I also have chronic pain because of endometriosis. Sometimes there are "triggers" from stress or other factors that can trigger pain... but it is hard to tell what they are. I guess in some way or another you kinda have to be your own doctor, and figure whats causing you pain?
I have a lot of food triggers, so I tend to avoid red meat, etc.
try talking to a doctor? or find a alternative doc, its nice to have a variety of perspectives because you might learn something new!
I hope your feel better, and this helps, if anything your not alone with facing daily pain.
hugs x

Thank you lucille for your understanding. Sometimes I feel like I am living with this secret in a sea of "normal" people. I don't tell many people what is really going on with me, why I cancel plans, why I don't do anything on the weekends, why I cry so much, why I need so much sleep. I want to live, be happy and most of all just be able to count on feeling good enough to plan a life. I believe things can get better, I think the healing for me has to come from within...I have given up on doctors really helping much.

Did you see the You Tube video of the singer Halsey on The Doctors talking about her endometriosis? You should check it out...she is so brave and frank about her story. It will make you feel less alone in your struggle. xo take care.

These are nerve pain episodes. The bee sting/burn pains.

I get them in my leg all the time. It feels just like a bee sting. Its a neurotransmitter in your brain sending a signal to a specific point in the nerve in your leg bring a burst of pain, because somewhere for some reason, there's been an injury to your nerve that's causing misfires. Unforturnately once they start, they don't usually go away. I've been dealing with Pain and Pain Management since I was 17, that would be 32 years now. I've had 30 surgeries in the last 19 years and I don't even know how many procedures, lost count years ago.

I'm Kat by the way, hi. I get bee stings, brain zaps, burn pains...all phantom, all nerve misfires and all Nerve Pain. Why? Well I have a Seizure Disorder, I have Cluster Migraines that can last for weeks at a time, I have BiPolar Disorder, so that's 3 major Neurological/Mental Illness issues. I broke my mid/lower back 7 years ago sledding, the only removable organ left in my body is a lung and a kidney that only works 20%, everything else is gone due to disease or illness, umm I've had cancer twice so lots of chemo and chemo for Immunology issues. Basically my body is a piece of crap, so there's not a Dr. on the planet that can tell me why I have Peripheral Neuropathy and I see the best, at Duke or UNC-CH. But I don't expect them to, like I said my body is a piece of crap, I don't expect answers to unanswerable questions.

Now I have a better question, do you have Seizures regularly? Because you seem nonchalant about that, and I couldn't find your original post, but I thought you had Fibro and Seizures aren't the norm for most Fibro patients.

But those of us that have seizures in the night, yeah we wake up feeling like someone beat the hell out of us. I have Grand Mal Seizures so usually the nightstand is wreck and if I forget to move to the middle of the bed before I conk out, odds are I wake up on the floor.

I hope your feeling better, and not so beat up and tired. I use lidocaine patches and Voltaren gel if the nerve pain gets to the point where its just driving me batty. Alot of the time other pain is worse and I can ignore it, its just one of those things I've gotten used to over the years. Narcotics don't work on nerve pain, and the Nerve Pain meds that are out there, I have a reaction to, so they aren't an option, but the Lido pads and Voltaren Gel calm it a bit, so its tolerable. Have you tried Lyrica or Neurontin for the Nerve Pain?

Take care, I hope it gets better for you,
Kat

Wow Kat, thank you for sharing so much personal information. I am on my way to work but will write a full response later. Yes, you are right I do have fybro (whatever that is) and seizure disorder but I also have severe scoliosis, stenosis, bulging disks, pinched nerves in my lower spine and had a bad case of Lyme disease in my twenties.
I am so sorry you have had such a rough time of it, you literally do have a "piece of crap" body. How you keep going is a testament to your will and determination. More later...thanks, Kari

LOL...No I'm just stubborn as hell..and hate to lose!

Oh come on, it takes more than being stubborn to survive all that. It takes a strong will for sure. I can not believe with all the pain issues you have had that you got cancer on top of it. I am not sure which was the chicken and which was the egg. Either way, you have been through hell and lived to tell the tail. That takes guts.

