I am now experiencing pain bilaterally. Will discuss with neurologist in two weeks,
Funtsie said:
Karen do you have TN bilaterally? I have it bilaterally and now GN, bilateral pains. Wondering if anyone else has this.
Hi Karen,
I too was recently diagnosed with Fibromyalgia although I have disputed this and am now under a professor of immunology who is trying to get to the bottom of my non-MS symptoms which my neurologist originally thought may have been Lupus on top. I had a differing of opinion from my old rhuematologist and my new. My old one stated I have Sjogrens and my new one, regardless of Schirmer tests and salvia tests etc, has stated I have fibromyalgia. Although upon my return visit this week stated now she wasn't sure...
I am lucky to have a great band of specialists, excepting my rheumo which I intend on changing, as I deal with more than just MS and GPN...
You're doing the right things by pushing and requesting information and tests. If there is no physical obstruction that can be seen it is more than likely due to inflammation of the 9th cranial nerve within the CNS. Sometimes lesions can be so small that MRI's do not pick them up, although the newer 4T magnet MRI's are more sensitive, and I believe there's a 7T magnet out now but they are as rare as hen's teeth here. We are only just starting to change over to 4T's now, so the 7Ts will be way off. The stronger the MRI machines are, the more detailed they become in their imaging.
I would strongly recommend that you try acupuncture. Acupuncture is brilliant for TN and GPN, plus it also helps to balance the immune system. I would also suggest that you try taking high strength fish oil. One needs to ensure the EPA content of fish oil is 1 gram or more for it to be effective in reducing inflammation in the body. Other supplements like Flaxseed oil as well are very good in reducing inflammation but one must take them at optimal levels.
Yes, taking a cocktail of medicines is not good. What is frustrating here in Australia is that most specialists don't look at the whole picture of what a person is on when they prescribe a drug. They don't consider for a moment that there could be interactions etc., and it is often left up to the patient by either asking their pharmacist or GP, or they find out the hard way by landing in hospital because of an inter drug reaction. All specialists and GP's should look at the whole picture when prescribing medications.
I have a question for you, and for others on here. Have you all had your Vitamin D and B12 levels tested? I ask this as Vit D deficiency is now linked to a number of disorders within the central nervous system. B12 deficiency can lead to all sort of disturbances in the CNS as well. So it would be truly worth while getting these levels checked. Optimal levels of Vit D, in order to reduce inflammation, is said to be between 150-200nmols. Lots of research out there on this.
With these vitamins we should also ensure we get them checked at the beginning of each season as they fluctuate. Now some of you may be reading this saying but I spend loads of time outdoors. I can tell you that that doesn't mean anything if a) you wear sunscreen; and b) have a faulty gene when it comes to converting Vit D in the body. So unless people have their levels checked regularly over a year they really do not know what their body is doing, and whether there is a potential issue.
Yep, this forum is great as people understand as we all go through this with varying degrees. I have also found this with MS, that no-one else really gets what I am going through because 'I look well'. They have no clue as to whether I am numb, have terrible tingling, or neuropathic pain, or weakness, trouble with my sight, terrible fatigue etc., because they cannot see this, so therefore they think I am okay... I find my MS support forum is also great for this very reason. :-)
So it's really nice to connect with people who understand. It's also great to be able to share experiences and share thoughts on ways to manage. It's also interesting to read about peoples journeys with surgery etc. I only wish I had have found this place 5 years ago when I finally got diagnosed with this GPN. I know my first attack was in 99 though but it took that long to diagnose as it settled down inbetween and used to give me twinges. Then it came back with vengeance but I have the beast more controlled these days due to treating underlying inflammation and eliminating things that I know trigger it ;-)
@ Preety, yes I'm in the same boat - MRIs and CT scans are all clear, every time I have a scopy down my throat the neurologist sees nothing. I've even been to an oncologist and you won't believe I went in there HOPING they'd find something - but nope, nada. Very frustrating. Because of finding nothing I'll never be a candidate for surgery :(
Thoughts to all today
x
You know what's frustrating about that granadam, is that nuerologists know that the CNS can be under attack a long time before they see actual evidence eg: lesion. Many people with MS can experience a plethera of symptoms of numbness, pain, neuropathic pain etc., a very long time before there is any evidence of lesions.
