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Kendassa Posts: 99
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So I went to see the rhumatologist today. My regular doctor is honestly at wits end with me because really he just doesn't know what to do as far as treating the pain goes. I came of the Savella because the rhumatologist here doesn't really believe in the fibro diagnosis but stayed off it because my pulse rate is almost under control again, even though the heart problem has nothing to do with the Savella we can't get it normal at all while I was on it. I also decided I wanted to come off the fentanyl pain patches I was on. I was just feeling so zombiefied all the time. So my regular doctor put me on Opana ER 5mg twice a day, when I was still on the Savella. This worked decently, kept my pain level tolerable never spiked up past a 6-7 on my bad days, so I can function through a day. Without the Savella I am back to having 9-10 bad days, even with increasing the Opana to 10 mg twice a day and I take Lorcet for break through pain. The only reason I take these versus something else, is because I can taking no NSAIDS at all. Aleve, Ibuprofen, Advil, Asprin, and medications that I know help, I cannot take because of my kidney transplant. Which brings me to my visit today. I have put off seeing her after the first visit I had with her. Now I know why I never followed up with her. Although I give her props for being able to diagnose the EDS, when noone else could... She tells me that pain never killed anyone. I need to be off my pain medicine completely. Yes I know narcotics can be a problem. But I have been on Lorcet for almost 20 years now. My 30 day supply usually lasts me almost 2 months. I rarely take the 3 a day I am prescribed. Some days I don't even take them. But seriously, because I can't take the medications normal people can take, I should just deal with the pain? Because pain isn't going to kill me. As a matter of fact, I should get a part time job, and work, it would make me feel better. Exactly what does she expect me to do? It takes me 30 minutes to fold a small load of laundry. But that isn't all. In addition to the whole, the pain isn't gonna kill me, I can just deal with it... I should be grateful I have my kidney and it works.. and I can feel pain.. people like her brother can't even walk.. they would trade places with me in a heartbeat. So add ungrateful to my characterics.. the list is getting long. I am a mother, a patient and a nurse. My statements on here are based on experience and are opinion only. You should always check with your doctor before taking any advice online!
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mem1318
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Oh I am so sorry. We go to them for help and they want to talk crazy to us plus take our money so this is what I have to say to good old DR:  |
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hatbox121 Posts: 10659
Group Leader
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Find a new dr. Don't give her anymore money. I also say good for her for recognizing the EDS. Most don't. However that doesn't enslave you to her. Find another dr that's knowledgable about EDS(and I know that's hard but doable) and consider going to a pain mgmt dr. I'm also sorry for her brother, but just because one person is starving somewhere in the world doesn't mean I should. I wish you'd asked her "How did she feel taking your money, cause some people in this world don't have food/water/shelter?". I guess you'd have to add another charateristic to your list though. I don't like drs like that. All I can say is karma is a B#@&*! Amy~ “When you come to the end of your rope, tie a knot and hang on.” ~Franklin D. Roosevelt
Current dxes-Ehlers Danlos Syndrome, Mitral Valve Prolapse w/regurg, 2 other heart valves with regurg, POTS, DDD, scoliosis, various OA, polyneuropathy of unknown origin, SI joint dysfunction/fusion/collapse, chronic rotar cuff tendonitis, impingement syndrome of the shoulder, chronic bursitis in various locations, degeneration of the sternum, vertigo, GERD, FM, CFS, CPS, various bone marrow lesions, brain lesions of unknown cause, migraines, TMJ, vertically bulging discs, Raynaud's, anemia, tinnitus, high copper levels, borderline glaucoma, colon polyps, intermittent RLS, Vit D deficiency, depression, Eye accomodation disorder, Essential tremor, recurrent kidney stones, sacral spine disorder, inflammed tendons, and inflammation of spinal nerves(no specific dx).
