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Please read fellow sufferers
11 Replies
heidicat13 - October 10

Hello everyone,My name is Heidi. I have suffered with Fibro for almost 9 years now. It is very hard for me to read all of your posts,because I just break down & cry. I am going to ask the Editor of this site to give us an IM chat box,so we can communicate with each other faster. And I am also going to ask,that we can start up a friends feature here. If you think this is a good idea too,please write to the editor also. I think that we all have a common denominator with this Fibromyalgia. We just need to find it! I was leaving school one day and slipped on a wet ceramic tiled corridor. My feet flew up as high as my head and I fell full force on my left side. I was a bit embarrassed & pissed off,but didn\'t really think much of it. As I was driving the 45 minutes from school to work. I fely my left hip swelling. I do not bruise easily! But by the time I got to work I had a black & purple bruise the size of a baseball cut in half protruding on my hip. As days went by. I started having extreme pain all over my body. I could barely sit leaning to one side, as sitting straight was out of the question. And standing straight up,wasn\'t happening! I had a constant horrible headache and my God! The shooting pains as if I were being electrocuted! Up and down my back,legs. hell even my arms. I tried Pain Management (which after time I could not stand straight up after the tens unit therapies) It seemed ot was hurting more than helping. I tried Accupuncture,Massage,Muscular Skeletal Therapist,Exercise, etc..I even tried looking at myself in the mirror and screaming at the top of my lungs! There Is nothing Wrong With You! After years of horrible pain, God knows how much money for Doctors,pain meds, gallons of Bio-Freeze, Tiger Balm any & every other kind of pain relief ointments & patches. The Back To Life gadget they sell on t.v.. An inversion Table, biking,hinking! I can\'t even load or unload my dishwasher with out pain. I have had numerous MRI\'s they show some problems,but all the doctors I have seen have said,It\'s not that bad! Then of corse I would ask well then why am I having all of this horrible pain? Why am I bedridden sometimes,or need a walker for a few days? Why does my lower back hurt 24/7? And why does it feel like my back is going to completely lock up? The answer was always the same! Either it was I don\'t know. Or it was silence and well if there\'s nothing else? and out the room the doctor goes! What really has baffled me all of these years. Before I was actually diagnosed last October with FM, was why was the pain bouncing all over and being the same yet different at times. I know you all know what I mean. I am also so sick & tired of people like who abuse meds just to feel different or to sell them! It makes it so hard for people like us,who are really in pain! I used to get really offended when doctors would want me to take a drug test. But after seeing the documentry on people who travel from here in WV & other places to Florida to fly by night clinics. I understood the doctors more. At first I was like great! I am from Louisiana, got wiped out by Hurricane Katrina. Didn\'t know what the hell was causing my body to attack me (technically we still don\'t know that!) I picked a great place to move to! And I had all of my medical records with me,I took them with me when I evacuated. But it was so hard to find a doctor, even with my records to prescibe the meds that at one time worked really well for me. One pain management doctor up here suggested RSD as the problem, so I looked it up. I don\'t have the answers,that\'s for sure, but a medical induced coma for 5 days? bit extreme, but I am willing to try anything! But that is in Germany! Who the hell has the money to do that? It amazes me. We are supposed to be the greatest Country on earth? I Don\'t know who started that rumor! Doctors don\'t listen to their patients anymore and most just seem to go through unemotional motions. I understand it is hard for people to understand the pain we endure, when they haven\'t experienced it for themselves,but my God there is no reason why anyone should have to live in pain! Not in this GREAT Country! lmao! With all the technology! As I could write a list of aches & pains as long as the bible, as I know all of you could too. I will stop here and pray we all find help soon. Please feel free to e-mail me at OOPS! wouldn't allow me to post my e-mail sorry! if you would like to just vent or have any new news for some relief from this horrible Fibro! I am trying to figure out what we all have in common. Please no scammers! It took me long enough to sit & write this little by little.Thank you all so much for your time, Heidi


kvc33 - October 11

Hi Heidi, I know someone who has RSD and as I was reading your story I thought to myself, "sounds like RSD". It can be triggered by a minor injury or even a insect bite. It involves swelling and the skin often changes color and gets blotchy. You are right, there is no cure or affective treatment for it and the induced coma carries the risk of death and often doesn't work. My local newspaper just did a series on chronic pain and there are all kinds of pain conditions that we don't have adequate treatment for. It stated the 20% of citizens are living with a chronic pain disorder. I think that some people who think they have fibro actually have RSD. Some of the people here are using skype to communicate with each other. You mentioned trying to find something that we all have in common, I don't think that is your answer. What helps one person makes another worse. You are not alone by any stretch of the imagination and reading the chronic pain series was an eye-opener even for me and I have had CFS and mild fibro for most of my life. I would suggest that you do some more research on RSD and talk to others who have it to see if you fit the profile. Both conditions seem to be treated with the same kinds of pain killers except they use ketamine to treat RSD. It is an older anethestic traditionally used in veterinary medicine. I'm sorry I don't have an answer for you, your best bet may be going back to the doctor that suggested RSD. Have you had a chiropractor look at your spinal x-ray? They interpret them differently than doctors. I would not suggest adjustments for you though as it may just trigger more pain. Google FaithforFern and you will read about a woman's long-term struggle with RSD.