They are often sent for carpel tunnel tests because their hands are numb only to be told there's nothing wrong. CAT scans performed (this was before MRIs) In fact patients like this are often told it is in their head, or they are depressed. I was one of these patients, and I have spoken with many other people who have been in the same boat. I had symptoms showing I had an issue. I even had balance and hearing tests that stated that my results were compatible with a lesion on my brain stem, yet no other tests found anything wrong with me.
Fast forward 20 years and I couldn't walk and also had my first bout of GPN but thought it was related to an endoscope I had. I was still being told by a neurologist that it was all in my head. Had a few MRI's and over the next few years after continual attacks and I started forming lesions from the compounding attacks. What was frustrating was I had lived for over 20 years having awful attacks on and off, and then having specialists tell me I was imagining it which of course sees you having no support from family members because they go off what the medical professionals say.
I actually remember vividly my father telling me that I was a hypchondriac - only for us to learn a week later that I actually had MS. It was an awful confrontation too as he got angry with me and called me a hypochondriac and told me I needed to get my act together. He could not take those words back and felt so bad for saying them when he learned that for all these years I had been telling the truth and no-one was listening or believing me. Mind you I only ever spoke up and said things to my family when I was really scared about what was happening to me.
I still remember saying that night I am really scared because I cannot add up simple numbers Eg: 1+1. I knew I knew the answer but couldn't work it out. That was terrifying for me. Then to have my head bitten off with I have never heard anything so ridiculous in my life and be accused of making these things up just ripped my heart out. I felt that I had no-one to turn to. My diagnosis was a huge relief for me. A bit off track about the GPN but it's all inter-related to my MS and just wanted to demonstrate that it can take a long time before any 'evidence' as in on an MRI is apparent.
So neurologists know full well that often symptoms appear a long time before actual damage to CNS and/or cranial nerves can be seen on MRI's. Therefore they should monitor people closely who complain of GPN and have no obvious reasons for it. It is wrong to dismiss patients just based on negative test results to date.
I always thought the negative tests results were ruling out abnormalities, such as lesions/cancer. To me, the negative test results were confirming GPN. Ended up, I had a healthy vessel compressing healthy nerves, 9 & 10. The compression did not show on several MRIs until I had one done with/without contrast and 3D-Fiesta. It was the Fiesta slicing that picked up the compression. Insist on this MRI. There was nothing damaged in me, just nerves and vessels that did not play nicely together. Praise God the other tests all came back negative.
Kaz, sorry that your journey was isolated for so long. A support system is crucial. The stress of the lack of support and compassion must have been unbearable. Great advice with the supplements. I do take 4000IU of vitamin D, one pill every other day, Nordic Naturals Complete Omega-3,6,9 1000mg 2 pills each day. Before the surgery I also took Ceralin Forte for a short time, and may start taking it again as my nerves are bruised from the MVD and "Ceralin Forte is formulated to provide well-rounded support for brain and nerve protection, addressing multiple pathways involved in neurological health." All three of these supplements were prescribed to me by a chiropractor that practices kinesiology. This is not covered by my insurance, but I am totally in agreement with. I have never had a side effect from a supplement prescribed this way. Expensive, but worth it. So if you can find a reliable person that practices kinesiology, your body will tell you what you need.
I also support acupuncture. Awesome advice to search for clinics that have trainers under the supervision of professionals. Here in NY a good acupuncturist cost about $125 for an hour and is not covered by insurance. For that I had the whole package, aroma therapy, heat lamp on my face where the trigger spot was, music, and an expert. It was soothing and provided some comfort, for a short time. What was covered by my insurance was an institution like atmosphere, cold, white, stuffy. It did nothing for me. So if one treatment doesn't work, try another facility.
