Hello my fibro friends,
I haven't posted in a while. I've tried to be superwoman and deal with my fibro by myself and/or ignore that I have it. That got me into a deep hole that I'm just now pulling myself out of. I needed to renew my Prozac prescription and the dr wouldn't do it unless I had another appt. I was muttering to myself about having to go for an appt, but it was the best thing that was forced upon me.
My regular dr, who is really wonderful, is out until September so I had the "new" dr on staff... a young, personable, really informative woman. She came from another part of the US that had fibro centers and support groups. She said she wasn't well versed in fibro, but knew alot about it. Seemed to me she knows more about it than anyone else I'd seen. I explained that I had gone to a rheumy who gave me ultracet. She was upset that I was given that ... said it won't help fibro pain. In fact, I had only taken one and wouldn't take any more. She gave me a script for 800mg motrin for pain. She feels that we should try other things besides narcotics, etc for pain. I mentioned trouble with sleep and asked about the meds I see on tv ads for sleep. She is having me try taking Benadryl at night first. It will make me sleepy and may help with my sleep problem. She mentioned that the scripted sleep meds tend to give unrestful sleep and I may wake up feeling like I have a hangover. She also recommended massage - and finding a masseuse who is familiar with fibro. Exercise, of course, was discussed, as was weight gain (something I am totally disgusted with). I have an appt with her in a month and then after that I will have regular appts with her to track my meds, symptoms, etc.
I had convinced myself that I could deal with fibro on my own. No need for a dr or meds. I was getting depressed with the pain and feeling so awful all the time. It took the dr threatening not to renew my script for me to go back to the dr. I felt like fibro was taking over my life, and it very well is. I always thought of myself as a rational person, but where the fibro is concerned, I was being irrational. I can't do this by myself, I need the support of my wonderful, caring friends here on the board and the support of a dr who I can really talk to, who understands what I'm feeling (and I think I've finally found one!). My husband is unconditionally supportive, but he can only do so much. I need to help myself, too, and find help.
Thank you all so much for you posts on this board. I may not respond to alot of things, but I read everything and it all has an impact on me. I appreciate you all more than you know. I know I'm not alone in this fibro fight.
oh baby girlfriend,
lean on me for a minute and maybe give a listen too. fibromyalgia is not taking over your life. it is only asking for a share of your time and health. your beautiful body needs you to come home within and find your peace.
please consider asking your doctor to discuss ambien with you. i have had fms for over a decade. for the past 4 years i have taken 50mg of benadryl and 10mg of ambien. i decided increased tolerance is not an option. i did not believe the doctor who said i would never need to take more. he was a rheumy, and he was right. for whatever reason we fibrohumans do not build tolerances to some meds like the rest of the so called normals do. giggle. anyway, i do on occasion have a night where i do not sleep. they happen. there is no pill to make it all go away and i am not looking for one. i do not wake up groggy in the morning. i wake up smiling and singing most days. sometimes i say ouch first and then sing and smile.
i have never increased my dose of sleeping aides, and have in fact been able to decrease other meds, such as neurontin. sleep is imperative to living with fibromyalgia and not going mental about it. sleep is an issue for most of us. i do not take any form of antidepressant.
ask your doc to check it out. i am delighted you got the doctor who needs to learn from you. together you will find your way. you have body knowledge she needs and she has years of training you will need to draw upon. teamwork.
now, as for trying to do this alone. well, kiddo, i respect your right to go there. we all do now and then, especially in the beginning. i am glad you pulled your lovely head out of your, well, giggle, you know where! i think it is part of the process or journey to acceptance and incorporation. a good shrink helped me, actually two. mostly tho, i had to learn to help myself. the doctors can only assist you on your journey.
your body is a wonderful creation. don't love it any less because it is sick and does not look the way you want it to. my mom always told my sis and i to develop a personality because our looks would not last forever. we were eyecatching, my sis, my mom, and i. we still are. my mom and sis are round and soft. i sag and i am wrinkled and my upper arms are evolving into a flying squirrel. life and time happen. so does getting sick.
i am glad you came home to us and spoke up. having done it myself, i know how hard it is to talk, let alone think clearly when my head is perched up between my other cheeks. i was hard headed for a bit at the beginning. maybe it was a couple of years before i realized i had to make my own way. the illness is too new for any history of proven treatments to exist. hope springs eternal. in the meantime i learn how to do it the way i am.
welcome home my friend, welcome home!
ps you have my permission to print this and take it to your doctor. benadryl is a safe starting place. i hope it proves to be enough for you. less is always more.
I personally cannot offer any input on medications for fibro, as I take tons of pills and potions for lupus and other weird and wonderful things. I have never been prescribed anything for my fibro, but I know if I need any help and assurances then here is the best place to be.
I know the road is going to be tough for you whilst all of your treatments are decided, and I do so understand that your dear husband does all that he can to help. I would be lost without the suppoort of my compassionman (Blue's wonderful name for him). When the going gets tough we are all here for you, and to let you know you will never be alone in your fight.
I am so glad to have found this wonderful family. They have helped me through some really scarey times, have laughed with me and made me laugh and accepted me for who I am, and I would be totally lost without them. I have never felt so much love from so many people, and I feel so lucky to have found them.
