my name is wezzie I am a 35 year old female who has suffered with chronic pain for more then 20 years. i sleep one to two hours a night . some times not at all. its now 2:03 am Tuesday may 20th. on a scale of one to ten my pain right now is a 10. i have constant pain all day on average a 7 . something simple as going to purchase food only taken an hour causes me pain of 10 lasting sometimes 5 to 9 hours before going back too 7. i have taken two 500mg nabumetone tab and three 500 mg generic pm pain tab within the last hour. my pain is still a ten. to day i had to leave my home to go to the doctor . i went in a medicaid cab. this was 10:15 am at 11:30 pm i had to go back out to the social security office i caught the free trolley which picks me up 1/8 to 1/9 a mile from my front door. and takes me the same distance to were i need to go . when i returned home my pain was a 9. my knees, ankles , my back , my elbows, actually every inch of my body hurt. i did not want to go back out.( and i don't go outside everyday only when necessary )at 7:30 one of my children came home he twisted his ankle playing basket ball . so i had to go back out I'm a single parent. our hospital visit was short and i was back home by 10 pm. too me my pain is now a 12 on a scale of 1 to 10. i have EHLERS DANLOS SYMDROME , FYBORMIALGIA, AND TESTED POSITIVE FOR ANA. IM ALSO BIPOLAR AND HAVE PTSD( DEPRESSION) AND MY PAIN DOSENT HELP. I DONT KNOW WHAT TO DO IM ONLY 35 AND NOTHING HELPS. SPMETIMES I TAKE AS MAY AS 10 PAIN PILLS AND ONCE AND STILL MY PAIN ONLY DROPES TO A 4.AND ONLY FOR A SHORT TIME. UNTILL 2006 NO DOCTOR COULD TELL ME WHY I SUFFRED WITH PAIN AND BECAUSE OF MY AGE IT WA ALWYS BLOWN OFF. ONLY AFTER I TRIED TO TAKE MY LIFE 4 TIME DID MY DOCTOR TAKE ME SERIOUSE AND BEGAIN TESTING ME FOR A CAUSE. IN 2006 I WAS DIANOSED WITH FYBORMYALGIA SNYDROME WITH MULTIPLE DIFFUSE ARTRALGIAS, TROCHANTERIC BURSITIS, ASERINE BURTITIS . ON 4/12/2007 RADIOLIOGY SHOWED . BILATERAL HANDS AND WRIST - INDICATION ARTHRITIS. LEFT KNEE ORTEOARTRITIS, HYPERMOBILITY SNYDROME. RIGHT KNEE HYPERMOBILITY SYNDROME , THERE IS SMALL JOINT EFFUSION. LEFT FOOT HYPERMOBILITY SYNDROME. RIGHT FOOT OSTEOARTRITIS, HYPERMOBILITY. IN THE PAST I WAS TOLD I HAD KYPHOSIS, LORDOSIS, AND SCOLIOSIS. I HAD THREE ANGINA ATTACKS AT AGE 19 AFTER BIRTH OF 2ND CHILD. AND HAD TO HAVE A BLOOD TRANSFUSION AT AGE 20 AFTER BIRTH OF 4TH CHILD. HAD TWO KIDS WHEN 20 NO TWINS. I WAS HOSPITALIZED ONCE FOR CHRONIC PAIN AND DECREASED PLATELETS IN 1991 AND IN 1993 FOR PRE ECLAMPSIA AND HEMORRHAGING. (ONLY SURGEY AT THIS TIME C-SECTION. 8/20/2007 AFTER ALL MY MEDICAL RECORDS AND BEING SEN BY A GENETICS I WAS TOLD I HAD EHLERS DANLOS SYNDROME. AND THAT IT CAUSED ALL MY PAST MEDICAL PROBLEMS. AND THE IT WAS MY GENETIC MAKE UP AND THERE WAS NO CURE MY JOINT WOULD CONTINUE TO BE DAMAGED AND IF I DIDNT CONTUIE TO BE MOBLE I MIGHT NOT BE ALBLE TO BE MOBILE INE DAY. SO I WAS TOLD I HAD TO DO PHYICIAL THERPY FOR THE REST OF MY LIFE. BETWEEN 1991 AND 2006 SO MANY PROBLEMS AND SO MUCH PAIN WAS ONLY GIVING PAIN