MVD is a huge surgery. A neurologist is not going to drill into a scull without feeling confident that there will be success. It is likely that there will be some setback as a result, hopefully for a short time. Some of us in this group have lost hearing, others quality of voice. The benefit has to be greater, elimination of episodes. Yet, there are no guarantees the procedure will be a success. We just continue to do our own research through groups like this. Unfortunately, we are the experts on this condition. It is rare. We know more than most, sadly. Still each of us are unique. So sharing what works is the best ammunition we have. We can give it a try and pray for the best.
Hi Kaz
I should have been more clear about the first neurologist when he said it was fibromyalgia “gone to my head” he meant that fibromyalgia often mimics big neuro disease. I found him incredibly dismissive but I also figured out at a neuro exam at 9:00 am will not be to my advantage because that’s when I feel the best in the day. If anyone tried to touch me at 9:00 pm I’d probably bite!
Yes, I think CNS disease is a long time in the making. I look back to an episode of unexplained severe sore throat that lasted for six months, and that was twenty five years ago. Ear ache problems before then diagnosed as allergies, etc. I even had a positive ANA for Lupus in '95 but the rheumatologist “downgraded” me to fibromyalgia. Haven’t tested positive since.
Sounds like you know more than my GP! And also you’ve had quite the journey.
Thanks for the reminder about the vitamin D and B12 levels, I do have problems, and sometimes am totally empty of them. My GP does not keep an eye on this so making an appointment with endocrinologist. I will give the fish oils a go.
Also thanks tip about acupuncture. I live on a small island, population 400 and need to travel for that. Driving in car is big trigger, it’s the vibration. But there is a shiatsu person not too far away.
I need to sell my house and move to the city and have tried but housing market in my area collapsed.
My doctors are not dismissing GPN or TN now, it’s a matter of getting to the neurosurgeon. But my GP tells me not to get my hopes up, she thinks the problem is way to close to the brain stem. I will know more in two weeks.
Thanks for being there. Thanks for sharing
Kaz said:
Hi Karen,
I too was recently diagnosed with Fibromyalgia although I have disputed this and am now under a professor of immunology who is trying to get to the bottom of my non-MS symptoms which my neurologist originally thought may have been Lupus on top. I had a differing of opinion from my old rhuematologist and my new. My old one stated I have Sjogrens and my new one, regardless of Schirmer tests and salvia tests etc, has stated I have fibromyalgia. Although upon my return visit this week stated now she wasn’t sure…
I am lucky to have a great band of specialists, excepting my rheumo which I intend on changing, as I deal with more than just MS and GPN…
You’re doing the right things by pushing and requesting information and tests. If there is no physical obstruction that can be seen it is more than likely due to inflammation of the 9th cranial nerve within the CNS. Sometimes lesions can be so small that MRI’s do not pick them up, although the newer 4T magnet MRI’s are more sensitive, and I believe there’s a 7T magnet out now but they are as rare as hen’s teeth here. We are only just starting to change over to 4T’s now, so the 7Ts will be way off. The stronger the MRI machines are, the more detailed they become in their imaging.
I would strongly recommend that you try acupuncture. Acupuncture is brilliant for TN and GPN, plus it also helps to balance the immune system. I would also suggest that you try taking high strength fish oil. One needs to ensure the EPA content of fish oil is 1 gram or more for it to be effective in reducing inflammation in the body. Other supplements like Flaxseed oil as well are very good in reducing inflammation but one must take them at optimal levels.Yes, taking a cocktail of medicines is not good. What is frustrating here in Australia is that most specialists don’t look at the whole picture of what a person is on when they prescribe a drug. They don’t consider for a moment that there could be interactions etc., and it is often left up to the patient by either asking their pharmacist or GP, or they find out the hard way by landing in hospital because of an inter drug reaction. All specialists and GP’s should look at the whole picture when prescribing medications.
