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While wandering about the internet I happened upon a blog created by a woman named Barbara. She has written a lot of wonderful information about various auto immune diseases, in addition to several other chronic health conditions. I believe that she offers a great variety of opinions, research and knowledge on the subjects & encourage anyone whom may be battling something of that nature to click on her link posted below. 

http://barbarany_9.blogspot.com/2008/03/world-out-of-balance-autoimmune-disease.html

What were your side effects from the Lyrica? And from the Neurontin? Thank you for taking time to write and share your story with me! I am glad to hear that your pain has decreased so dramatically! That is wonderful! Blessings, Brenna

I don't know if you found one of my pages from my profile site or another page, but I have a few pages regarding pain, spine and joint conditions, medical issues, and so on. If you are interested in reading and sharing your stories.

God bless you and your supportive family.

Morning Sheila ~

Yes, living in the moment is important. I think it becomes more apparent and important to those who have lived and experienced trauma and extraordinary things/struggles. You know, the general awaking people tend to have following a traumatic, life altering experience of some kind. And, sometimes, when we get lucky enough to have more than a few of these (I am being somewhat sarcastic using the word lucky), we have to live in the moment, or at least, day to day. We refocus and reprioritize, sometimes without really knowing it, and just begin to live differently. I tend to appreciate and notice very small things, like as if my world got smaller, and in some ways, this was intentional. I used to be very sociable and energetic, mind you, the energy part is largely affected by my chronic illnesses, but, I tend to focus my life around my home and family and don't take it much further. I cannot stand to be touched/affected by more drama at this point in my life, and try my hardest to control this - well, to the degree any of us can really control things. In doing this, I began to see some of the greatest beauty in the smallest parts of my life, things that many don't even pause to notice and appreciate. 

I remember my first drive out into "the community" after being flat in a bed and body cast for over 4 months. I had never been so excited to see the outside world and simply take a 5 minute ride. I noticed everything, the color of the trees, the smallest changes to various houses and buildings, the list goes on. My mother was amazed at the tiny details most would have never seen. When your world becomes so small and limited, you find a whole new appreciation for everything. I do not need much to be entertained, unlike I did as a teenager and as a child, and frankly I become overwhelmed with many things.  I know that my anxiety plays a piece in this, and as you mentioned before, if I think to far ahead, even beyond tomorrow, I can't deal, so I must live in the now.

I am glad that you enjoy what I have to share with others. It gives me happiness that my difficult experiences can be helpful and appreciated by others in some aspects. Thank you for telling me.

Blessings, Brenna 

Reply to Catluv--I think we''re on the same page, I'm a firm believer in living in the now, what worked yeaterday may not work today or tomarrow because there really is no tomarrow, all we ever really have is now. I so appreciate how you are so open with your journey and even though your past has been nothing but pain and suffering just relish this moment, smell it, touch it and even notice the space your sitting in, this, right now is our reality it always has been and always will be, nothing ever happens other than right now. I have no idea why I just went off on that tangent but your writing brought out in me that I needed to come back to where I am right now and this moment I am ok and I don't hurt so all is good now. Thankyou so much for sharing your world. Sheila

Hi Sheila!

Thank you so very much for your last message, it really made my day (as today is one of those days, not horrible, but some weird physical things are occurring and are painful, compounded with a feeling of emotional/mental dread regarding my financial situation - I hate feeling so out of control, not knowing what will happen and what to do - I believe that my anxiety only plays into my health and quickly envelopes my entire body, rendering me fairly useless). - Ha, looking at all of the above, I certainly took an interesting route to explain! Oh, well. Thank you for your compliment and feedback about my writing. I have always enjoyed it, and I try to put my general flow of conscience thought, no matter how nutty, or personal, onto the page as quickly as possible...who knows when I might lose that great thought(s), so I just go, and hope that I am making sense to those who chose to read it. 

