I am so confused...upset...and baffled?
- Posted:
- 21 Dec 2011 by Jillynnie
- Topics:
- suboxone, fibromyalgia, amitriptyline, hypothyroidism, savella, blood disorders
Details:
All of my blood work came back normal. The only area of concern is I am at the beginning stages of hypothyroidism and he has put me on a low dose of Levothyroxin.
I can't explain my feelings right now. I do not understand how I can be feeling the pain I have been in and there not be anything to register.
I can only surmise that I am going through Fibro flare ups and have been experiencing medications giving me terrible side effects.
I have dropped my subs dose down to 2mg and will continue to get this out of my system. I have almost gotten the Amitriptyline out. I will hold off on getting off of the Savella until after I see the Neurologist on 1/5. I think the only way to find out if this is disease or med reaction is to get off of all meds and start anew. I am also increasing my vitamin intake and adjusting my diet.
Thanks for everyone's support. I truly appreciate it.
Jillynnie
21 Dec 2011
Hi there Jillynnie. Never a dull moment. Well, try and get the worries out of your mind. Although the pain wouldn't allow it I'm certain. You've the festitvites coming up, on going, hopefully, that will be a distraction, and give you a break, away the woes of the day. Once again, have a blessed holiday, and always think the good, and it usually more often than not, shows itself up. See you later gator,pledge
21 Dec 2011
I am so sorry honey and I know how you feel. You know whats going on or wrong and when it does not show up it is soooo frustrating. Keeping you in my thoughts and prayers. *hugs*
Anonymous
21 Dec 2011
Hi Jillybean,
I know how upset you are. Yet as you well know, fibro DOES NOT show up on blood work. Nor do certain other things that we discussed privavtely.
I had a doc appointment yesterday. I told my doc that I cannot believe the amt of pain I am in, and I don't believe this is all fibro and RA. He actually agreed with me.
Yet I saw a neuro doc in the summer, and he said that all I had was "One nasty case of Fibromyalgia with RA" Well, I took that as good news! No MS, no Lupus, (that is still under investigation, and PCP doc suspects that).
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I wonder about the joint pain you've been having of late. One can be tested for RA and the blood work can be NEGATIVE, yet the patient can be riddled with RA. I know how hard tis to be a guinea pig! And how hard it is to get a diagnoses when some docs tell you "It's all in your head"... have you ever heard that? I had ONE doc since my diagnoses tell me he didn't believe fibro existed, but he was a psychiatrist, and as my Da says, they are nuttier than their patients!!! No offense to any shrinks reading this! (sorry, girl, this is not about me)
Keep your chin up Jillynnie, sometimes no news is good news! Smile purdy and comb yer hair (as Irish Gran used to say) !!! Just trying you to look at the glass half full my friend, and certainly not trying diminish the pain and the frustration you feel. IF you feel like you've not been heard, or certain tests were not performed that should have been, be a pitbull about it! Dig into this until you get the right doc that will listen to you and take your situation seriously!
Love,
Lara
21 Dec 2011
There are many pain conditions that dont show in bloodwork! That is why pain diagnoses can be so elusive! There is no "painometer" although I wish we had one! lol It sure would be easier to let the Drs know how bad you feel and how much pain we endure! Dont get discouraged. You will find a medication combo or a reason for your pain one day. Also keep in mind that our bodies can sometimes act very strangely to certain foods and it may be a kind of allergy. It may be beneficial to keep a food diary for a bit just to see if there is any correlation to any foods you eat. Perhaps it is a weird kind of allergy. There are just SO many possiblities and variables. Keep your chin up and dont get yourself discouraged! Keep fighting and trying! Chin up! Dzoo
22 Dec 2011
Jill, you should be jumping for joy, girl! It took me probably 25 or more years of doctors telling me "no, you don't have osteoporosis you are too young", "no, there is nothing wrong with you, all the pain is in your head"& on & on & on. I was never so happy to get a diagnosis of fibromyalgia in my life! At least I had something, & I knew all along it wasn't in my head. Well, except when my head hurt too! lol What I am trying to tell you is fibro patients are so ultra sensitive to all pain, you feel like a pin cushion. Even a light touch makes my skin hurt.Granted I have other major pain issues, but I still believe the fibro is the worst of all of them. I agree with Dzoo too about foods. I have several food allergies, & I can tell you exactly when someone has slipped something in there I shouldn't be eating. You can get tested or do a food elimination diet.