As for me I do not have regular seizures and haven't had one when I am awake for over a decade but once in a while I wake up with that "feeling" and I think I may have had a mild seizure in my sleep. You know, the headache, sore jaw, foggy head, exhaustion...I can't say for sure. I have never had a grande mal like you, just partials. I have been lucky. If I take really good care of myself they are not an issue, but of course I do not do that as much as I should. I am a single mom of a teenage son on the spectrum and I have an ailing mom, I am busy :)

My back can be really bad at times, sometimes I am incontinent when it is at it's worse and I think most of the pain and nerve shit I deal with stems from my scoliosis. I also know that I never felt "well" after I had Lymes, throw in a few seizures, oh and I have cluster migraines too- anyway, it is kind of the perfect storm with me. When everything acts up at once and the pain is over a 7-8 consistently I kind of lose my mind temporarily. Have you noticed that a lot of the people with chronic pain have multiple issues that contribute? I was just reading that many meds cause neuropathy! I was so pissed like we all need that added to the mix. My one leg has been numb for months, toes have been numb since I was a teen but it never hurt until recently.

So that is my story...what is it like to be bi-polar? I hear that the highs can be great but not worth the lows. Are you on meds for it? I sometimes feel like I am really certifiable but when my pain is under control and I am not wetting my pants I feel pretty good :) Thanks again for sharing and being frank. I appreciate it. Kari

Kids and moms will keep you busy, that is for sure. I was married for 25 years, I've been happily divorced for 7, and I have 2 sons, a 19 yr old in University and a 28 yr old Fireman/Army Natl. Guardsman who lives way too close to me. lol

I think that Chronic Pain and Multiple Diagnosis is one of those Chicken before the Eggs situations, for some the Chronic Pain issues bring on more issues, for others their Multiple Issues bring on Chronic Pain issues. I rarely meet people who have 1 single thing that cause Chronic Pain and besides that they are Perfectly Healthy. I'm not a big believer in Mental Health issues causing Medical Health issues and vice versa.

I was given a crapass body and blessed with an expansive mind and I've used and enjoyed it well over the years. I graduated HS at 15 and spent 12 years in University getting 2 sub-Degrees in Computer Science and Accounting and my Ph.D in Clinical Psychology. I retired from the Mental Health field due to the Medical Health issues demanding such and continued working in my backup field of Accounting part-time. As long as I can work part time, keep my brain happy, garden and keep up with my Volunteer work. I work with Teens who self-harm, newly diagnosed BiPolars and a Suicide Hotline, I tend to be content. The gardening keeps me active, other than that my physical activity is limited to what I can do in swimming pool, my joints are shot and my arthritis is too advanced for regular exercise.

My seizures are pretty well controlled right now, I started having a new weird kind about 6 months ago where'd I'd have episodes of a 5-6 hr time period in the night of "waking" and "blacking out" kind of all over the house, lack of memory from one room to the next and just weird aura's. The addition of a 3 anti-seizure med and tweaks to the current 2 solved that issue and I generally have 1 seizure a month outside of high peak allergy season and if I keep my stress levels low.

BiPolar Disorder is in some ways interesting and in some ways really tragic. I didn't get the fun one, I have the Severely Suicidally Depressed type. 5 suicide attempts, 5 Inpatient Psych stays, 3 cycles of ECT after last one and I haven't had a suicide incident since, that was in 2010. I generally have 1 really strong Manic Ep. a year and a couple of small Hypomanic Eps. A Manic phase for me is 5-7 days with no sleep, I don't eat, my brain becomes a Hamster Wheel that does not stop, it just spins at a hundred miles an hour...I would be painting my kids bedroom at 3:00a.m...standing on their bed...while they were in it, sleeping, not the best parenting in the world. I was DX'd BiPolar 6 weeks after my first son was born, so he got the most instability of the two, by the time my 2nd son came around I had really long stable gaps in between the really low depressed times and the high times. I've been on Medication for 29 years, every day, I've stopped a few times when I was manic or convinced that I was cured because the meds were working, then you stop and you crash and figure out that the meds have to start again. I've been in Therapy for 29 years, never went a month without seeing my Pdoc (psychiatrist). Its a different life, but if you can get it under control its not a terrible life. When I was younger when Manic I could burn through a few thousand $$$ on crap easy...you learn to put safeguards in place. I've had every type of Therapy there is, I know every coping skill...I've taught every coping skill, so I have a handle on it that isn't easy for everyone to get. Its hard work, but it worth it. I will say it's a unique view to Have BiPolar and treat other people with BiPolar.