kvc33 - October 12

Hi again, I was thinking about you and what you had written and I realized that I overlooked something in my response. We do have something in common, I believe, and that is TRAUMA. Trauma can be physical, environmental or emotional. Some people get fibro after a car accident or fall. Others come down with CFS after working in a stressful environment or losing two or three family members within a short period of time. Some of us grew up in abusive or neglectful homes. What we think is a minor thing is sometimes interpreted by the body and brain as catastrophic and so the brain starts to overreact to everything creating allergies, chronic pain, exhaustion and so on. The symptoms are real, the brain has been damaged. There are a couple of mind-body programs to retrain the brain and turn off the stress response. Check out the Gupta program and the Dynamic Neural Retraining Program. You will find parts of the program on utube. It is one theory that may help you.


heidicat13 - October 12

Hi kvc33,
Thank you so much for reading my post & responding. I actually did check into RSD when the doc. told me about it,but it I seem to have more of the FM symptoms than RSD. I agree,what works or doesn't for each of us varies. I am just so desperate as we all are to get out of pain! Again thank you so very much and if you ever need a chat or a laugh, please don't hesitate to contact me. Heidi


Cher0208 - October 17


You are a wealth of information. I am going to look into the Gupta program. I had an abusive and neglectful childhood and definitely think it is to blame.


kvc33 - October 17

I know it is for me. I don't blame anyone as such. My parents did the best they knew how and my community was blind to my pain. Unfortunately my environment was a very stressful, rejecting place for me. I think of what the kids have to go through now with the bullying and it makes me sick. They are committing suicide and why shouldn't they when their peers torment them. I heard of one tragic story just recently. An 11 year old boy killed himself. His mother died a few years beforehand and then he developed muscular dystrophy or something like that. A kid decided to pick on him because of the way he walked and decided to assault him. He was supposed to go to court over it the next day and he just couldn't face his tormentor so he ended his life. Too much loss and stress and it broke him. It becomes a vicious bloody cycle. We get sick, we lose our job, our friends, maybe our spouse. We become more stressed over our losses and we get sicker. We become even sicker because of the stress of being sick! Of course that isn't all there is to it but it's very hard to climb back up. I took a medication to solve a problem and it made things much worse and I am still living with the consequences. I am now so allergic to everything that I can't even take homeopathic remedies anymore. My world is still a scary lonely place because I don't fit in. I'm not working, don't have kids and I can't go out and volunteer or socialize. For the most part nobody gives a damn. I have a fantastic cat and boyfriend and they are everything to me. Except for a couple of others and the people on this board, everybody just ignores me and thinks that's fine. It isn't! I know I'm not at all alone. Many people have far less than I do, but it just drives me nuts that there are six and a half BILLION people on the planet and only a handful will give someone like me the time of day. Growing up didn't make anything any better because I now have the stresses of adulthood such as finances, car repairs, living in substandard housing, etc. At least when I was a kid I didn't have to deal with any of that. I apologize for being so negative but that is my reality. All I can do is try to love myself through it all and know that I am a hero and a survivor like the rest of you. We give awards and diplomas to the wrong people in my opinion. We are the ones who deserve them.


rnsarah32 - October 17

Hey Everyone,

I haven't been on this site in a long time because I was doing well for awhile. Now it seems I have re-gressed once again and I need a little hope haha. I have been through the endless doctors and treatments for years as well. This time I was seeing a Nuerologist for trigger point injections which was actually helping (whether it be physically or just emotionally for the time being)...anyway I just found out after multiple sessions that my insurance wouldn't cover it all and now I'm left with a huge bill that I can't pay...I cried for hours last night about how unfair it all is. How am I going to pay for all this? Why me? Im only trying to help myself feel better and I continue to get screwed. Even if I find a way to pay, it seems as though I can't get the injections anymore and I am feeling hopeless. I myself have been diagnosed with both FMS and MPS but these diagnoses only offer a name that made me feel better for a little while. They are still "syndromes" that cannot be cured with a pill or a diet change. I watch that show on TV "Mystery Diagnoses" ...All of those people have gone from Dr. to Dr. and finally they find out WHAT IS REALLY makes me hope and pray that somehow eventually a Dr. WILL find some rare disease that can be cured and I WONT have to suffer like this anymore. When I come on here it makes me feel better to know that I am not alone....but we do not deserve to suffer like this. I will pray tonight for myself and all of you. God bless everyone.


