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47 Replies
valjoy - March 29

Dear cueball, Such interesting reading and now wonder you are so sick with a life of stress, just like myself plus it has been passed down the family line, no different to my family. My Great Grandmother, my Grandfather, my Mother and my Sister all have it and myself. Stress doesn't help and neither does damp, cold weather. I will sit and write a nice long letter to you soon but today I am feeling very off to say the least, the weather is changing and the pain is terrible. I just wanted to let you know that I am thinking of you and hope the Napolea cactus juice helps. Please keep me informed about that. I have tried Goji Berry for months but it did nothing but left me broke, very expensive juice. I hope your Daughter finds her new job soon as that would be a relief to you. I will write soon and tell you my story, extremely stressful like your life.
I am thinking of you. Love, valjoy.x


Jocelyn - March 29

My fibro and Sjogren's is inherited from my mother as well. My mom had Lupus and genetically children of Mother's that have Lupus are more likely to have Sjogren's. On top of the fact that she did have Fibro and mild Sjogren's. I hope my daughter doesn't come down with it. She just turned 32 and that is when my symptoms first started with pains. She complained of knee pain and thigh pain when sitting at her desk. She just brushes it off and says it is because she has to sit so long at her job. Weeeelll....I know plenty of 35 year olds that sit all day and have no complaints. I just keep praying....not her. She already has thyroid problems and she cannot have children because her eggs died prematurely. Doctors don't know if it was because of and autoimmune disease or she was born with it. Geez....I can give it a good guess!


bluesbrrd - April 11

cueball, i have been there and done that, and I feel your pain! I am also one who has chosen to live with more pain instead of the terrible side effects of most medications. I have been on disability for ten years, but I worked with fibro for ten years before that, and it was not easy! The first couple of years I could barely sit up straight long enough to get through the day. By the time Friday came around (the most stressful work day of the week at my job), I would sob all the way driving home because I had just had it! Things got better for me when I switched to a less stressful job.

I have had times of absolutely horrible pain, and then times that weren't so bad. You just never know with fibro! That SUNBURN like neuropathic pain is the worst! If your hair could hurt, or your toenails could hurt, you would believe it! Narcotics are the only thing that takes this to a tolerable level for me! I take a very small dose of methadone - 10mg, which does not have the same "dopey" effects as other pain meds. It might improve your quality of life to try it, especially since you need your concentration in order to work. I started using it after years on OxyContin, and then about six months on hydrocodone when I no longer had coverage for the VERY expensive brand-name drug!

I have also found that eating either Stoneyfield Farm organic yogurt, or Danactive, if you can't get the former, helps a lot with bowel function. I really cannot live without this in my diet! If I feel a little blocked, I will skip a dose of the methodone for 12 hours, and that fixes the problem.
I also take dicyclomine (bentyl) for IBS. I've taken that my whole life! The only anti-depressant I use is Zoloft - it seems to have much lower side effects than some of the others.

You are so fortunate to have a daughter who's a massage therapist!!! Sure wish I did - that's better than any medication! Hope some of this helps!


bluesbrrd - April 11

sinkbee - I like that image! Pins all over, very picturesque! I just put a deposit on an artist-made doll called "Powa the Cactus-flower woman." She has a stuffed body shaped like a saguaro cactus, with a polymer-clay face, wool hair, and handmade shawls and beads draped all over!

It must have been completely subconscious, my selection of the Cactus woman instead of a different figure! Your post just made me realize it!! I am trying to tap into my creativity to bring more joy into my life, and she symbolizes that for me! Funny how things work sometimes...

There are no coincidences!


bluesbrrd - April 11

cueball - I really admire you sticking by your daughter through a tough time! It's not HER fault that her husband was abusive - and you don't want those precious little grandsons to be marked for life by that! If you kicked your daughter to the curb, you would be kicking those 2 boys to the curb also, which would be terrible! It sounds like she is stepping up to the challenge and doing just fine. Your husband just doesn't have those kind of family attachments, and doesn't understand.