I love to hear that it is interesting to people, and in turn, I get a chance to let go of some sadness, grief, pain, anger, and so much more. This was also the general idea or premise behind my thought to write a book. When I came across this site, I thought my god, I can share my stories, my experiences, knowledge and wisdom with those whom may have similar struggles, ultimately creating a small place in my world where I can "take control," and both help others, while helping myself. I was also excited to utilize my love for art and design, and hope, that perhaps, the old saying is true..."do what you are passionate about, what makes you happy, and the money will follow." Still crossing my fingers on that one. But I have a good feeling (all be it a somewhat unsure, frightening feeling), and I still have a lot of faith in god's plan.

When you speak of your massage and chiropractic experience, I cringe for you. It is horrible when you can not stand to be touched. It is also a feeling where you begin to wonder and worry like - "will it always be this painful, and how will I ever find a way to relieve pain?" Although I am fairly new to the world of auto immune diseases, I do know that most of us who have one of the conditions, are much like those with cancer. We are caretakers, emotional, sensitive, and those individuals that absorb, and are tremendously affected by stress, trauma, and emotion. Our bodies have spent a lifetime building, storing, and caring toxins of all types. With regards to massage, I have found it pretty difficult to truly find a practitioner (whatever their "specialty"), that will be both compatible with the patient and experienced enough (and in experience, I do not just mean the amount of time practiced, I am referring to their level of intuition, a sixth sense if you will, and their ability to "know" your body by a means of energy). Many practitioners do not have these qualities, and are not even in touch with their own bodies and minds, which makes it pretty impossible to connect with what another person's body needs to heal. This is also true with counselors/therapists/psychologists. If the practitioner has not worked on their own self first, they cannot really help anyone else on any level of true growth. I would be interested to see how you might respond to very soft touch or no touch energy work before working your way to massage techniques like Soma. As I told the fellow who responded/commented to my post on Soma work, whether or not you "believe" in the effectiveness of the energy work (or any therapy, or treatment for that matter), even some of those who go into it strongly believing that it will not work and that it is non-sense or voodoo, come out astonished at what they may have felt or what it accomplished for their physical, emotional, spiritual, state. To be honest, I have always been a fairly open minded person, believing in a sixth sense, intuition, astrology, life after death, and lots of other "not so scientific" ideas, but I was skeptical of energy work, and although the stories told to me during my first training we amazing and very intriguing, I would not be convinced until I experienced both the affects of receiving and giving reiki energy. 

I am glad to hear that you receive some degree of relief from your exercises. I know first hand how easily it is to fall behind, stopping completely, usually due to the start of a cycle of increasing pain and other complications. No matter how much certain things may help, when you are too fatigued to complete your day, and in so much pain that changing your clothes is a struggle, forcing yourself, the body that is so out of your control, to do the given exercises, becomes a distant memory.  I must go right now, I am being summoned. I will write later.

Blessings, Brenna 

comment to catluv---I have been reading your latest post on your spondylolisthesis and the Soma Body Work that has seemed to help you so much. I must say your personal experience with this disease is so interesting to me. For one thing I have never heard of this spondylo thing and I can only imagine the pain that you have endurred and still are. I totally agree with you on the body memory thing. For many years I did yoga and lots of stretching and bending exercizes and slowly started letting it go. Just like everything else I get into I start out just gung ho and work and work at it until I master it and then I just slowly lose all interest and go onto something else. Let me get to the point here, my doctor has suggested and referred me to get massages as well as see a chiropractor twice a month. When I went in for my first message I thought it was going to be so enjoyable and relaxing but within the first minute the masseuse started pushing and rubbing my back I just screamed. The pain of just being lightly rubbed was so intense I started to cry and told them not to touch me again and I left, I called the chiropractor and told them what had happened and the first question they asked me was "do you have fibromyalgia" and when I told them I did they told me it would be best for me not to come in for any treatment at this time. I started doing some of my old exercize moves, stretching and bending and I was astounded at how well my over wieght and neglected body responded to the old familiar movements. It was as if my body was saying to me "OH! yeah I remember when we used to do this and I swear after a few movements me body just kind of did it's thing. It didn't last for long of course due to me being so unfit but it did remember what to do and it felt so good. I really find your whole story so interesting and you write very well so reading your posts are indeed a pleasure for me and also gives me so much info. You keep writting your story Catluv and make your posts as long as you want, I for one look forward to them. Sincerely Sheshe030  (Sheila)

