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samdenrob Posts: 11
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I am the mother of a 22 year old who was recently diagnosed with FM. My husband and I, not to mention my daughter, are very frustrated. Her doctor just wants to use narcotics to medicate...She does not have much of a life anymore...can anyone help with words of wisdom??? anything really please Post edited by: samdenrob, at: 05/03/2010 08:02 PM |
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MissStacey Posts: 14847
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Welcome to the group, it is very supportive here. I am sorry she is suffering, we can all relate here. Would she like to join so she can see she is not alone, it is very comforting and there are a ton of topics that get covered and she can ask questions and learn alot. You yourself can also learn alot here as well and there is also a group for family members too where you can peek into. I will provide you the link.  http://www.mdjunction.com/fibromyalgia-in-the-family I suffer from Rapid Progressive MS, Lupus, Fibromyalgia, Epilepsy, Migraines, Neuropathy, IBS, Narcolepsy, Arrythmia, Arthritis and too much more complete list on profile.
"Just because we have the right to disagree with a person, does NOT give us the right to disrespect that person."
I'm not currently active due to many personal and medical issues. I will not be participating in MDJ for awhile, my thoughts and prayers are with everyone. I hope everyone is well and I appreciate all of the thoughts, kind words and messages. I have tried to respond as much as possible and apologize if I have not gotten back to everyone. Love & Hugs, Stacey |
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MissStacey Posts: 14847
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I suffer from Rapid Progressive MS, Lupus, Fibromyalgia, Epilepsy, Migraines, Neuropathy, IBS, Narcolepsy, Arrythmia, Arthritis and too much more complete list on profile.
"Just because we have the right to disagree with a person, does NOT give us the right to disrespect that person."
I'm not currently active due to many personal and medical issues. I will not be participating in MDJ for awhile, my thoughts and prayers are with everyone. I hope everyone is well and I appreciate all of the thoughts, kind words and messages. I have tried to respond as much as possible and apologize if I have not gotten back to everyone. Love & Hugs, Stacey |
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samdenrob Posts: 11
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Thank so much for your response...I will mention joining to her. She might if she can stay awake (meds) long enough.. |
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Lynnette1212 Posts: 1167
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It also might be wise to find a new dr., one that understands fibro a bit better. There are medicines out there that are not narcotics that help with the pain. Unfortunately, it's trial and error until you find the right cocktail that works for her. It doesn't sound like this dr. is to into taking his time to help your daughter and is blowing her off. keep us posted. |
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tracy912 Posts: 7
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I hope you can get some answers. I will tell you that for me, moving around is important, "exercising" is helpful. We each have our own definition of that tho.  I went to a lupus self help group and they said to make sure we are only using the bed for sleep at night. it is too easy to stay it in all day and thus getting worse. Talk to her doctor about adding an antidepressant. I use Celexa as it was created for chronic pain. Good luck. |
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samdenrob Posts: 11
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She is also taking an anti depressant...Terazodone (sp) also some thing for anxiety...can't keep up with all the meds. She semms irritated all the time. Stays in bed alot. She does talk about exercising.. I guess she just can't make herself do it. She gets numbness in her hips and legs and swelling in her legs ankles and feet. I agree about getting a new doctor...she also talks about doing that.. Thanks for the support |
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aTinaL  Posts: 11832
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I'm so sorry to hear about your daughter. As frustrated as you are with her doctor, I think the fact that he's willing to prescribe narcotics is actually a plus. So many of us find that anything less really won't address the pain. With that said, the best suggestion that I can offer, and you might have a chance at because the doctor does prescribe narcotics, is to try suboxone. It is working for a small group of us- those of us who have been able to get it from doctors to begin with. You only have to take a very small dose of it. I've been on it for a year and I've been pain free since the first dose. I'm slowly but surely getting my life back. You have to understand that having fibro really destroys the body and it has to build itself back up. If you're interested in more info about it, we have a group just for fibro and suboxone. You're more than welcome to join us there, too http://www.mdjunction.com/fibromyalgia-suboxone Newbie hugs! Tina
"Calm down! Let's cook some carrots!"
- Jim, Hell's Kitchen
"All aboard the suboxone train!"
- Tina
I'm not a doctor, but I play one on tv!
-Tina |
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RedGirl Posts: 1594
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My young daughter had a negative reaction to a medication she was given for fibromyalgia. That was amitriptyline. She became manic and horrible and hateful while she was on that. I realized pretty quickly what was going on and she and I went to her doc to have her medicine changed. If you daughter has become more irritable since she started taking meds, it could be a side effect of one of those and it may need to be changed. I hope she soon finds something that works for her! Red I am not a doctor or a lawyer. Any comments, posts, or responses I might make are made solely from my life experiences and are not intended in any way to be medical or legal advice so please do not take it as such.
"Nothing but heaven itself is better than a friend who is really a friend."
Plautus
"The language of friendship is not words but meanings."
Henry David Thoreau
"Life is hard. After all, it kills you."
Katharine Hepburn |
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raynedae Posts: 8219
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I took Trazodone for sleep when I was first dx'd but it didn't do anything for me. I would suggest that you ask for Cymbalta for your daughter. It seems to do the most good with the least amount of side effects for MOST of us....fibromytes are weird so what works for most of us will cause horrible reactions in another. The tiredness is part of fibro, but with her feeling irritable too, I'm just guessing that she's depressed. Cymbalta works well for depression and I've gone into remission from the pain of fibro while taking nothing but Cymbalta for pain. I'm surprised her doc is giving her painkillers. I can't get them from any of the 3 doctors who have treated me for fibro. But now I'm on Cymbalta and Neurontin and it takes care of most but not all of my pain. Try to get her interested in walking with you, but start very slow and don't go far. We tend to be exercise-intolerant. When I was first dx'd I started walking with a colleague who treated ever walk like a race...I got shin splints that hurt for months. Start with a 5 minute stroll to mail a letter and work up from there. Yoga is also a good exercise for us, as long as we have someone who knows what they're doing to teach us. The combination of gentle stretching, mindful breathing & meditation can work wonders, again if we don't start out too fast. If they haven't already done it, they should check and see if she's Vitamin D deficient. A lot of North Americans are, even when we drink milk, take supplements and spend a bit of time in the sun. Magnesium can help with the muscle pain. I take a supplement that contains calcium, magnesium & vitamin D, plus another 2000 ius of D3. Epsom salts are mostly magnesium and she adds some to her bathwater her skin will absorb some of it and it really does help with muscle aches. Good luck. I'm really sorry to hear this has struck your daughter at such a young age, but there is life after diagnosis. gentle hugs, rayn
I am not a medical professional so please exercise common sense when it comes to my advice.
I am also NOT a lawyer so exercise common sense when it comes to my advice.
I was a bookseller so you can trust my advice regarding books :)
www.operationbeautiful.com |
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