I am no stranger to family drama, and you are in such a severely stressful situation on so many levels that it is no surprise at all that your fibro is so bad! Stress will do that! I had several years of intolerable stress here and there, believe me when I say that as things work out, you should feel better! It is wonderful that your husbands results have been so positive - what an ordeal for you both!

I don't know how common the celiac disease is, but your situation alone is enough to cause depression in anyone, especially not knowing if your husband's illness would cause him to lose his life! That's a lot of uncertainty and instability. I have been very careful not to put on weight - I need to lose 10 pounds that's just from inactivity and being sick most of last year. When I had a bunch of surgeries and a hysterectomy my weight ballooned almost to 170 punds, and I am only 5'3"! I can tell you from experience that extra weight increases your pain level. It causes you to retain more water, which puts pressure on nerves and can produce arthritis-like symptoms (like carpal tunnel and sciatica) that will go away once the weight is lost. When I was heavy, I had difficulty using my thumbs at all, and had more severe pain in my hips and joints.

Processed food is just plain bad for you. Keep your food simple, like someone else said. I haven't eaten red meat for 30 years, and I'm sure that has helped me keep weight off. Only whole grains, foods with fiber take longer to digest, and counter the fat content. Eat whole fruit instead of juices - too much sugar which is processed to quickly without the fiber and satisfaction of chewing on the fruit. There's no magic bullet, but diet is very important to me.

I hope venting helps! Sure helps me!! Hang in there!


bluesbrrd - April 11

When you are having an active fibro flare, and your muscles are in spasm, trying to exercise is about the WORST thing you can do! Just take a walk, don't try to "exercise" the way normal people think about exercising. You need moist heat, and massage or physical therapy.

I once had a physical therapist try to make me exercise when I had a non-stop neck and shoulder spasms extending into my hands. She didn't know what she was doing, and it made things much worse. A muscle in spasm is an INJURED muscle, trying to force it do do repetitive movements will just injure it more. Think of a muscle STRAIN - exercise is not the prescription for that. Also, when I did start to do gentle aerobic exercise, I had to cut the number and the speed of the repetitions IN HALF or I was doing more harm than good. This is why it is difficult for people with fibro to go to any kind of excercise class and do things at the same speed as everyone else. I even managed to start a flare in a GENTLE YOGA class - because I did too many reps! Peer pressure is a biyatch!

Don't try to exercise like the normals - it will hurt you!!


bluesbrrd - April 11

JOCELYN Your story is very similar to mine - same onset age, same # of years with. I was very sick last year with some abdominal spasms, and as a result got very weak. My massage therapist has been a godsend - she makes my body feel practically normal sometimes!

I have been trying to do some more stretching and walking, but it is hard! Fatigue is probably worse of an inertia-proponent than the pain. I want to use it so i won't lose it. My biggest problem is that my main strategy for combating the pain is to keep my mind focused on SOMETHING, which is usually television, or the internet. If I don't, i find the pain overwhelms me. It is very difficult for me to just "chill" or relax because of this. I have to break this pattern if I want to get stronger.

I have a bad problem doing repetitive motion of any kind, like using my right hand to scrub dishes or dust. I can walk just fine, but my core strength is so weak that when I do anything that puts my body in a "balance" kind of position - say, leaning over the sink slightly to brush my teeth, I can't keep it up for more than a minute or two. Bending over at the waist to clean something doesn't work for more than a couple of minutes, either!

Many days the thought of raising my hands over my head in order to wash my hair while showering seems to be not very doable for me. It is so easy to just not try to do anything! I am really trying to motivate myself, or I will have no life. It is hard to push yourself when you have so many ways your movement is restricted. I have pushed myself this week, and it has not been fun. but I'm not ready to just roll over and die, either! I'm not a very disciplined person anymore - I have been getting so used to letting whatever slide, because of fatigue or pain, I guess 10 years on disability will do that!