Hi Paul,

Yes your mind is a very powerful thing, and there is no doubt that when we believe something enough, making it real and part of our life and being, that it becomes our truth, our reality. This can be seen along the lines of how they train navy seals, and the whole idea, "fake it tell you make it." Navy seals are taught to use there mind as a control of their body, and those whom are difficult to sway, they show all of their studies/statistics proving just how much the brain can influence every aspect of your being. Our mind obviously has memory both conscience and un-conscience, and so does our body, our physical cells, tissue, muscles, etc., our bodies retain memories of it's past traumas, events, and activities/positions. Easiest way to describe or relate this idea is when you think of pregnancy, labor and delivery. The first baby is not a known activity/event to the mother, nor her body, while the second, third, and later babies' deliveries are "remembered" in the mother's body and it "knows" how to act and what to expect for these later events due to the stored memories. This same thing goes for exercise and muscle memory. Going along the description of pregnancy again, when a female has exercised on a regular basis most or all of her life, during and after pregnancy, her body will "bounce back" more quickly than a woman who did not exercise consistently throughout her life. I am sure that you are aware of this, as you seem smart and interested in the studies of psychology, biology, etc. The idea of Soma Massage is based on the "bodies memories," and how this body facia & tissue work can help to redirect and reposition the bodies structures to the original positions that your body works most efficiently. Over time, each of us, or should I say each of our bodies, compensate to function, which is all dependent upon many variables, i.e., our age, our work - the amount of strain on our bodies, general stress, any physical/medical/mental/emotional conditions, and obviously, the general way we treat our bodies and how we live our lives, these are clearly not all of the factors that can play into a person's given situation, but you get the idea. Our bodies, and in turn, our minds, learn to function in ways that we were not meant to live, that is, existing and surviving in less than "healthy" and comfortable ways - i.e., more pain, more apt to chronic illness, etc. 

When I explain Soma body work, i use the word massage, and while it is related to massage, it is not the "regular" massage one would get, not even a deep tissue massage. In a basic description, I like to paint a picture of Soma some where between chiropractic and massage. Although, unlike chiropractic, Soma body work is not an abrupt, rough, nor forced adjustment of the spine or any joints. The concept is to allow the work to penetrate deep enough in order to reach the memories of the facia, and ultimately allow the body to adjust itself. Of course, no matter how much work is done, how little stress you have, how much you exercise correctly, eventually, your body will return to the positions that it remembers and has been holding the majority of your life. But, with consistent work, which can be spread out more and more over time, unlike chiropractic (which can be loosely compared to an addiction, as the adjustments often have to been done more frequently in order to reposition the bodies structure), Soma begins to train your body and reworks the structure so that your overall physical functioning "sits" and "behaves" in a correct and natural position, allowing for less pain, decrease neuropathy, appropriate conscience and unconscience muscle function and positioning, and the ability to release stored toxins that have accumulated in the body. 

While I agree with your thoughts on the power of the mind, I also believe the our bodies are equally as powerful, and can recall and be re-taught to behave in more effective ways. I also believe this true of energy work. And as you stated in the above, you may think I am nutty as well, although I have witnessed and experienced energy work truly and honestly affected both those whom believed and wanted to believe, and those whom thought the idea was ludacris, and in no way that anything of that nature could ever really work. But before I tell you of my stories, I would like to share with you how Soma body work has helped me, continues to help me, and ultimately changed my life. I understand that you have your own beliefs and may think that I am crazy, but I hope that you may be open to just reading and considering a combination, that perhaps both you and I are right. -That it is truly a combination that makes for an answer/explanation. 