MEDS. AND TOLD I HURT BECAUSE I DONT SLEEP. NO I DONT SLEEP BECAUSE I HURT. AND WHEN I DO SLEEP I HURT MORE WAKE UP STILL. ITS NOW 3:02 AM MY PAIN IS A 8 MABEY TWO MORE PAIN PILLS IN 3O MINS AND MYBE I CAN SLEEP TILL 6 AM BEFORE HAVING TO TAKE MORE. I HAVE BEEN FIGHTING FOE MY DISABILITY SINCE 1998. I HAVE HAD MORE THEN 102 JOBS NONE MORE THE 45 DAY AND AS LEAST AS 1 DAY BUT ON A AVERAGE TWO T O3 WEKS BUT NOT CONSISTANT. I HAVE NOT BEEN TO WORK SINCE 2006 . IF NOT FOR MY KIDS ID RATHER BE DIED. WHEN I TELL PEOPLE MY TOES KNUCKLES AND EVERY INCH ACHES THERE AMAZED .I DONT KNOW WHY I OPED MY MOUTH I FEEL MY PAIN INCRESSING AGIAN MAINLY BACK, ELBOWES, KNEES,AND HANDS WHICH CAUSES ME TO TYPE WITH TWO FINGERS VERY SLOWLY. SINCE EHLERS DANLOS IS GENETIC I HAD TO HAVE MY KIS TESTED . OUT OF FOUR TWO HAVE IT. MY ELDEST TWO THERE HAS TO BE SOMTHING I CAN DO TO STOP THIS SUFFERING.I CRY 65% OF THE TIME. 3:28 AM I JUST LOOKED OUTSIDE ITS STARTING TO RAIN. OH NO DID I TELL MOISTURE INCREASES MY PAIN THERE WILL BE NO SLEEP TONIGHT.IN THE LAST 10 DAYS I STAYED UP ALL NIGHT I THINK 4 NIGHT NOT BACK TO BACK THO THANK GOD. RAIN COLD DOES THIS HAPPEN TO ANY ONE ELSE
i dont know how much more i can take
Hi Wheezie,
I am 46 years old. I too have Fibromyalgia, and Bipolar syndrome, PTSD as well as sacroilitis, herniated disc, spondoloarthrapathy, chronic severe heaeches and the hyperextension in the joints that you mentioned. I have not been tested to see if I have anything heriditary, my mother was in chronic debilitating pain her entire life, so I would not be surprised. I too suffer from severe insomnia due to pain...and am told the same thing...lack of sleep makes the pain worse..a vicious cycle. I cry all the time too. I can relate to your comment about your toes hurting...no one seems to understand how painful I am...from head to toe. In fact some of my worst pain is in my feet. I too rarely leave the house. My son is 25 years old and lives out of state, so I am not caring for children as you are....I don't know how you are doing it. I see a pain management doctor, but pretty much have to beg and grovel for 8 percocet a day. Not nearly enough of course, which is why I never have enough relief rom pain to go out and shop or do anything...I don't even eat some days if it is too painful to stand long enough to prepare anything. 10 minutes is my standing/walking limit before nerve pain in back, thighs and legs is too severe to bear. I have seen so many doctors and they have all been completely insensitive to my pain or the fact that I have no quality of life. I too feel at the end of my rope and wonder why I continue to fight and struggle with this. The same doctors who diagnosed me fibromyalgia, don't even take it into consideration when measuring the pain I'm in. No one has found an adequate explanation for the nerve pain in lower back, left leg and feet...now I have much numbness in left thigh all the time. I don't know what to say except that I understand...especially the bipolar part making it all worse. God Bless and Take care.