Not dead yet! ; )


cueball1958 - April 11

I keep seeing people reference fibromyalgia "flare ups" and I don't understand this. My fibromyalgia NEVER stops hurting. It hurts worse on some days than others and the throbbing is more intense some days, but there has not been one day in my life for the past 16 years that I have not woken up to PAIN, ALL OVER MY BODY, from head to toe. Every spot I touch on my body feels like a bruise, even the tips of my fingers. What I have had to learn how to do is live with it. It's a part of me. It hurts even when I don't touch it but it hurts worse when I touch it. So I question a lot of times, do I really have fibro or do I have a nerve disease? I have told the doctors over and over how I feel and they just tell me I have fibro and I have to try my best to deal with it but I don't believe that fibro hurts everywhere. The only place I don't have pain and this is really weird is on my ears. It's the only spot on my body that doesn't hurt, ever. Even my face hurts. I think a lot of my pain comes from my spine. I have asked the doctors many times to do tests on my spine to see if it is causing my widespread pain and they all tell me that it's just the fibro, but does anyone else feel like their body is on fire, with a bad sunburn, along with the bruise like pain. My whole body burns and aches and throbs and hurts non-stop, 24/7? Nothing helps, and I've tried it all. Neurontin, Lyrica, Cymbalta, everything and nothing helps. All the drugs do is make me sleepy or in a fog or give me nightmares. I wish I could take off work and travel to a doctor somewhere, anywhere, who will listen and try to find out why I feel like I do and why nothing I have tried helps but I can't afford to take off work long enough to pursue it. Please pray for me. It gets worse and worse every week of my life. I can't sleep. I can't take sleeping pills, it causes irregular heartbeats and the irregular heartbeats wake me up. I have tried every form of sleeping pill, prescription and over the counter and they all have the same effect. Why take them if you can't sleep taking them? I feel like I am hopeless in finding something to help. The cactus juice is a waste of time and money. Doesn't help. The only time I feel any relief at all is when I lie in water hotter than the burning throughout my body. And I can't live immersed in hot water all the time. But it is the only relief I get. The second I come up out of the hot hot water, the pain is there, burning and hurting. If I put my hands in front of the heater in the car on its highest setting with the fan on its highest setting, the hot air makes the burning and hurting stop. If I immerse my hands and feet in hot hot water, the pain and burning stop until I take my hands and feet away from the heater, then it's right there again. So it really doesn't go away, it's just that I have subjected myself to temps hotter than the burning in my body. So hard to understand. By the time I get off work everyday, I have to go home and stick my hands in hot hot water every day and that's the only relief I get. I have to work on a computer all day at work and I have to work with books and microfilm and moving things around on shelves and cabinets and making space and stamping materials and I don't know how much longer I can work. I can retire in 6 years. If I can just make it 6 more years, I can at least sit home in my hot baths all day and get some Not much of a life. I can't even hold my grandkids on my lap or pick them up the younger ones anymore, the pain is too bad in my legs and arms. I can still hug them, it hurts but I do it anyway. Gets harder and harder to wash my hair. Can't afford to go to the beauty shop for someone else to wash it. My quality of life is getting gloomy and I hate that. I love the Lord with all my mind, heart, body and soul and I trust Him for everything. I tell Him everyday that if my purpose on earth is to keep working and being a good mother, wife and grandmother, please send some relief for this pain. I just about can't take it anymore.