I'm am not a dr. I am not a substitute for a dr. All advice I give is based on research and my personal experiences. |
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Kendassa Posts: 99
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Here in my city she is the only option. She also travels to all the surrounding areas, unless I want to drive to like Cheyenne which is a couple hours. I may end up doing so, but will be going to GA for 3 months anyway, since I have to go to my transplant doctors and someone they recommend for a surgery consult to have my hystrectomy done. Apparently there aren't many post kidney transplant patients who have them done.. Don't get me wrong. I am grateful for my transplant, I have gotten to see my daughter grow up, but some days, I hurt so bad I can't help but wonder if it is worth it. Someone who can sit there and tell me, pain won't kill you... just makes me want to get up and slap the snot out of her. I am a mother, a patient and a nurse. My statements on here are based on experience and are opinion only. You should always check with your doctor before taking any advice online! |
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hatbox121 Posts: 10659
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That's not funny, but that last part about slapping the snot out of her made me laugh!!!! Sounds like home. I will say that if you can, consider getting an appt with Dr. Brad Tinkle or Dr. Clair Francomano. If you are going to be driving hours anyway. If not, and you plan on staying there for a while after you get back from GA it might be worth it to try. Cause it sounds like she's not doing anything anyway. Another problem that she's not thinking about is that EDSers metabolize pain medications(generally) at a much higher rate than other people. So they don't last as long or aren't as effective. Another thing is that statement about her not believing in FM. Obviously she hasn't kept up with the latest research going on. The CDC, ACR, NIH, etc all say that Yes Fibro is real and it should be treated as such. If she hasn't read/gotten any of the articles on FM research and such(and there's been tons), what do you think she knows about EDS(which has very little)? Or the interactions with the transplant? Just saying. I'm gonna PM you cause that last paragraph I wrote got me thinking. Post edited by: hatbox121, at: 01/27/2012 07:43 PM Amy~ “When you come to the end of your rope, tie a knot and hang on.” ~Franklin D. Roosevelt
Current dxes-Ehlers Danlos Syndrome, Mitral Valve Prolapse w/regurg, 2 other heart valves with regurg, POTS, DDD, scoliosis, various OA, polyneuropathy of unknown origin, SI joint dysfunction/fusion/collapse, chronic rotar cuff tendonitis, impingement syndrome of the shoulder, chronic bursitis in various locations, degeneration of the sternum, vertigo, GERD, FM, CFS, CPS, various bone marrow lesions, brain lesions of unknown cause, migraines, TMJ, vertically bulging discs, Raynaud's, anemia, tinnitus, high copper levels, borderline glaucoma, colon polyps, intermittent RLS, Vit D deficiency, depression, Eye accomodation disorder, Essential tremor, recurrent kidney stones, sacral spine disorder, inflammed tendons, and inflammation of spinal nerves(no specific dx).
I'm am not a dr. I am not a substitute for a dr. All advice I give is based on research and my personal experiences. |
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ushie Posts: 1928
Senior Member
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Kendassa, she's a jerk. Pain can ruin your quality of life. Pain can make you crazy. Pain can interfere with everything that you want and need to do. Plus, she hasn't been keeping up with the research, so she's inefficient and ignorant. Oh, and I have a friend at work who's wheelchair-enabled due to MS. However, she's not in PAIN. She and I figure we're about equal in the Sometimes Life Sucks category, and neither of us feels ungrateful or whatever... |
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faieriemama Posts: 3345
VIP Member
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I'm going to restrain my self and rein in my Queen B****H self and simply say that I agree with and repeat RWs Friendship Prayer. May it come true everyday of her life. Sending you Big Hugs and Loads of Love dear. may come back once I've calmed down and can say something positive... like maybe tomorrow.   I'm not a medical professional, I can only offer advice,if you need medical attention please see a medical professional.
Don’t compare your path with anybody else’s.
Your path is unique to you.
— Baba Ram Das |
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Bananers Posts: 301
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Is there a neuro that can treat your fibro? I know it sounds strange, but maybe have a neuro for the fibro and the ***hat rheumie for the EDS? I'm sorry that you have to deal with this! It's as if we don't have to go through enough already...some docs need to pile it on as well.  Current Dx: Chronic Thyroiditis (Hashimoto's)/Hypothyroid; Fibromyalgia; Bipolar II; Depression.
Meds: Synthroid 137 mcg
Cytomel 5 mcg
Gabapentin 600mg 3xday (1800 mg total)
Lithium 1500 mg
Depakote 1000 mg
Wellbutrin 450 mg
Flexeril 10 mg 2/day as needed
Vitamin D 2000iu |
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Kendassa Posts: 99
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i am tempted to just drive the few hours to Cheyenne or somewhere, will see when i am back in Wyoming. Right now I have to worry about getting my surgery done, so my cervical cancer won't come back. And... I am in GA back close to my kidney transplant doctors in case I have complcations. Seems they had a recent transplant patient who ran into problems when her kidney was bumped during a hysterectomy. At any rate, is a nice little break from the snow. Although the humidity in GA makes me hurt alot worse than i did in Wyoming. I am a mother, a patient and a nurse. My statements on here are based on experience and are opinion only. You should always check with your doctor before taking any advice online! |
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Beached Posts: 114
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A brand new study using rats shows that Fibro pain can make a whole lot of other symptoms worse.  Just ask the rats. As for not "believing" in Fibro, this isn't a question of belief systems. It's in the text books and there's a check list of symptoms and tender/trigger points which let the patient "qualify". A older nurse friend of mine told me that in the 30s-40s, the medical community believed that MS patients could walk if they really wanted to, if they just tried harder. Just because there isn't one definitive marker test does not mean the disease/syndrome does not exist. Dancing on the edge is the only way to be. |
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"What MD Junction means to me is a place where i can feel like im not alone. As someone with something as rare as hydrocephalus, it feels like im the only one in the world with it. When i came to MD, its like everyone has it. It doesnt feel like im alone. And that people need to hold up a sign to say what i have, because people know. And they understand. I can get questions answered from people who have been through it rather than from doctors or people who only can tell you from a physical standpoint. THat is what MD junction means to me." (tomboykimi)