I have a question for you, and for others on here. Have you all had your Vitamin D and B12 levels tested? I ask this as Vit D deficiency is now linked to a number of disorders within the central nervous system. B12 deficiency can lead to all sort of disturbances in the CNS as well. So it would be truly worth while getting these levels checked. Optimal levels of Vit D, in order to reduce inflammation, is said to be between 150-200nmols. Lots of research out there on this.
With these vitamins we should also ensure we get them checked at the beginning of each season as they fluctuate. Now some of you may be reading this saying but I spend loads of time outdoors. I can tell you that that doesn’t mean anything if a) you wear sunscreen; and b) have a faulty gene when it comes to converting Vit D in the body. So unless people have their levels checked regularly over a year they really do not know what their body is doing, and whether there is a potential issue.Yep, this forum is great as people understand as we all go through this with varying degrees. I have also found this with MS, that no-one else really gets what I am going through because ‘I look well’. They have no clue as to whether I am numb, have terrible tingling, or neuropathic pain, or weakness, trouble with my sight, terrible fatigue etc., because they cannot see this, so therefore they think I am okay… I find my MS support forum is also great for this very reason.
So it’s really nice to connect with people who understand. It’s also great to be able to share experiences and share thoughts on ways to manage. It’s also interesting to read about peoples journeys with surgery etc. I only wish I had have found this place 5 years ago when I finally got diagnosed with this GPN. I know my first attack was in 99 though but it took that long to diagnose as it settled down inbetween and used to give me twinges. Then it came back with vengeance but I have the beast more controlled these days due to treating underlying inflammation and eliminating things that I know trigger it
Hi Donna
Yes, all the early tests I had were to rule out thinks that might kill me quickly instead of slowy! Tumour had to be ruled out as well as stroke. One old ENT at the pain clinic thought I might be have a small bleed. Also AVM had to be ruled out. And esophageal cancer when my swallowing was all wrong. And yes, the Fiesta slicing did pick up abnormal artery but it was decided that one didn’t look far enough up the line.
Good to hear so many complimentary things can help. This disease has flattened me financially the past three years. I’m a writer, a late bloomer, second novel came out a week before first bad attack but I could do little to promote it. My writing now is just scraps and no coherence. But I can still draw and work with images.
I’ve taken a scan through the posts and see you’ve had the MVD. A real big deal. Takes a lot of courage to have your head drilled into. Wishing you continued recovery./>
Donna said:
I always thought the negative tests results were ruling out abnormalities, such as lesions/cancer. To me, the negative test results were confirming GPN. Ended up, I had a healthy vessel compressing healthy nerves, 9 & 10. The compression did not show on several MRIs until I had one done with/without contrast and 3D-Fiesta. It was the Fiesta slicing that picked up the compression. Insist on this MRI. There was nothing damaged in me, just nerves and vessels that did not play nicely together. Praise God the other tests all came back negative.
Kaz, sorry that your journey was isolated for so long. A support system is crucial. The stress of the lack of support and compassion must have been unbearable. Great advice with the supplements. I do take 4000IU of vitamin D, one pill every other day, Nordic Naturals Complete Omega-3,6,9 1000mg 2 pills each day. Before the surgery I also took Ceralin Forte for a short time, and may start taking it again as my nerves are bruised from the MVD and “Ceralin Forte is formulated to provide well-rounded support for brain and nerve protection, addressing multiple pathways involved in neurological health.” All three of these supplements were prescribed to me by a chiropractor that practices kinesiology. This is not covered by my insurance, but I am totally in agreement with. I have never had a side effect from a supplement prescribed this way. Expensive, but worth it. So if you can find a reliable person that practices kinesiology, your body will tell you what you need.
I also support acupuncture. Awesome advice to search for clinics that have trainers under the supervision of professionals. Here in NY a good acupuncturist cost about $125 for an hour and is not covered by insurance. For that I had the whole package, aroma therapy, heat lamp on my face where the trigger spot was, music, and an expert. It was soothing and provided some comfort, for a short time. What was covered by my insurance was an institution like atmosphere, cold, white, stuffy. It did nothing for me. So if one treatment doesn’t work, try another facility.