cueball1958 - April 11

Thank you for your kind words and encouragement. I will talk to the dr about the methadone. I am so scared of getting addicted to anything and I have heard so many horror stories about people getting addicted to methadone, having to take more and more to get the same effect and the long term things that the drugs to your body. Every time I turn around, there's another class action law suit for a drug. My prayer is for anyone having to live in the pain we live in to be healed and for someone to find a cure for this horrible disease that we have to live with. We have a 30% chance of rain today so my fibro is hurting so bad and my body is burning so bad from the neuropathy that I am about to lose my mind. It seems worse with a 30% chance of rain than a 90% chance. The barometric pressure makes it so bad. Some days I want to pull my hair out and scream and today is one of those days. Can't get any work done. No energy. I am so thankful to have a job where I can work at my own pace and am not micro-managed by anyone and I don't have daily deadlines, etc. It is truly a blessing. God put me in this job, I have no doubt about that. He gave me this job because He loves me and the people are wonderful and understanding and patient and I couldn't ask for a better job. Yet it's getting harder and harder to even do what I'm doing. I am still grateful and thankful for it. I give all the praise and glory for everything to my Lord and Savior Jesus Christ and I know I can do all things through Him who strengthens me, and for some reason, He has chosen for me to be a weak vessel at this stage in my life, maybe for someone else's benefit. I am willing to be used for whatever will glorify His kingdom. I must be very special for God to feel that I am capable of the suffering. So far it hasn't killed me and I keep telling myself that it could be worse. I could have a horrible, incurable disease that is terminal. My disease, although it's horrible and incurable, is not terminal and it won't kill me. If people with cancer suffer this way, how do they do it? If the pain can be any worse with cancer, how do they do it? If my pain levels get any worse, I don't know what I will do.


Jocelyn - April 11

Well...what it's Fibro is differnt. Your pain is more intense than mine, but most likely as intense as some people on this website. I often wonder if I truly have ALL Fibro and that there isn't something else wrong. I am pushing doctors to do extra tests to see if something else shows up. Perhaps you need to change to a new doctor. Maybe one that deals with just Fibro, or maybe someone who would start you all over with a diagnosis. It can't hurt...well it can, driving and sitting in their offices. I have an elevated sedimate rate that shows I do have imflammation in my system. For example, my Rheumy believe's the high sed rate comes from my having Sjogren's on top of Fibro. But, I had my heard doctor run a C-reactive Protein test to see if that is out of range and it is. I am waiting to hear from her to see what she things is elevating this level too. There could be many things that are causing your pain and it could end up all be Fibro. Just never give up looking and googling the internet. You just might fall upon something that directly relates to your situation.

Please keep in touch. I will say a prayer for you. I will pray that you are able to get some releif. I cannot retire for 6 more years and I ma counting the days too. I'm just afraid by the time I reach that age, I will be bed ridden and there will be nothing I can enjoy.

Take care.


bluesbrrd - April 11

A fibromyalgia "flare" ca last for days, weeks, months, or years! Then it can go into remission, and not bother you too much. The first years was the worst - it's never been that bad again. Then it went into "remission" for ten years, where I was able to work, and did not have to take pain meds. I still had to get occasional physical therapy and some trigger point injections, but I was able to work as long as I did because I got a massage EVERY WEEK. That enable me to work longer, and kept the stress in my neck and shoulders, from being at the computer, from getting out of hand.

If you work at a computer all day, you need to be mindfull of your posture, and the ergonomics of your desk/chair setup. When you are typing, your arms should be bent at exactly a 45 degree angle, so adjust your chair for that. You may also need to try an ergonomic keyboard. If the typing is hard on your hands, arms and upper body, consider getting a voice operated computer program like Dragon Dictate, that's a speech recognition software. In order to work 8 hours, I had to take stretch breaks, and I had to have a 30 minute walk at lunchtime to unkink my body. If I skipped this, my hips and lower back would scream at me!

I think you need to see a rheumatologist, and you need physical therapy. It can address specific trouble spots, and you should start feeling better. it should certainly help you to survive the next 6 years!!

One thing that increases fibro pain is menopause. Once I had the hysterectomy, I felt pretty good. but when my body's hormone levels dropped significantly in a few weeks, the pain got worse with a vengeance! I tried taking estrogen replacement, but it started to reactivate the endometriosis that could not be surgically removed. I got a terrible spasm/migraine in my neck that would not release FOR 4 MONTHS! I thought i would lose my mind, because NOTHING worked, not trigger point inhections, not physical therapy, and I though i would lose my mind! It did stop, finally - I think my body had to adjust to the different hormone levels, and the shock of all the surgeries and illness I had had for the last 3 years. I had terrible pelvic pain and could barely walk. It did get better, but it took time. I feel better now than i did then, that's for sure.

