That sounds like it must have been awful. I have been there. I have never been told to come back in pain though. I have a real problem with pain clinics. They are really discouraging. I have been to afew and they are not interested in the diagnosis at all. They won''t investigate things that are new or not understood. I went for 5 years to a pian clinic and they followed my meds, gave me injections etc....I finally went private and rtequested some tests and found out underneath all the pain and trying to mask it with drugs, I had an autoimmune disease, sarcoidosis and a chiari malformation (my cerebellum part of my brain at the back of my head is outside my skull by 7mm into my spinal column.) The pain clinic just treated me like a depressed middle aged housewife and told me if I went to couples cousnselling my pain should get better. I could tell you horro stories but I am more concerned with getting you the right help. What is your next step? Can you get another opinion from a place that takes an interest in your diagnosis and not just judge you on your mental stability. I would. I hope things get better. I am still in pain and still fighting to be heard. No one is planning any treatment for anything yet so I am running out of the energy I need to stick up for myself. stay strong. LisaView Thread
Hi Susan, Thanks for your reply. I am about the same 5 hard days and 2 not so bad. There seems to be more hard or bad than good lately. Wow I am sore. I saw the specialist about scarcoid....She sent me for a bunch of tests and they will all be done by the end of April (except the eye exam). TOmorrow I get a whole body bone Scan at Abbotsford hospital. I am thinking they will have to see something! It is so hard for me to believe that no one can "see" pain.....isn't there a scan or something that can show the world how much pain you are in. There should be. I am sick and tired of explaining it. I can't anymore. We will see what she says when I see her again in May sometime. More Waiting...... About the Chiari - I think for sure some of my chronic pain is related to it but I can't get a doc here to consider it. There has been such a decline in my neurological functioning it is crazy. I have vision problems, floaters, bright light flashes, hearing issues, etc..... I actually gave the new doc a list of all my symptoms and she photocopied it. This isn't her area of specialty but she is looking for neurosarcoidosis or sarcoid of the bone. Thank God. I have ckecked out the Chiari website but a support group might be just what I need. Thanks so much. Why are you not a part of the group anymore? Are your symptoms under control? What hurts you the most now? Can I ask you a personal question? It looks like you are with someone in your picture. How does he handle it?> I am wondering because we are having problems and I think it comes from my health. is it an issue with your relationship? and if not, How did you make it through when it was bad.View Thread
unfortunately I live in constant pain too. I am being looked at for sarcoidosis now that I have had the biopsy on my lymph nodes in my sterum and it is positive. They are going to look for sarcoidosis of the bones which might make sense of this chronic pain. It is getting worse and now I have a lot more neurological symptoms in my head and I still think it is from the chiari. Youa re right I ahould at least join a support group. All their stories sound so similar to mine. Years of docs telling them they had migraines, tinnitus, carpel tunnel syndrome, nuerogenic bladder.....depression, anxiety and I am so sick of hearig that. Thanks for your kind words. I am going to try and see if I can hook up to one. Any suggestions?'How are you doing. holding up ok? I have been thinking about you.View Thread
Thanks so much for your reply. You do get it then if you have had the same experiences as me. I feel so lost and confused about chiari. Now I have other complications with Sarcoidosis (auto immune disease kinda like lupus) and fibro. I watched a video about the Chiari Institute and how they investigated on a patient until they found the root cause of the problem and fixed it. It wasn't even chiari that was the main thing but they didn't give up and worked on her and tested her up and down until they were sure about things. I would love someone like that to take an interest in me and have some accountability that they don't just pass me off to another specialist. Hey, I wrote a reply back to Beckkygramma, please read as I was rwriting it to you too I just don't know how to get it to more than one person. I thank you for your validation and you are right I should join a support group. I don't think narcotics are the way to go with me and managing the pain. Doesn't anyone doctor care why it is happening and getting worse? What if it was MS pain or Lups pain? Would they be a bit more compassionate than just throwing me pills and treating me like a middleaged, depressed housewife with two young kids and a failing marriage who can't cope with life. It is so degrading. I try to get better stay active, keep connections, eat right etc...I just get scared to think that life should be more than coping everyday instead of living every day. I will let you know what happens with the chiari support group soon. Thanks again.View Thread
Hi Becky Thanks for your reply - it feels good when someone can relate to you on things like this. I am sorry to hear about your abdomen I bet that complicates things because weight is just hard on the body in so many ways. The drugs are always a catch 22 for me. I take them but I still suffer daily. I hate the stigma attached and I hate the way they make me feel. I too am unsturdy and spaced out and my memory problems drive my husband crazy. The whole thing is embaracing and I am very ashamed that I let it get this far. I take 60mg of oxycontin 4 times a day and 10mg oxycodone 3 or 4 times a day. I am also on cymbalta and zoplicone to help sleep. I have been up night with pain last night and that is what drives me crazy.......i take all this and the pain is not taken care of. I guess it makes me function and I can't imagine what it would be like without it but why do I still feel so bad?