MVD is a huge surgery. A neurologist is not going to drill into a scull without feeling confident that there will be success. It is likely that there will be some setback as a result, hopefully for a short time. Some of us in this group have lost hearing, others quality of voice. The benefit has to be greater, elimination of episodes. Yet, there are no guarantees the procedure will be a success. We just continue to do our own research through groups like this. Unfortunately, we are the experts on this condition. It is rare. We know more than most, sadly. Still each of us are unique. So sharing what works is the best ammunition we have. We can give it a try and pray for the best.
I am not a doctor, and have no advice for the cough. I have a chronic cough as well, not nearly as bad as yours but it is there. It hurts my GN when I do cough, I can’t imagine what you are going through.
I just want you to know that you have people out there who are listening / reading.
Keep it up,
Smash
Everyone...
Omgosh, I can't tell you what all of your words of advice, concern and encourgement you have all given me mean.
I just had another botox injection into my vocal chords and surrounding areas. It always gets worse before it gets better with these injections - so I'm coughing more and of course now I don't have a voice. It's sort of hard to work like this. Thank goodness we have email now days.
Yes, Smash it hurts the GN when I cough too. I cough so hard I turn red and shake and vomit and everyone gets scared I'm going to pass out. When you cough that hard it HAS to bother it right?
Sometimes I wonder why...but then I just can't go there. It has the danger of being an emotional downward spiral and I have to try and stay away from that as much as possible. It's WAY to easy for me to go there. Just the kind words and support from people who know is enough to make me cry...just because someone knows.
Thank you EVERYONE for writing to me. It has meant so much! Sandee
You are always welcome!
If you ever need a pick-me-up, just PM me.
I'm sorry to hear this for I know that it is a very lonely place to be in. It is very difficult to go it alone. If I didn't have faith I don't know what I would do. Just yesterday, driving home from the family doctor, because I'm having a flare up and when it gets bad, I develop and infection in the base of the throat, one side. Anyway, feeling very down, exhausted and so very beside myself--I thought all of a sudden of a little girl, some thirty years ago. Her name was Jill, a beautiful little girl who had brain cancer. Her mother related how at the end, Jill was in great pain and said that she knew how Jesus must have felt when he was crowned with the thorns. This thought comes to me, oh, I have always remembered Jill but of late, I remember more and more for it is in her suffering and courage that I find strength. It's very hard, I just buried my husband in Jan--now he isn't here to help and I can't cry because that uses muscles connecting to the GPN so I work through it.With prayer and hope.
Work with you medications, don't be afraid to tweak things until you find what comforts you. I use ice bags a great deal, most every night two are behind and about my head to settle inflammation. But then also I'll have a moist heat pillow about the neck to ease muscle strain----ice and heat going at the same time...............it works for me and I take the medication. I use neurontin, twice a day; sometimes I squeeze in the third dose-it depends cause it does make me tired. I also use vicodin ES am and pm if needed. I have xnanx for bedtime. But because of my work and I travel two hours I am careful about the hours I take the meds. I was in a good pattern until the death of my Tony but now it is another adjusting phase. I will get to a better spot, it just will take time. The thing is, I have had the decompression surgery and I know it worked to the point that they corrected what was there for 51 years. There is bound to be some lasting "damage" from what was all those years. I can do this and that is how it must be.
@Anne, your story just really touched my heart....thank you for sharing with all of us such a personal part of your life, as well as the story of little Jill---what a testament to God her tiny life was....I am so sorry for your heart that is hurting without your husband Tony....I cannot imagine the fear and strength you are mustering while dealing with GPN on top of it all......I have strong faith as well in Jesus.....you will be in my family's prayers.....I hope this week is a good week and you are able to keep standing with a warriors strength.
