: Can We HELP?

Cron Job Starts