Alas, there are yet still more complication with meds. I recently had a biopsy of my lymph nodes in my sterum and found that I have sarcoidosis. It is an auto-immune disease that has my body in a constant state of inflmation. It gives you swollen lymph nodes all around your tissues and organs that eventually granulate into hard pebbles. It explains a lot but so do lots of other diagnosises but the docs just keep giving me pills and never fix the problem. My MRI of my lungs show nodules in my lungs that looked like a "snow sotrm or blizzard" but the nodules were too small to biopsy. This was before Xmas and I still haven't seen a doc. I see her on April 15 thank goodness. The complication is that I have COPD and the narcotics are not good for lung function. I have a hard time coughing. I don't know what she will say or what she will give me instead but I am scared. I know prednezone will need to happen.
Anyway, I could go on and on. Thanks for listening. the replies I got were very reassuring and surprizing as I am so used to my relationships giving me no dialogue about any of this and then you guys / girls just know just what to say. Thanks....sorry it took so long to reply I have been in Disney land and palm springs for spring break.View Thread
Hi I have had pain for 25 years since a fall off a horse and degenerative disc disease. I too have Chiari 1 malformation (7mm) and Bastrups Disease (or kissing spine disease). Recently just had a biopsy and found out I have sarcoidosis. I have other congenital abnormalities and have had 14 anesthetics for related operations to my urogenital, spinal systems and 2 bunion surgeries last year. I suffer everyday and I can't imagine how hard my life has been on my parents. Please don't make your daughter doubt herself about pain management. My parents have judged me throughout and can't see why I can't cope on my own. I feel awful and guilty but I know it is because they are worried and that they love me. Everything for me is getting worse pain in my foot, back head and I am not coping well. I hide it from them but we are going down to see them in palm springs for spring break and going to disneyland with my kids. I guess I won't be able to hide it and the anxiety is making everything worse. My neurologists say the chiari isn't one of the causes of my chronic pain. I can't see that as being true. The youtube videos of people suffering with chiari tell exactly how I feel but they are getting validation I am getting told I have to live with it. I am so frustrated and saddened I can't work more than one day a week and I am barely able to run my household anymore. My marriage is a mess and that doesn't help anything. I keep thinking things will get better or that I have to quit being such a baby but I can't get away from myself.... I am however very blessed in many other ways, it always could be worse and thank goodness we can share and unload some of the burdens we carry being in pain 24/7. Is your daughter a candidate for the chiari surgery?View Thread
Thanks for the support. You are right pain is pain - no matter where it is. I have had years of it in all different systems. The congenital abnormalities involving my bladder tissue in the wrong spot has caused me years of sorrow. Now that I am married 10 years and suffering through this time of chronic pain I thought it would be easier having a husband, a friend, but he can't deal with any of it. Intimacy is gone now for 3 years and we are just living together trying not to kill each other most of the time. WE adopted two boys from birth but the oldest seems to have a behavior problem that wedges us apart even more. He almost agreed to go to counseling so I am hoping we can get through this. I think cause I am over 40 and chasing after two boys (7&4) I feel older than I am. It hurts me to know I am not the active fun mom I always thought I would be. I am however finished with my bunion surgery which means I can start walking and working-out again. I have gained 15 pounds since Nov 2011. I know I feel better when I can be healthier. I think the meds they have me on make me sore all over - do other people feel narcotics make them achy and tight all over with muscles spasms?.View Thread
I am so sorry for your pain. Yes I have been told many times the same words....there is nothing wrong with you......and it sucks. Soon after they usually try to put me on an antidepressant. I found out at 21 that I had congenital abnormalities in 5 body systems but all only on the left side. I can explain it more if it interests you just ask. It took the right doc taking biopsies of my vagina tissue to find out it was bladder on the the left side. also....... Your situation sounds complicated but keep searching for the doctor who wants to solve the mystery. Keep on it. Have you had an MRI of you Neck / Brain? I just asked because when I did then found something called a Chiari Malformation and to me it explained a lot. It means my cerebral tonsils hang outside of my skill 6mm and go into my spinal canal The docs don't agree on if it is having an effect on me or not. I know it is and that peace of mind is golden. I am still looking for a doc to look into it more closely but I have so many other things going on right now.....Good Luck with your search. I hope my input doesn't scare you....sorryView Thread
yes, no fun. my fistula will not heal itself and they are scared about trying to sew it as I don't scar well. If I get a blockage from the scar tissue then they have to put in a plastic urethra and then everything changes again. It is just one of the things I am dealing with that just makes things more complicated. I do not know what they will do now. I see the surgeon next month to discuss it. I am sorry for your ordeal...it is comforting knowing thank you for sharing. Good Luck.View Thread
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