There is a theme within all of the comments from the folks who respond. We all care about healing. This disease is down right awful. No one knows how awful unless they experience it.
I had GPN. Notice I say "had". There are those who will challenge my comments and tell you that I could not have been a sufferer of GPN becasue you can't just be cured from it. I'm sorry there are those who think that way. My reasons for telling my story will upset many. My purpose for doing so is that I can only hope that at least one person will listen.
I have no more trouble with GPN. I take NO meds and I have had NO surgery. How did it go away? Well, this is the part where people become offended and do not believe me. But once again... if only ONE person listens... how great that would be. So here it goes...
I have a wonderful friend. She is all about the way one can heal themselves. Here are the suggestions she gave me.
Prayer is a very huge part of this healing process. Attitude and a change of mind is also key. But how many of us truly practice this? The pain leads us to wonder when the next episode might occur. So, one suggestion to me was to control and eventually stop the pain by verbally telling the pain... "No, I do not accept you. You will not enter my body and you must go away."
Sounds ridiculous doesn't it? But by doing that you are re-training your thought processes. Believe in what you are saying. Say the words outloud. Have conviction in your words. You are managing what you accept and what you will not accept. You are learning to become healthy and healing takes place. Once again, I know these things sound silly. But it works.
Get out of the habit of thinking that this is something you have to live with. You do NOT have to live with this. Do NOT allow it. Listen to others with this disease. Read the comments in this forum. Unfortunately, there is a lot of negatism. A lot of people are using very powerful meds. These meds are only masking the problems. Yet, the same folks will tell you that they simply could not cope with out them. They are right. They can not because the mind set has yet to accept the idea that they do NOT have to live with this problem. They feel "trapped". They feel like this is the journey they must live with and there is a valid reason for having this ailment. They WISH they didn't have this problem. They truly do not want the pain. They just have not yet accepted the idea that they are the controlers of what is accepted.
These same folks are looking for the right doctors and a place where they can find medical treatment. They want to know what specialists or Doctors have knowledge and experience in the disease. Some find temporary relief. Others will tell you that it comes back. I believe it comes back becasue you haven't accepted that you are well.
My statements are not meant to offend anyone. They are very simple thoughts. Nothing magical. Yet we all strive to find the most complicated solutions. The solution is within each of us. Now, I know that many of you think I must be some kind of quack. I'm never going to change your mind.
You are meant to live a life. Not to let life control you. From the bottom of my heart I wish you and all others the best. What do you have to loose by trying my forends suggestions. Trust me... My attiude did not change over night. It took months to relaize that I am the controller of everything when it comes to my body, my thoughts, and my attitude. Not too long ago, I said the same thing in another forum. I was kicked out of that forum because the administrator became offended. If only that person would let others make up there own mind and form there own opinions. She thought she knew what was best for others. I wish her well and I hope someday she realizes that she just might have prevented at least one person to get help. Thats why I'm posting here. If only there is one person I can help by this post then it is all worth it.
Hang in there! Get inthe habit several times a day by saying out loud... "I am the controller of pain in my body. Pain is not allowed in my body and it must go away." Say it with conviction and believe it!
Change your attitude! It can only help!
Hi Sandee!
I also live in S.D. I have had a miserable battle not knowing what was wrong with me after I had a partial thyroid surgery. All of my medical doctors weren't sure what was wrong with me. My neurologist thought I may have GPN so I started researching GPN and that is when I found Dr. John Alksne. When I first saw Dr. Alksne, he told me I couldn't have GPN because it only on unilateral and it occurs from a spontaneous result and not from something triggered such surgical trauma. My story didn't fit anything he had ever seen before and it was a mystery to him. So he ordered MRI and CT scan. So on May 1, 2013 Dr Alksne told me I had Eagles Syndrome causing the bilateral GPN symptoms.
Dr. Alksne also told me he doesn't treat cases such as mine, but he has refereed me to ENT at UCSD.