January - October 17

For any victims of abuse, I suggest reading Alice Miller's book "The Body Never Lies." Unlike many therapists, she does NOT advocate automatic (and premature) forgiveness of all who caused pain. This woman "gets it!"

IMO, it is part of the healing process to put the blame where it belongs - which is onto the perpetrators and OFF the victims. If we would stop meekly forgiving (I believe this is a warped interpretation of religious values), we might get better. I have seen good, clean anger work wonders to heal people. Real forgiveness is the end of a long grief process.

I agree with kvc - I think some disease and pain has roots in psychic pain which is unconsciously held in the body. Abuse victims are usually sensitive, vulnerable people who shun conflict - that's exactly WHY bullies sniff them out. The way to stop bullies and abusers from hurting even more people is to expose them to everyone (they really are cowards) - and to hold them accountable for the damage they do. Psychological damage is not "less than" murder, whether it comes to physical death (as kvc points out) or not - and society doesn't usually just look the other way when someone commits a murder. What about soul murder? Why do we excuse this kind of abuse? They don't know any better? I disagree… on this basis: If someone abuses everyone equally, they don't know any better - they're sick. If they carefully pick their victims, then yes, they do know better; they know who will take it and who will fight back.


kvc33 - October 18

rnsarah32, I did some quick research on trigger points and found that there are some books on how to treat them yourself using massage and pressure. It says that it should be done daily and that injections usually only provide temporary relief. Apparently since I have Restless Leg Syndrome it means I have trigger points so I am going to look into that for myself. I hope this gives you some hope. Google around and check out your local library.


kvc33 - October 18

I also agree January that forgiveness is the last stage of recovery from abuse. I have heard a family member say that she has forgiven it when it is clear that she is still living as though it were still going on. When it is truly in the past and we are living differently, then we can say that we have forgiven. Some people choose to accept what happened rather than forgive it because that feels more authentic to them. I don't believe that people have to forgive to move forward, it is their choice, however they need to be able to release their anger and other feelings to live a new life.


rnsarah32 - October 18

Thanks KVC...unfortunatley I own those books, and the instruments to do them myself. I spent about six months taking care of them daily and it did not make much of a difference. I also spent a lot of money on a massage therapist specializing in myofascial release. For some reason, pressure on my trigger points doesn't help. Infact, sometimes it can aggravate them further. The only thing that has helped recently (like 180 degrees) was the injections. The act of puncturing the trigger points relaxes them for some odd reason. Plus the MD does a nerve block which helps as well. I'm going to try to call them tomorrow and see if I can negotiate some sort of payment plan. It would be amazing if they could drop the price for me so my insurance would cover all of it (it may be a long shot but perhaps they'd rather make some money rather then none?) Today was a better day for me so I'm looking to the positive vs the negative from last night! :)

I'd also like to add that I had a traumatic childhood and I truly do believe it plays a role in this illness. I read that prolonged stress can cause some people to bear down on every muscle without even knowing it. This can cause severe constant muscle injury. Trauma also rewires the brain and messes with our neurotransmitters. I've tried all the antidepressants with no success on this illness. Perhaps they will find a new neurotransmitter to make a pill for (like substance P or GABA). I know some muscle relaxants act on GABA but they make you so tired that you can not function!! Anyway, everyone have a good night and I hope you all have a painfree, happy week! Wish me luck with the trigger point injections. [3


heidicat13 - October 18

Hi evryone,
I wanted you all to know I joined in on Terry C Springers web-cast last Saturday along with my husband.Please check it out,terry has a post on this site for Beta Testers. After all of the treatments,meds,gadgets and ointments I have tried with little or no relief. And numerous doctors who don't seem to care. I was very impressed with Terry's website he is creating.Please check it out.I know it will take some time to take off,but for some of us who do have,or may find deacent doctors or therapists (In any relm) If we can get enough medical people who actually care to get involved I really think we can have some hope! Terry's wife suffers as we do, so he is very in touch & sensitive to our many aches,pains & feelings.It will only take about 45 minutes of your time. I mean really what do we have to lose? I would love to hear your feedback. Always hoping this finds you on a good day,Heidi



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