hi thank you for your comment i just want to respond to you yes i have had a pain management doc in 2006 after yelling at a doctor to do his job and actually test me for something pain related and stop giving me pills. i don't want to cover it up i want to fix it well at least know what is causing it. my pain management doctor did more for me then any other doctor but she specialized in pain. she set the ball rolling for me. but when i met her i told her i don't like pills too many side affects plus after a while the don't work. help me limit the pain so i don't need it i have hurt so long i pain tolerance is high and i limit my activities i take my blood pressure pills somtimes my bipolar pill if i can find one that don't give me side affect . i was just started on something new this month and i only take somthing for swelling , fluid , and aleve advil stuff like that . i m sick of pillsim 36 how much lonnger do i have to do this
Hi Weezie,
I know exactly what you mean..I hate taking the pills too. I want to know what is wrong and get at fixing the problem , not just treating the pain. On the other hand, without the pain medication I would have no quality of life at all...I would not even be able to write this e-mail. I could not stand or walk or function in any way..so I have to take them. My tolerence is high too...and that is a problem in itself. The worse that gets, the less pain relief I get. I also have terrible problems with side effects from the bi-polar meds. I have been through ALL of them. I have finally ended up on Topamax, Welbutrin and Clonapin. So far, this conbination has had the fewest, mildest side effects and I have been able to tolerate them all pretty well. I'm sure that some of the other drugs that I was on were probably more effective...but the side effects were not worth it. These are working okay..I'm not the best I could be..but I'm not at my worst either...and I think with all the pain I'm in it's impossible to tell how well my mood stabilizers are working...between constant pain and terrible insomnia...who knows what is causing any changes in mood. I don't know how long you will have to keep taking mecication..some people who are bipolar have mild enough cases that they don't need to take meds all the time..they just take them if the start to feel symptomatic...or there are some who use herbal treatments like magnesium and St. Johns wart and they do okay too. But I think for most people with bipolar disorder..some medication will always be necessary. As for your pain..I don't know the answer to that...I wish I could tell you. I am going to see an accupuncturist. I have decided to go in a different direction since I can't seem to get any answers the traditional way...maybe I can at least get some pain relief in a different way. I will continue to pray for you...you said that your pain management doc was good to you..perhaps she can help with your disability claim if you're still having trouble with. God Bless and take Care,
I know what a difficult time you are going through. I suffer from severe lower back pain I have had three surgeries and each surgery just leaves me in worse pain. I take alot of pain medicine without the pain medicine I would not be able to function. I hardly ever go out as I will come back in severe pain and have to deal with it until the next day when it starts all over again. My sleeping medicine is the only thing that keeps me from feeling pain as it puts me to sleep for four hours and then the cycle starts all over again. I hope you were able to get your soc. sec. I know how hard that is to get. I don't know what to say to make you feel better maybe knowing that others suffer too and its hard to read your post and know how you are feeling.
Hi Wezzie, I can't say I know exactly how you feel but I can definitely sympathise. I have HMS/EDS and wondered if you had looked at http://www.hypermobility.org/ It has loads of useful information and forums filled with people going through the same sorts of things. They also have information on how to see professionals in the right field to really help you manage your condition. Unfortunetly I know what it is like trying to deal with constant pain and all I can say is that I hope you manage to get some help.
Take care and try to keep your chin up :)
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Hi Weezie
I am so sorry to hear about how much pain you are in. I can type much longer tonight I am too sick but I wanted to tell you please dont give up, do you go to a Pain Clinic? If not you should try and find one. You have a complicated history and they would be the ones to be able to help you the most I think. I will keep you in my prayers and hopefully we will talk again,
God Bless and Good Luck with everything.
Jody
Hello Weezie! I can only imagine what you are going through. I have fibromyalgia and suffer from extreme insomnia. You really need to be getting your sleep. Ask your doctor about something for your sleep. I would be careful about going to Pain Management. If you make them mad they will cut you off and leave you cold turkey!
I am praying for you.
jaz
hi im glad to meet you not much has change for the better in my life i went to court june 6th for my disability i was denied agian altho 5 doc ar pushing for it. i have been homless living with othther people since july .this makes me proud to be an american yeah for a while i thought no one would care . i want to say thank you. i was glad when i logged in to day i had four comment. from people like me who unnder stand my fight.