I feel your pain, and can relate to how tired you are.. I also admire your strength for past 3 years. I have been suffering for 11 months and hoping to get more answers. Sorry for my late reply. My thoughts and prayers go out to you!
Sandeep, I was so sorry to read your initial post. Life is so hard and so damned unfair. I will have you in my thoughts. Thank you for sharing with us and keep posting.
Randy,
You are spot on! I really appreciate your attitude and I believe that there is mind over matter.
I have been trying to learn Mindfulness Meditation which deals with pain in the way you describe. I want to own this and get rid of it from my life! Still struggling when it takes over and I can't escape the pain but I won't give up and reading your statement gives me new faith and strength that I CAN and WILL take CONTROL of this BEAST! It will NOT rule ME! Thank you for posting your powerful statement!
Rita
Randy Vawter said:
There is a theme within all of the comments from the folks who respond. We all care about healing. This disease is down right awful. No one knows how awful unless they experience it.
I had GPN. Notice I say "had". There are those who will challenge my comments and tell you that I could not have been a sufferer of GPN becasue you can't just be cured from it. I'm sorry there are those who think that way. My reasons for telling my story will upset many. My purpose for doing so is that I can only hope that at least one person will listen.
I have no more trouble with GPN. I take NO meds and I have had NO surgery. How did it go away? Well, this is the part where people become offended and do not believe me. But once again... if only ONE person listens... how great that would be. So here it goes...
I have a wonderful friend. She is all about the way one can heal themselves. Here are the suggestions she gave me.
Prayer is a very huge part of this healing process. Attitude and a change of mind is also key. But how many of us truly practice this? The pain leads us to wonder when the next episode might occur. So, one suggestion to me was to control and eventually stop the pain by verbally telling the pain... "No, I do not accept you. You will not enter my body and you must go away."
Sounds ridiculous doesn't it? But by doing that you are re-training your thought processes. Believe in what you are saying. Say the words outloud. Have conviction in your words. You are managing what you accept and what you will not accept. You are learning to become healthy and healing takes place. Once again, I know these things sound silly. But it works.
Get out of the habit of thinking that this is something you have to live with. You do NOT have to live with this. Do NOT allow it. Listen to others with this disease. Read the comments in this forum. Unfortunately, there is a lot of negatism. A lot of people are using very powerful meds. These meds are only masking the problems. Yet, the same folks will tell you that they simply could not cope with out them. They are right. They can not because the mind set has yet to accept the idea that they do NOT have to live with this problem. They feel "trapped". They feel like this is the journey they must live with and there is a valid reason for having this ailment. They WISH they didn't have this problem. They truly do not want the pain. They just have not yet accepted the idea that they are the controlers of what is accepted.
These same folks are looking for the right doctors and a place where they can find medical treatment. They want to know what specialists or Doctors have knowledge and experience in the disease. Some find temporary relief. Others will tell you that it comes back. I believe it comes back becasue you haven't accepted that you are well.
My statements are not meant to offend anyone. They are very simple thoughts. Nothing magical. Yet we all strive to find the most complicated solutions. The solution is within each of us. Now, I know that many of you think I must be some kind of quack. I'm never going to change your mind.
You are meant to live a life. Not to let life control you. From the bottom of my heart I wish you and all others the best. What do you have to loose by trying my forends suggestions. Trust me... My attiude did not change over night. It took months to relaize that I am the controller of everything when it comes to my body, my thoughts, and my attitude. Not too long ago, I said the same thing in another forum. I was kicked out of that forum because the administrator became offended. If only that person would let others make up there own mind and form there own opinions. She thought she knew what was best for others. I wish her well and I hope someday she realizes that she just might have prevented at least one person to get help. Thats why I'm posting here. If only there is one person I can help by this post then it is all worth it.
Hang in there! Get inthe habit several times a day by saying out loud... "I am the controller of pain in my body. Pain is not allowed in my body and it must go away." Say it with conviction and believe it!
Change your attitude! It can only help!