I do not know if you read my profile, but for the sake of explanation, I am going to take a leap and assume that you have not read about my life and it's many medical adventures. I have a spine condition called Spondylolisthesis, which after full body traction, two 12-14 hour surgeries, a few other lovely procedures and many months of a full body cast, I gained 3 inches in height that I had lost due to the vertebra slip/collapse, and was fused at the L5 S1 at what they label as a grade 5. Prior to all of this, my condition was actually officially called Spondyloptsis, a complete slip of the vertebra, that as you read above had fallen 3 inches down, which compacted my abdomen region, compressing my internal organs. The bottom of my rib cage literally touched the top of my pelvis, and for extra dramatic visuals, my Sacrum protruded from my low back an inch and a half. The x-rays are incredible and unbelievable. Specialists from all around (the world) were amazed and rather excited to see and "experiment" on this rare case. I was 14 years old, and the condition and overall situation was serious and required immediate intervention, and my parents were not about to allow any specialist, know matter how "great," do any sort of experimental surgery on their child. They ended up doing a series of surgeries, procedures, and treatments, and with the option selected, it was the lesser of the evils, and only had a 30% chance of producing a paralyzed 15 year old. Of course I was suffering from tremendous pain and nerve complications, and still do to this day. In the fall of 1996 my surgeries were scheduled for early spring 1997, my mother had been searching for any help, relief, anything to make my existence in this state doable for those sixth months and happened upon a school and two therapists at the Soma Institute in Buckley Wa. Yes, somewhat new age, as I mentioned in the previous post that you responded to, it's beliefs were with the mind, body, spirit....emotional affects upon the body, movements and retraining of the bodies movements and memories, releasing a lifetime of built up toxins stored in the mind and body, and so on, you get the idea and probably want me to shut up right about now so I'll try to get right to the point and be as straight as possible.

As you can imagine, my body was in a bad state, the nerves were severely impinged, and as I described I was literally disfigured, walking abnormally, my body trying to compensate to function and survive...I was literally a lovely shade of gray/green, yes, it looked like I was dying, and I was. I began seeing my Soma practitioner -whom I remained with for just over 11 years- immediately following my diagnosis in October 96. I received hour and a half to two hours sessions once a week for those sixth months. The work did not relieve my pain, nothing could, in fact, due to the level of deformity and stress, is was very painful to receive the work, but I was tough and at that point nothing could be worse than what I lived everyday (Well with exception!, I didn't know then just how much it hurts to have your spine pulled apart with weights attached to ropes that are then attached to rods and screws which are drilled into your bones, especially when you refuse to push your pain button, and have large sections of your bones cut in half. ha, we know joke that had we known the details, it would have been difficult to go though with!) My orthopedics kept close eye on all of the measurements, the degree of slippage, x-raying my skinny gray body often, so when they took the last imagine the morning of my first surgery they were shocked to see movement of the vertebra....and not a greater slippage, but an actually good degree of movement of the L5 lifted back up closer to the S1. My mother had asked my doctor if this massage technique was okay to have done when I began the Soma sessions, and the doctor gave her the okay, stating that it wouldn't hurt, although he warned her that it would likely just be a waste of money and would only help relieve a small degree of pain, for at most, 1 hour. And, provided that the type of massage had been a "regular massage" technique, even the deep tissue variety, I would have been inclined to agree, but it wasn't. It has been 12 years since my surgeries and while I still deal with many physical issues as a result of my condition, I still receive Soma work, not as often, but I know for myself that without them, by body does not work in the same way, period. While many practitioners are hesitant to work on my strange body, the few who have, are quick to mention how well my body responds to work, "remembering," without much encouragement, even after long periods of absence. After 10 years of consistent work (about every 6 weeks on average), I went without any work for over 6 months, due to the loss of my practitioner, and during this time my body became increasingly more stressed, compensating in many ways to protect itself and function. To put it simply, I was extremely uncomfortable and found myself taking more pain meds. (which only added to my bodies stored toxins). 