Don't be overly worried that you're going to become addicted to pain meds. if you had addiction disease, you would have probably been abusing some substance or other by this point in your life. Normal people without the disease are in general not going to become addicted. The main thing is just to stick to a small dose, and don't have unrealistic expectations. More is usually not better, in my experience, but you have to experiment to see what works for you.

Methodone can be very dangerous if you up the dose. it can kill you, so your doctor has to know you understand the danger, and that he can trust you to take it properly. You should keep all dangerous medications like this locked up, not sitting in your medicine cabinet, where curious teenagers or little kids might accidentally get ahold of it. But remember, even aspirin can kill you if you take too much!

Whatever stressors you have in your life, you need to seriously consider how you can reduce them. Being a perfectionist, or puching yourself too hard, seems to be a very common trait among people with fibromyalgia! Go easy on yourself, and relax concerning other people's expectations of you. Learn to say no without feeling too guilty. Seeing a therapist can really help you deal with the overwhelming experience that is life with fibro, and can help steer you through until you feel like your coping strategies are starting to get stronger. Sometimes when you're in so much pain, you can have difficulty making good decisions. This is what I probably struggle with the most! Sometimes you need an outside observerto help you, someone you're not emotionally invloved with.

I certainly hope some of this helps! Just try to take one issue at a time, because it's easy to become overwhelmed! I still do, even after 25 years!!


kvc33 - April 13

cueball, have you looked up Reflex Sympathetic Dystrophy? It causes nerve pain and the burning you describe doesn't sound like fibro to me. Are your muscles weak and stiff? If not,I don't think you have fibro. You know that meds aren't the answer for you, you've tried them. I think perhaps there has been some damage to your brain that is causing a perception of heat and pain that shouldn't be there but I don't know. Have you had tests done for food allergies and vitamin and mineral deficiencies? You would most likely need to see a naturopathic physician for that. Also, you could have your neurotransmitters tested to see what's going on regarding the chemical messangers in your brain. Did your pain start in one area and then move to the rest of your body? Please do whatever you need to do to get some help, your job is of no use to you if you have no quality of life and soon won't be able to do anyway. Have you tried hypnosis or any other kind of mind/body therapy? Did you know that we can actually change the temperature of our skin by focusing on it? I would suggest that you spend many sessions during the day in a relaxed state imagining that your body is cold. I have tried the meditation technique and found that I can change a feeling of pain into comfortable heat within a few minutes. I admire your faith although I don't understand it. I just can't love a God who allows people to suffer so much and doesn't even tell them what the purpose is, if there is one. I know that animals suffer too and that it has nothing to do with an issue of purpose or faith, it has to do with being a living being. I'm sorry if my views offend you, you need to do what works for you.