All the sex crap and going after strange guys when your manic was never my scene, my father is a pedophile and me and my sibs were his favorite toys, so I was with my husband for 27 yrs. total, he didn't have to worry about that crap.

Other than that life is life. I am currently in the process of seeing if I can stop taking Narcotic meds for the first time in 10 years and so far its not so bad. I am now down from 120mgs of LA Morphine a day and 60mgs of Oxycondone to just 37.5mgs of LA Morphine. Next week I go down to 30mgs. I'm switching to just my Muscle Relaxers, NSAIDS and Topicals. I've made myself my own guinea pig and I'll see how life goes for a while, let my brain re-set and see what my real pain is....it's been a while. But a lot of my pain, narcotics don't affect anyway so...we shall see. I may cave like a yowling baby and go crawling back! lol

Take care,
kat

Oh man Kat, I can relate to some of your story so much. My dad was a really healthy guy too. I think that being exposed to that kind of insanity as a child can really mess with you- body, mind and spirit.

I think it is so cool that you are trying to kick the pain meds, power to you. That is a big undertaking but it sounds like you are doing really well. I stopped taking them (not that I was taking anything like you are) but I think my pain is better without them and more importantly, I feel better emotionally. I hate taking meds. Some you have to take, without seizure meds I instantly have no life but the I have gotten rid of everything else.

I am a single mom too and my son is 14 but even though his dad is deadbeat he loves him and I guess that is the most important thing. Money would be nice but I will settle for him being good to my son and frankly I would be a crummy mother without the break when they are together.

God, I am so sorry about your mental health saga but thank you for being so honest. That sounds horrible, being so out of control. I am glad you have found meds that help that. That is no way to live. Some of us just get more of the fun of life than others huh? You sound particularly lucky...NOT!

Take care of yourself and do this pain med thing slowly...there is no hurry there and you are doing great. Maybe you will feel better...now wouldn't that be a nice surprise. xo

Yeah, I've found that life tends to give me the kind of surprises I don't like. But we all get what we get and have the choice to let it bury us, or climb over the mountain...I tend to be a climber.

One think you'll learn about me is I never "preach" to anyone that which I'm not willing to do myself. I just don't get that kind of attitude, never have. You've probably also figured out I'm pretty direct I say what I mean and I don't get my feelings ruffled by what people say to me. Just one of those kind of people.

I seriously understand the breaks of letting "dad" deal with the kids. My ex-husband was a functioning alcoholic all his life, still is...he did the sports stuff with the boys, luckily my boys were born with a football in one hand and a fishing rod in the other. They were very close to their dad growing up...his new wife is a narcissistic, piece of redneck white trash waste of a human being, who thinks her 5th husband has to be joined at the hip with her, and that has hurt my sons tremendously...I have issues with that. I don't like people hurting my children...I'm help them deal with it, try to pick up the slack, and hope the man I knew from the time we were 15 and still care about, who knows how to be a decent father... will get his head out of his ass before he totally destroys those relationships.

A big part of my stopping the heavy pain meds is a desire to save my teeth, the drugs have taken a heavy toll and I have a greater fear of Dentist than any of the other Specialists I see combined.

I'll be 50 next year, even though my brain still feels like its 20 most of the time. lol So I've set new goals this year. Conquering my fear of flying is a big one, as I'm no longer able to do long driving trips. My (ex)mother in law is my best friend in the world. I got my in-laws in the Divorce. When my father in law passed of lung cancer a few years back she moved down to Charleston, SC to be near her younger son who is a Chef there. I'm in Chapel Hill, NC. Johnny recently moved to Miami, FL to open his own Restaurant, so she's already got us booked for a Miami trip in the fall and it involves an airplane....

Hope you are having a good day and the pain is not winning.

Kat