Now, I must apologize for how long this message is, and hope that you have read part of my story and have perhaps considered the possibility that it's not all just mind over body. I share this because I believe in it's effectiveness, if you find the right and good practitioner (and i'll admit that it is difficult, just as it is hard to find a good doctor). If I had found and began this work two or three years prior, I may have very likely avoided some of the surgeries, procedures, and treatments that I endured, not to mention, decreasing my level of nerve deficit and my future prognosis. I still would have required a surgery to fuse the unstable vertebra, and with spinal fusions come it's own list of issues, but this option would have been clearly the preferred route. While my condition is not rare in a low grade, it is fairly unique in the higher grades, and certainly, the level slippage that I experienced. Many never know that they have it, and are not told that it may be their source of low back pain. My concern is those whom experience higher grades, which create a laundry list of problems, and are not well known, nor are there many places that provide detailed information regarding the condition, it's affects, possible treatments, both surgical and otherwise. I desperately wanted anyone to relate to, and I did not have that. It affects so many aspects of my life, and will continue to do so until I die. I have tried nearly every known pain relief treatment out there, and I know that this treatment, Soma Body Work, has worked for my condition, and could likely help others in the process (grades 1-5), avoid the severity that I could not avoid.

Now, I am going to stop here, as you are either throwing your computer out the window,... or, if I have peaked your interest at all, you still need a break! I would love to share my personal experiences, and shared stories regarding energy work, addressing the issue of mind over matter/body/experience...as you wrote about before, but will only dive into that if you are interested in it, that is, if you can deal with my rambling in another message! lol. 

Even if you think I'm a bit nutty, or if I have not accomplished my goal of opening your mind to a different train of thought/belief...I hope that you enjoyed my story, if not for entertainment value, for a lesson in strange spinal conditions!

Best to you and many blessings, Brenna P.S.

If you are interested in reading more about Soma, whether it be to understand more about it, find a practitioner, or read more in order to try to prove me wrong (hey, I like to debate, and believe that any person has valid ideas and thoughts...no one knows it all, nor is any one all "right.")...I would be happy to provide a few websites, including the "official" site for the Soma Institute and the owner of the Soma Techniques & Ideas.

Hi.... No I can't say I have. What I am getting at this time is a chinese deep tissue massages. My sister and brother help to pay for them. They do help. God Bless Grace

Grace,

Have you ever heard of Soma Massage Body Work?  

Hi.....Catluv's I know what you are saying I have been through this myself the steroids and all the other drugs. I also take the malaria drug, Plaquenil for the last twenty three years. Without that drug, I would have taken an overdose of my sleeping pills. I am in the same situation. I have no health insurance, so I have to pay for all my medications myself. I am taking fifteen different medications at this time. What I have done is I searched for the lowest prices and Sav-on and Costco Have given me a great prices. The Hydroxychloroquine 90 tabs is only 19.59. If I do not take the Plaquenil, I have a terrible burning under my skin that  would make me go crazy if this would continue, I would rather die! Today I am having a horrible day. You know the days, when your body is trobbing from pain and you have that pounding headache. The only parts of my body that does not hurt is my hair and nails. So I know what you are going through every single day. If that were not enough we have money problems and no where to turn. I am trying to get disabitity and it has not been easy. I hope you are on disability. If you are no receiveing disablility let me know and maybe I can help. There is a post on this page that could help you. I hope you are having a good day and always know you are not alone. CatLuv's you can email me anytime. I am also taking supplements. omega fish oil, Calcium, Potassium Gluconate, Magnesium,V-C. I take more then recommended and you have to take them every day or they will no help you. I purchase my supplement from puritans pride .com. their prices are the lowest and you buy two and your will receive five bottles for the same price and shipping is only 4.95 no matter how much you order. I hope this will be a little help for you. God bless Grace 