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Stress also depletes the dopamine levels in the brain, causing the fight or flight response to be depleted disturbing the sleep. 90% of fibromyalgia patients are women who are caregivers. Hmmm. Sound famililar?Be happy you don't have MS or Lupus or anything else. That doesn't mean you don't hurt just as much as the rest of us, you just haven't found the right combination of meds. I did with Lyrica, but now it's reared it ugly head at me so in January we start all over again! Hang in there, & don't get so discouraged. We are all here for you. Maybe in the near future they will find out what really causes fibro & what if anything can cure it. In the meantime, don't get down about that being the "only" thing wrong with you, revell in it girl! Love ya, Mary
22 Dec 2011
Hey Jilly sweetie - I so understand your frustration. I don't have any experience with Fibro or RA but had similar experiences when I was having all my gastointestinal problems. I went to 5 doctors and 3 emergency rooms over a period of about 6 months and they just kept saying there was nothing wrong and sending me home. The problem was very obviously real as I would be so distended that I looked 10 months pregnant. But they couldn't find any problem so they would admit me put in the NG tube for 3-7 days (depending on how long it took me to decompress) and then send me home. By the time I got someone to help me I was almost dead. But I didn't give up and FINALLY I got someone to listen. When they did the surgery my colon was dead and they had to remove it. Jeez you think that means there really was something wrong with me??? I even had one "doctor" tell me I was faking it. How do you fake that and who would want to. The NG tube is a modern torture device.
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I would cry all the way to the hospital knowing what they were going to do. So don't get discouraged. You know your body better than anyone. When I got fed up I figured out that I had to be my own advocate. Well guess what I did the research, made them listen and the problem was found and fixed.
I know our stories are different but my point is they couldn't find anything wrong with me either. Stay strong sweetie. My thoughts and prayers are with you. Just try to relax and enjoy the holidays. I know easy for me to say. I will be here if there is anything I can do or if you just need to talk. Merry Christmas.
Lots of love and big hugs -Terri-
24 Dec 2011
I want to thank each and every one of you for your very helpful feedback. You all truly did help me! The encouragement I received here, and the understanding and support, really made me feel so much better. I mean that!
It was so comforting to read your words and to remind myself that yes, I DO need to see this as good news. It also helped to read that you all understood my initial reaction. I felt bad that I did not immediately see the positive in this report, and for you all to understand my frustration truly did help me.
Thank you so much, dear family (new and old) for your love. You've no idea how very important you are to me.
I love you... sincerely do.
Jillynnie
24 Dec 2011
I'm confused too. I posted an answer almost immediately-it showed as posted but it dissappeared-how can we live without mystery. Anyway, I do associate hypothyroid with muscular and joint pain. When my thyroid is off-one way or the other-I do experience more pain. My doctors are seldom surprised when I complain about it. If I suffer too much pain from the flu, a fall, etc. They dutifully run a thyroid screen. It has been a good indicator that my thyroid is off. A low thyroid also causes depression and anger too. It'll take a few months to get on track. But some thyroid compound work better for some people than others. I can't handle synthetic thyroid suppliments-and even though my lab work is good, i feel poorly with porcine thyroid extract. Then over a year later it sort of exploded. By that time, the production line for my regular thyroid was cleaned out, etc. and making my favorite thyroid pills. So if you continue having trouble ask if you can switch brands-
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Jillynnie
pledge
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Jillynnie
Anonymous 21 Dec 2011
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Sorry that you don't care for my comment. But you forgot to give me your name or a reason why?
I'm with pledge, explain please?
To whomever voted down on this, perhaps this was a mistake and you accidentally picked the thumbs down. I did that once and immediately let them know. It happens. If this was intentional, personally I found it to be MOST helpful so please do not speak for me and suggest otherwise, as the answer was intended for me. Thank you.