... unsucccesful surgeries??After 20 some odd years with the same Dr. , he decided to no longer care for me.Due to my inability to be able to keep scheduled appts.I tried on numerous occassions to explain how there are days when I wake knowing I need to be somewhere but cannot make myself get up and ready due to pain,confusion,depression,etc.No matter how hard I try I cannot make it on time anywhere.I do not do this to make a spectacle of myself ,nor to make an entrance I am not that vain.The shame everyone speaks of is like a constant elephant on my shoulders.I did in fact try on the occassional time he had asked if it was in fact a problem getting places how it was,on several occassions I have even gotten lost going places I have been hundreds of times before.I really cannot explain what happens all I do know is that I will suddenly realize that the route I am on is unfamiliar.How I have goten there is beyond me.I would like to find one Dr. That would care for everything rather than have to go to several specialists.Any Suggestions??
You're going to have to show up for your scheduled appointments regardless of the dr you are seeing. You realize that I'm sure. :)
Fibro is an autoimmune disease. The best specialist to see for autoimmune problems is a rheumatologist. They are accustomed to dealing with the "fibro fog" you are referring to. They are accustomed to dealing with the chronic fatigue caused by so many autoimmune problems. I have three autoimmune illnesses and my rheumatologist has been a life-saver for me.
The most common meds used for fibro are pain meds obviously. You may find some relief with lyrica or neurontin as fibro pain can be nerve-related and they are not narcotic medications. We are all a little different and especially with autoimmune diseases there is a little bit of trial and error involved finding what specifically helps you. There is NO one medication that is proven helpful to everyone as there is no cure for fibro. Hope that helps.
You should also look at the following books: Fibromyalgia & Chronic Myofacial Pain: A Survival Manual and also The Fibromyalgia Adovcate by Devin J. Starlanyl- these books are validating of your frustration and have much advice and information that may help you. (information on metabolism, diet, pain management, possible underlying medical factors, how to talk to your doctor/find an effective doctor, and so much more!!!
I purchased a Theracane (just type it in and you'll get some places to purchase it from- it's about $40) to help me reach and release trigger points- which has helped immensely. I discovered that I also have chronic myofacial pain- which can be helped and decreased if you release trigger points. I didn't know I had it until I read Devin's book! I also realized that I may have had unnecessary root canal since it was most likely a trigger point in my jaw since the dentist didn't see inflammation, but we did it anyway since we didn't know it could've been a trigger point!!
Devin's books are very validating and have helpful advice. The Advocate one has sample letters to hand to family, friends, and doctors. People need to understand that this illness (though invisible) is life-altering and REAL. I also have gotten lost in my own little neighborhood... it is frightening to not be able to find your way home when only 3 blocks away!!! Please know that you are not alone.
As for finding a specific doctor, often your primary care physician is your first line, be sure you find someone that believes you have fibromyalgia and understands the depth of this disorder. You will actually want a health care TEAM for this illness- at least initially- a chiropractor or other bodyworker is very helpful, you may need a neurologist, you may want a therapists or psychologist to help with depression/hope issues, and your gynocologist, eye doctor, and other doctors should also be informed (see the sample letters to them in the Advocate book) and sympathetic.
Do research. Arm yourself with education and knowledge and NEVER EVER give up. You will find what works eventually... you must. (I'm not there myself, but I've at least improved things a tiny bit and feeling like I've learned a few things helps my esteem and hope levels.) The biggest thing is to not only expect, but DEMAND to be heard and respected- this is a real disorder and deserves true consideration and effort to help you.
It took me several years to find the doctor who was able to diagnosis my fibromyalgia. She was patient, listened, and asked questions. She checked the "pressure points" and did some research on things she didn't know about it, all for me. She didn't mind, as alot of doctors would and DID, that I had done some online research about my symptoms. She actually seemed to appreciate that. We tried Lyrica, but due to an awfully fast weight gain and my retention of water from that drug, it was quickly discontinued, as we both agreed the risk/benefit ratio didn't justify its continued usage. Through some trial and error, we found a "cocktail" that has given me back my life, allowed me to be a mom to my kids, to walk my dog, to LIVE AGAIN! It consists of Tramadol, 50mg, taken three times per day, Skelaxin, 800mg, taken up to four times per day as needed, and finally Lunesta, 3mg at night, as needed for sleep.
Now its not perfect, as nothing short of a cure would be, but Lunesta allows me to gently fall asleep, and I do not wake up feeling like I took anything (Ambien was awful, I'd fall asleep quickly, but soon wake up within a few hrs, and I also ALWAYS felt like I had taken something, had a terrible morning fog from Ambien). I also have a small supply of Vicodin, for severe pain, but rarely do I have to take that. Its just on hand in case I have a very bad day, and the Tramadol isn't cutting it. I only keep 10 on hand at any given time. I like to know I can relieve any severe pain that may breakthrough, but honestly, the Tramadol does wonders for me, and I believe it to be sort of an antidepressant as well as pain reliever. Studies have shown it affects the reuptake of serotonin as well as norepinephrine, and I know for me personally, I no longer have those down days I was having. I feel better, happier, awake, and alive for the first time in so so so many years! All the best, hope you all find what works for you!! :-)
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