I have not had good experiences with drugs like Lyrica and Neurontin, and while it may affect each person differently, I experienced some very scary side effects and like yourself, have already put on 50 lbs. (as a result of a hormonal illness, not steroids, refuse to take steroids for my autoimmune diseases). I have told all my doctors many times that Lyrica, Neurontin and other meds. similar, are not desirable as I will only end up putting on more weight, which only increases my joint and back pains, kinda hypocritical in the end. Like all of us dealing with auto immune and other chronic illness, the last thing we need is more pain, and more side effects! 

I refuse steroids, as I said above, and take the malaria drug, Plaquenil for my symptoms, not to mention many, many, many, supplements, but my multiple diagnosis make it difficult to nail down which and what helps or only makes things worse.

I was excited to hear that Cymbalta helped someone with similar health situations -with pain. I had the script but my insurance will not cover, and it is $300 plus, and already pay $700 monthly in prescriptions, which is killing me! So I returned to Effexor.  Only found one place that helps prescriptions paps but looked on the bbb.org and they have ALOT of complaints and it is via mail, so fear is meds. won't come on time, and that's not okay when it comes to many scripts. The company was called Select Benefits, but very hesitant to pay the $65 per mo. for meds. (although sure would be helpful! - maybe I could buy groceries then!) but, fear that they won't come on time, or eventually, at all, with no recourse and continued auto withdraws. Has anyone used this program?

Blessings, Brenns 

This evening i listened to a lecture about a book titled "Never Be Sick Again". It is available at barns and noble and other book store as well as on line... Anyway, this is not a commercial....When certain food irritate certain conditions with in the body, removal of those foods make changes in the diagnosis....

I have a friend with a child/teen with adhd; when certain foods were removed from her diet, and others increased she had less difficulty consentrating. My husband and i both have authritis, and a few other "elder diagnosis" as well. We now try to keep as much white flour products out of our diet as possible, I drink soy milk, we have reduced our products with processed sugar, limited dairy, and i try to keep him encouraged away from coke and othe colas.... We are both feeling better over time...We do not purchase any foods or seeds which have been genetically engineered, knowingly.. we are hearing too many things from farmers and gardners of negative experiences to their plants, and the neighbors plants and soil as well...

So I am going to purchase the book and check out some of the throries in it.. Maybe some one else would want to as well.... Just a thought>>>> anyone can agree or disagree, and thats ok....  

Hi Friend I know what pain you are going through and there are no words to explain the pain. I have had Fibromalgia since 1986 and I am in pain 24/7 all day and night. I have tried Lyrica and for some reason I starting having more pain than before I started taking the medication. The side effect of Lyrica is gaining weight and I have already gained forty pounds from the steroids. I really do not want to incease my weight. I will ask my doctor if I can try Cynbalta. At this time I am taking thirteen differant medications. You are a sweet heart for helping every one with this dreadful disease. Thank you so much. God Bless Grace

Hi Friend.....

Fibromyalgia is not fun, I know, I have a severe case of it with my Lupus.  What I did find, is my doctor tried me on Cymbalta of all things.  I take 120 mil grams a day, and have been taking it now for 4 months.  I can't believe the difference it has made in my pain threshold.  On any given day, my pain was a 7 or higher.  Since taking the Cymbalta, my pain is at a 5 or lower.  I know, that may still seem high, but for me, I can function at a 5.  My doctor is still working on trying to get it lower.  In a couple of months, he is thinking of adding Lyrica with the Cymbalta.

If you are seeing a doctor on a regular basis, you might mention Cymbalta to him/her and see what they have to say.  All I know,  is it has made a huge difference in my disposition.

I hope this helps.

friendshelpingfriends

Thank you so much for the web sites on Fibromyalgia. I have had this disease since 1986 and I am in so much pain 24/7. I hope I find some help. Thank you again. God Bless Grace

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