cueball1958 - April 13

No offense taken at all. My faith is a personal walk with Jesus Christ and unless you have experienced that, it's hard to understand. He is my closest and dearest friend and has always been there for me. He doesn't allow us to suffer. He never promised that we wouldn't though. It's to teach us. I do so appreciate your insight into my problems. I will definitely be seeking the tests and drs you have suggested. I just knew there was something going on with my nerve endings. Many, many years ago I had a headache for 36 days and the drs back then did an EEG and determined that I had a "cluster" headache, however they also found that my EEG was "abnormal" but they never did any further tests to find out why. I've had cat scans since then of my head and nothing has ever shown up but that was way before MRI's were discovered and the cat scans weren't all that advanced. It was back in 1984. It was after my daughter was born via emergency C-section due to rupture of placenta previa. So there may have been lots of contributing factors. But my husband (ex now) was in the Navy and the Navy doctors were by no means specialists in any area, just genreal practitioners and they only sent you to specialists if you were at death's door. And you had to have referrals back then. Stress has been a major part of my life and I think that has contributed to a lot of my physical ailments. My faith is the only thing that has kept me sane. I've had shingles due to stress so the shingles virus lives in my body. And I understand that it lives there forever once it is there and stays dormant until it flares up. I've been through 2 divorces, first one due to infidelity by my first husband, over and over and him being a Navy man, he thought it was ok to have a girl in every port. I did not want my 3 daughters seeing me just "put up with that" and thinking it was ok. He was also OCD and did "inspections" of our home and I had to keep it absolutely spotless at all times, plus raise 3 daughters pretty much alone, plus work. When I left him, I felt like the weight of the world had been lifted off my shoulders. My second husband was younger than me, swept me off my feet and treated me like a princess, but after we got married, he decided he was gonna be big bad stepdad and try to beat my children and curse them, wasn't going to happen. So I left him because he was mean to my girls. So I remained single for many years after that and then I met my current husband and he is much older than me and my youngest daughter has had issues all her life about being independent and being able to make it on her own and finally she is starting to make better choices in life and is on her way to becoming a mature responsible adult. It's about time. She is 30 and has 4 kids, (hence the bad choices), but she has completed massage therapy school and is going today for an interview for a job. She and her children have been living with me and my husband for a year now and the stress has been almost unbearable, because my husband is tired of them being there and ready for them to be gone and so he stresses me. She is moving May 1st so life is looking up for all of us, but the pain has become almost unbearable through it all. My whole life has been drama. I'm so ready for some relaxation and rest and I only have 6 more years and I can retire from my job. I also have to take care of my elderly parents who have so many health issues and they live 25 miles from me. My mom just had shoulder surgery (she lives with a heart condition and they almost didn't put her to sleep for the shoulder surgery but the pain from the shoulder was too unbearable, torn rotator cuff and bone spurs), my dad just had skin cancer surgery and my oldest sister has had to go back to school and get her masters in order to keep her job (at 57 years old) and my youngest sister is a phlebotomist and her job is very demanding and she can't take off to help care for them, and blah blah blah, anyway, it has been left up to me to also care for them when they get sick. I'm not sharing this for pity. I'm sharing it to explain the stress in my life. I am the caregiver, the peacemaker, the one everybody depends on. I've never had even the luxury of saying "No". It wasn't an option. When you have a family, you love them unconditionally and you help them and I couldn't sleep at night if I said No or turned my back on them, so I keep on doing what I have to do and I whine a lot. Not to them, but to people like you, who can listen and whose opinion is appreciated, but it won't affect my life in any way if you approve or not approve. And your suggestions and help is so very appreciated. In the very near future I am going to seek help from a specialist, maybe 2 or 3 and find out what is going on with my body or I really think I won't make it much longer. Today, from the moment I woke up, both of my forearms are burning like they are on fire and so are my feet. Neuropathy is what I think it is called. I can rub on my arms and the pain subsides in the spot that I rub but it returns immediately when I stop rubbing any particular spot. I agree that the pain sensors in my brain are totally messed up. They are telling me that I am in pain 24/7. My bones hurt, my muscles hurt, everything everywhere hurts. I have thought about trying to save the money and go to one of those healing spas, those hot springs, mud places where they cover your body in this hot mud and then you get in these hot springs. Even if it didn't heal me, it would feel wonderful I'm sure. But that won't happen for a long time. We are still paying on hospital bills where my husband has had 3 major cancer surgeries and the bills are phenomenol even with medicare. We can't afford supplement insurance. So we owe tens of thousands and thousands of dollars, so every extra dime we have goes to try to help pay these down. He has survived prostate, bladder and pancreatic cancer in the past 3 years. So on top of taking care of everyone else, I have been the sole caretaker of my husband. He has no family who will help. He has a sister and she owns a bakery and doesn't have time for him. But he is better now. So life has not been easy, but we were never promised a rose garden and I have always believed when you are handed lemons to make lemonade and I have tried my best to always look at the glass as half full and count my blessings and I just pray that the good Lord gives me the stamina and strength to keep pushing on until He calls me home. But this pain I live in makes it so hard. Just remember God doesn't cause our suffering. We do a lot of that ourselves by our choices. But He is always there to help us through the suffering. When I think of what He did on the cross for me so that I could live eternally, well, it makes it all worth it and makes me feel guilty for even whining about any of it. I know heaven is real and is waiting for me. One of my grandsons who is now 6, when he was 3, his heart stopped and during that time, he said he died and went to heaven and he saw Jesus and he rode on a horse and petted the lions and the lambs and saw the river and the fruit trees and Jesus let him pick and eat one of the fruits off the tree but it wasn't like a fruit we have here but it was so good and the colors were so beautiful and the water was so clear you could see the fishes in the water and Jesus let him touch the water and it was smooth and Jesus was beautiful and He told him he couldn't stay, it wasn't his time yet, he had to go back to him mom and he woke up and told her all about his visit with Jesus and they called me right away and he told me on the phone about his trip to heaven. Nobody will ever be able to tell me any different, ever. I believed before that and now I know that everything my grandmother taught me all my life is true. There is a better place waiting for us after we die. A beautiful place that we can only imagine how spectacular it is. I pray that you too can one day have hope in this beautiful forever place called heaven and that God will make himself known to you and you will feel the peace that I feel knowing that no matter what I have to suffer on this earth, Heaven will surely be worth it all. God bless and you will from this day forward, forever be in my prayers.