I am not a medical doctor, I only speak from my own experience of the illnesses I discuss here.
Last edited by goldenwings; 08-04-2005 at 10:40 AM.
hello jen, i am so glad that you were able to go back to your doctor. i hope that you have been able to sleep better. how is the benedryl working for you?
i was told that tylenol PM also has the same effect so i usually take that at night with xanaflex and that really helps, for about 3hours at least.
that is so awesome you have support from your husband. a couple of weekends ago i went to san antonio to stand in a wedding and while i was there i went to see family because thats where i am from, anyway i had to explain to them what i had and they just weren't very supportive. they tried to tell me what i should do to help but i had to tell them that i have pretty much tried everything. sometimes its no use to waste my breath explaining fibro and how i feel.
thats why sometimes i am so glad that i live 1 1/2 hrs away from them here with my husband and kids. my mom also lives here with my 2brothers and they don't live far from me. at least they are here and understand what i am going through being that they see me on a regular basis.
anyway i hope you get to feeling better and try and keep us posted if you can.
Jen, I want to ditto what Blue says about the sleep meds. Well, actually everything Blue said. Sleep is so very important, without the sleep the pain increases. Your body needs sleep to heal and restore. I also take 10mgs of ambien and have for more than 2yrs. I also take a muscle relaxer with it 6mg. and have been taking 25mg of benadryl lately with it. You have a good start with the benadryl, but please don't be afraid to try sleep meds if you need to. Get samples from your doc to give them a try before you pay for a whole prescription. Sounds like you are on the right track with a doc that will work with you and that is the important thing right now. Let us help when you need a lift, we are always here for you.
My dear friends,
Thank you all for your kind words. I really needed it. I'm feeling better about myself and have a better outlook. TK, Blue, you two are an inspiration to us all. I appreciate everyone more than you know. I think I will bring up the sleep meds - specifically ambien - at my next appt. I won't know unless I try it whether it will work or not. Benadryl is okay, but I think to myself: why am I taking benadryl when I don't have a cold or sinus problems? Seems like I'm taking a med for a reason other than it was intended. Does that make sense?
Thank you again.... God bless, Jen
This is my first visit here. I have been diagosed with fibro and raynauds plus the docs think I have mctd. I read a couple of posts that some of you have curling fingers. I started two years ago with my right hand, the fingers curling in and can't straighten them, now my left fingers and my toes are curling in. I first noticed it when I went to put my coffee cup down and the cup did not leave my fingers. Back in 1992 the rehum said I had mctd and osteoarthritis and sjogrens syndrome, now 2 weeks ago I had a blood test HLA-B27 come back positive ( some kind of gene marker for spondylitis) but they say I do not have that. The new rehum said that I dont have any of the things that I was told I had in 1992. It is now the fibro and the raynauds because my dna or ana titer has not stayed elevated, it spiked up two times in 13 years. Has this happened to any one else?
Welcome Tryanna! You are joining the ranks of many of us who have to keep looking for docs who will take us seriously. My ANA has been up and down the scale, and I have heard many different things about that. Ana usually has more to do with your Mctd than fibro (I think!) Have you tried the lupus board, check there also there have been some good posts on ANA.
Someone else on this board I think talked about their curling fingers, maybe you can find that post. Don't give up, keep pushing your doc and keep looking for a doc who will take you seriously about your symptoms. Just because your ANA fluctuates does not mean you do not have an autoimmune problem or a connective tissue problem.
The people on this board are here for you keep us posted please.
Thank You Very Much!! For responding. I kept coming back to my computer to see if someone would talk to me. How long have you had fibro? And have you ever been put on NALTREXONE? I just started it about 1 1/2 weeks ago, it hasn't helped yet, only to constipate me and my skin and mouth are very dry. Hope to here from you soon!
Sorry Trynna I put an extra 'a' in your user name the first time. I have been diagnosed with fibro since 2003 but like many others am sure I had it long before then. I was one of the lucky ones, I was diagnosed immediately. My doc started me on amitryptaline but that didn't help much and it gives me a hangover. So one night I tried my hubbys Ambien that had been prescribed and he couldn't take because it gave him a hangover. Worked wonders for me! So really all I take to get some sleep to help me cope is Ambien 10mgs a muscle relaxer 6mgs and 25mgs of OTC benadryl. I also take something for my lupus symptoms and pain, right now it is prednisone. If my pain gets so bad I can't cope I will see my GP and get a pain management doc referral. I'm very fortunate that I was able to quit working when it got to be too much, that's how I cope and get by, that and the help of my great hubby.
ps. sometimes you have to be patient with us on the board, we all have our times we can get to the computer but we will always be here for you. This is a great group and a good forum.
Welcome to the board! A bit of advice: when you start a new thread, start it as a new thread, not a post on someone else's thread. That's probably why nobody responded to your questions - because you posted a question unrelated to my thread on my thread. Post a new thread and you'll get so many responses it will make your head spin!
Take care of yourself and hope to hear from you again...
God bless, Jen
Last edited by JenniferEvelynn; 08-04-2005 at 10:17 AM.