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| axxie - Sep 20th, 2009 9:22 PM | |
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Hello thecudd, and welcome to the most comprehensive site. | |
| thecudd - Sep 20th, 2009 11:18 PM | |
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Thank you for your comments. I will make an appointment to see a Rheumotologist this week. | |
| katrinalove_1 - Sep 25th, 2009 3:08 PM | |
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Hi theCudd, It sure sounds like you have fibro. from your symptoms. My daughter and I both have fibromyalgia and she has most of the same symptoms you have. It sounds like RLS. We both have it. I take requip for my RLS. It works very well. I had to increase to 3 mg a night and so far I am better. It kept me awake all night at times. I have had fibro. for 20 years and just got diagnosed a couple of weeks ago. I went to a rheumatologist/neurologist. My dr. gave me injections in the hip and knee. I have to be careful with meds. because I have CKD. Hope this helps you. | |
| brooksidefarm - Sep 25th, 2009 5:00 PM | |
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Hi thecudd! I was able to help my doctor when I was diagnosed by going to WebMD. I know, I know some people hate that, but it can help. Go through the symptom checker. When you do, click on each body part and detailed questions will come up depending on each answer. It took me over an hour, but was worth it. | |
| FibroGal - Sep 25th, 2009 11:35 PM | |
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Hi, thecudd. Your description sounds like one I nearly could have written. It sounds like you could very well have fibro. I have all the symptoms you wrote about. After I take a walk, I get a slew of twitches in my lower back, hips and thighs. I get numbness, prickling,and pins and needles feelings. I can just so relate to what you described. Take heart. Fibro doesn't feel good but it's not progressive in the sense that it's not doing any physical damage. For me, it helps to remember that. | |
| thecudd - Sep 27th, 2009 11:51 AM | |
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Thank you all for your comments. It is so refreshing to know that there are others out there who are experiencing what I am experiencing, and that I am not imagining these things. I did see a Rheumotologist this week, and I came out of her office feeling very unsettled. She does not think I have fibromyalgia because I am not demonstrating excruciation pain in all of the tender points. Rather, she thinks I have polymyalgia rheumatica. Interestingly enought though, she did blood work on me, and the results came back negative - no signs of inflammation or sedamentation problems, which are hallmarks of polymyalgia . Nevertheless, she is still recommending that I take a trial of steroids to rule out this diagnosis, which I am hesitant about doing. I truly believe that her diagnosis is wrong, but I don't know how to go about discussing this with her. I know in my heart that I have firomyalgia. She also had no explanation for all of the other symptoms like muscle twitching, nausea, dizziness, fogginess, TMJ, etc., and all she said was that I probably have a couple of different things going on at the same time. And more importantly, she told me that muscle twitching is not a symptom of fibromyalgia, which is very puzzling to me because I have read about many fibro patients suffering from muscle twitches. Amy I nuts? What do you suggest I do? Should I try Cymbalta and see what happens? My Neurologist said he would give me a Rx for Cymbalta if I agreed. I don't love the idea, but I need relief and I don't think steroids are the answer. Your thoughts? And thank you all again. You are terrific, and I wish that you all feel better soon. Best Regards, | |
| Fantod - Sep 27th, 2009 4:59 PM | |
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Get another opinion now. Take copies of your recent test results with you. It sounds like the rheumotologist you saw is adverse to treating Fibromyalgia (FMS). We could speculate endlessly as to her thought process. The bottom line is she is not doing you any favors. There are still plenty of doctor's out there that think FMS is a figment of our collective imaginations. You can call your local hospital physician referral service and ask them for a recommendation to rheumotologist and/or a pain specialist with an interest in FMS. You can also go to the National Fibromyalgia Association website and register. Then you will be able to see a list of fibro-friendly doctors in your area. | |
| axxie - Sep 27th, 2009 8:00 PM | |
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Hello again thecudd, have you had blood tests from the rheumy, has she done a sed blood test or whether any of red blood cells and platelets (thrombocytes) in your blood. Platelets are colorless blood cells that help stop blood loss when you're injured. Most people with polymyalgia rheumatica have an unusually high number of these cells (thrombocytosis). On the other hand, many people with polymyalgia rheumatica have a lower number of red blood cells than normal and are often anemic. Also many women of age of 70 over get has your rheumy done your medical history and current symptoms and conduct a thorough physical exam. polymyalgia rheumatica are similar to those of a number of other conditions, including rheumatoid arthritis and polymyositis — a disease that causes muscle inflammation and weakness. | |
| FibroGal - Sep 27th, 2009 8:21 PM | |
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thecudd, | |
| pfiinch - Sep 29th, 2009 12:41 PM | |
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I finally got both my Dr.s to put in my charts fibro do to patients history.They both agree that I have all the symptons so this will help for the day of fighting ssi and ssd.You sure seem to fit the bill.I take cymbalta and change my dosage according to the way I feel.I also take pain eds which don't always seem to touch it.I also take lyrica which helps the most and ialso use it on how I feel once I am up moving around.I agree with other posters about the steroid shots.I have had them and no good for me had bad reactions to them.For a good night sleep I am on xanax 1 hour before bed.At least I get a good 5-8 hours of slep.Very important.Just don't let it eat up your pocket and your life.Stay happy and laugh.On a good day do what you really like for the pain may come back later and it is well worth the doing things we enjoy.Good Luck and kep us informed.There is some light at the end of the tunnel.Just do your best ot enjoy life at your pace.God Bless Patti F | |
| thecudd - Sep 29th, 2009 11:04 PM | |
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Let me say how wonderful you all are. I am so happy that I found this blog. Thank you so much for your kind words and support. It means a lot to me. | |
| toots2889 - Sep 30th, 2009 10:00 AM | |
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thecudd, it definitly sounds like you got a rheumy who doesnt agree with fibro. I truly believe from what you descibed that you have it. Do not get the steroid injections. Its a waste. I would get on the cymbalta as soon as you can. Ive had fibro for most of my life according to my fibro dr, but diagnosed 3yrs ago. I take cymbalta and love it. Make an appt. with fibro-friendly doc and im sure youll get the answer your looking for. You need to be getting treatment for it or it will continue to get worse. I hope I was of some help and wish you the best of luck. Let us know how your doing, as we will be thinking and praying for you. | |
| axxie - Sep 30th, 2009 10:54 PM | |
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I can't get over a doctor who would treat a patient for something she does not show and blood tests are negative. Wow, I would report her, that is somewhat scary... has she at least told you, her reasoning behind her treatment or why she thinks you have sed. It just doesn't make sense to treat someone with large doses of steroids, my doctor has always advocated that you just don't give steroids of any kind, unless you have a clear cut diagnose that would warrant it. The side affects that you want to live without, unless you had a diagnose that will be help on sterioid, such as someone who has asthma if you don't give it to them, then the concequence would be the patient would die. Clearly that is not you. | |
| Fantod - Sep 30th, 2009 11:02 PM | |
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Bravo for standing up for yourself and not agreeing with the doctor about steroids! Seeing someone else is imperative. When you get a diagnosis of Fibromyalgia (FMS) or something other than polymyalgia I would write a letter of complaint to your healthcare provider and the hospital system that she is affiliated with. You could save a lot of other people the same sort of despicable treatment. Let us know how you are doing. Take care. | |
| FibroGal - Oct 1st, 2009 12:00 AM | |
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I, too, hope you will report the doctor to the ACR and AMA (see contact info below). | |
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