kvc33 - April 13

Wow! The life of stress you have led is almost unbelievable. Did you know that some people have pain from shingles for years, I think maybe forever? It is called Postherpetic Neuralgia. The headache you had is a good clue I think. If you only had one, I don't think it would fit the definition of a cluster headache. Cluster headaches come and go and can last for days or weeks but if you only had only episode it makes me wonder if the doctors were just guessing. I'm sorry about your medical bills, I'm in Canada and the government takes care of all of that for us. Everyone is covered regardless of income or whether or not they are working. If I got cancer all the treatment cost would be covered although I'm sure there would be some 'incidentals' that I would have to cover. Our system is very good but not perfect. We have to pay for our own ambulance ride which I think is nuts. If you want to get your neurotransmitter levels tested you can do what I did and get it done through a website called integrative psychiatry. It is a kit and a urine test you do at home. Costs a few hundred. The information was invaluable to me. It showed that I have very high dopamine levels which was cause by a drug I took (prescribed) and it resulted in mental illness for me. I just have to wait for my body to get rid of it which will probably be years. I have been in detox for 11 months now and have now started weaning myself off of clonazepam as well as my memory and mental illness were getting worse lately. So soon I won't be taking anything on a daily basis except ibuprofen and the only prescription meds will be for menstrual cramps and migraines. I think part of the reason you have not found a med that has worked for you is that you have not been properly diagnosed. Whomever you see, make sure they know your whole medical history. Since your faith is so strong you could meditate on Heaven every day and imagine yourself being there and pain free now. Our thoughts do have an affect on our brain chemistry and you might be able to shut down some of the pain signals. When life on the outside is so bad we can always retreat to the inside and imagine whatever we want! I wish you healing in every way and good family relations.


cueball1958 - April 13

You may not believe as I do, but you are an angel to me. Thank you for your sweet, kind, encouraging words and I will make sure I try to find the time to get a proper diagnosis and I'll let you know what I find out. Good wishes and peace and prosperity and excellent health for you is my prayer!


Jocelyn - April 13


I'm so sorry to hear that you are so unwell. I agree with KVC33, that it is possible that you have been misdiagnosed or that you may have overlapping diseases. A new doctor may be the best place to start.

Are you on disability? I live in the United States, and I have medical insurance through my company so my medical care is excellent, but my mother was on Medicare and went to one of the largest medical hospitals in the United States to be treated for Cancer. They accepted her Medicare and she was not billed for anything and she got the best care ever, they have the cutting edge tools etc. I'm not sure a smaller hospital would have done that. Perhaps you have a large medical hospital near you. It is worth a try. I've switched all my doctors to doctors that are at this medical hospital. I feel the medical care is top rated and people from all over the world come here to be treated and I figured, I live right near one of the best hospitals in the world, so why not use it. All the doctors work right in the hospital so it makes it easy and they are all connected by networks so each doctor know what the other one it doing. I don't know where you live, but there must be a great hospital near you.

Please let me know if I can help you with any information pertaining to medical doctors, hospitals etc.



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