So, please, the next time your loved one says they are feeling alot of pain, believe them. I might also add all the symptoms we experience which tend to make you think we are hypochondriacs. These symptoms have been designed by a disease called fibromyalgia in order to make us look like liars. However, this is the list as I know it: All over pain as some kind of the worst flu; deep muscle aches; burning pain in some areas which is better known as nerve pain or neuropathic pain; stiffness; balance problems; coordination problems; altered thought processing; altered memory; fibro fog which is a feeling of being in some kind of brain fog where the brain just seems to not be wanting to work; dizziness; lightheadedness; bowel and bladder problems; sensitivity to light and sound and touch.
Another issue is chronic exhaustion. This kind of exhaustion is beyond the word "tired". It is not "tired". I remember my younger years when I was "tired". This is not tired. It is pure bone deep exhaustion all the time no matter how much or how little I sleep. And this all started way before I took any narcotic pain relievers. We have evidence of altered sleep patterns found in sleep studies. We have lack of or interrupted stage IV sleep which is the deepest sleep allowing the muscles to repair and relax. So waking up from a night of sleep does not refresh us. We are plagued by this disease even in our hours of sleep. Some people have chronic insomnia with this disease. Others, such as myself, sleep but it is not refreshing sleep.
Please believe your loved one. This is the whole purpose of my writing today.
Debra Van Ness RN
a.k.a. learnFMnow
...he says nothing in response.
Dear Debra,
.
Thank you for the awesome post. I have had Rheumatoid Arthritis for 34 years and that disease is pretty much under control, but my fibro friend (enemy) seems to never ever be under control!! I absolutely hate this constant pain. One day at a time I guess. I too have pills, they are my friend! I am so judged by my family because they think "you didn't need narcotics with your RA, why do you need them now"? I am blown away at how they can play doctor with me, totally disregarding all the pain I have everyday. I have a double whammy, having RA and fibro, it sooo sucks!! Are you able to work? I can't imagine how you worked before your diagnosis, I feel for you. I have had many nurses in my day and you know which ones are good and which ones aren't when it comes to pain relief!! I imagine you have got to be one of the best in town. I once heard that if you have RA your likelyhood of getting fibro is as high as 80%. Is that true? You didn't mention if you had children or not, mine all came after my RA diagnosis (i actually had juvenil arthritis) so all they know is a mom who struggles with health issues. I never got to do many physical activities with them, but they all turned out ok. They are pretty understanding, except for the eldest daughter, she hates the fact that I am on pain medication and actually wouldn't talk to me after a particular difficult hospitalization. I went through a detox program so I could try Suboxen (spelling?), unfortunately it did not work, I was completly devastated. I am so glad you shared your experiences and hope to hear more from you. You must have a wealth of information and many stories to tell. Well God Bless and again thank you!!
I am a big advocate for fibro belief, removal of stigma, and advocate for pain control. It it means narcotics, then so be it. What people don't understand is that if they took the meds we did, yes, they would be looped. But because we take them for the real symptoms and real pain, they don't loop us or drug us like it would them. My anger comes not only from FM miseries, but more from the fact we must face such stigma and judgement. People are attacking our very dignity and integrity for all the mean things they can say and think of us.
We hurt. I promise if they had one day of this kind of pain, they would look for narcotics too. They have no idea what kind of pain we suffer everyday. They say it won't kill us, but to me we live a life of someone with cancer, yet ours is not cut short. We live with it in the normal span of life.
hugs to you,
Debra
learnFMnow
Also let me comment on how cruel it was to detox you. It was cruelty. Yes, of course we will have withdrawals from stopping our meds. But people do not understand that this does NOT mean addiction. Addiction is when you crave the drugs for a high and take more and more so that you can get that way. The meds are taken beyond pain relief. That is addiction. People even have withdrawal symptoms from antidepressants and they are not even a controlled substance. People don't get high on antidepressants.
hugs again,
Debra