So I feel like I have been pushed around. I started all this a year ago. I went to my pcp and said that I was achy and it was localized to my legs but it still hurt all over. She ordered a blood test and said to up my Vit D intake. Which I did. Turns out I was severely deficient measuring only an 13. So I continured to take my vit d and she ordered a repeat test for 3 months later. Well life got in the way and I forgot about the repeat test. Almost 8 months later when I went for an unrelated blood work they asked me if i wanted to do that as well. So I did it showed me still deficient. So I was told that the reason I was still in pain was that I was still deficient. So I upped my D again. So now fast forward to April im taking 5600 units daily of Vit D and still in agony. I was refered to a rheumatologist for suspicion of lupus. (When my daughter passed away from CHB they said it could be because I had Lupus and didnt know it so this was kind of a follow up) Rheumy said that no I did not have lupus but i did have fibro. Told me to exercise and go to my pcp to be put on an anti-depressant.
I chose to go to my therapist since I was already on an anti-depressant. In the mean time I am still in agony.
I just got out of a pcp appt. (that she deferred to a NP) And the treatment plan is as follows:
Use velcro weights attached to your ankles and wrists and "push through the pain. The only thing stopping you is your own motivation" Also to see my therapist more often than once a month because "Deoression isnt always sad thoughts. It often manifests solely as pain instead. So you need to get a better handle on your depression" She also said that she could prescribe a nerve calming drug called (sp?) Amitriptaline but " I want you to go home and google the side effects first to decide if its really for you" But the med causes sedation and that im supposed to take it at bedtime. I dont need help falling asleep. (lol i already have a med for that)
Idk i just feel like im getting the run around still and that im being told that its all in my head.
Im new to the fibro world. Does this sound right to anyone or should I seek a different doctor?
I also just looked up the side effects like she told me to do and I think this might have been a scare tactic. And if so well played NP... well played.
Finding the right med, the right dose, can be an on-going process, sadly there is seldom a one time success. If you like and trust your Doctor give them a chance, but ask about what other vitamins you should be taking to balance out such high doses of D3. If you go to a Chiropractor, they are usually masters with vitamins!
Do you take other vitamins to balance calcium and phosphorous with the D3? See link below,
Thanks!! I just got off the phone with Faith, my therapist. We are trialing Cymbalta!! Im also going to call my current pcp and ask her to refer me to a fibro specialist. And im going to bring her the paperwork for FMLA. Faith said that they have to fill it out because Fibro is a real disease. I also found out that the NP wrote up a very different note than what she said to me in the office. Im very glad I wrote down word for word what she said as soon as i got into my car because I would not have remembered by the time i got home. Faith seemed pretty irked by what the NP said to me. So I feel pretty good knowing that at least one doc is on my side.
I've taken amitriptyline before, It didn't help me personally but I didn't have any bad side effects from it or withdrawal. To be honest it was basically like i wasn't even taken anything at all. I'm currently going through a similar thing with vitamin D myself, from what i've found it can make one achey, but having taken a prescription vitamin supplement and an otc one, I have yet to feel any different. I'm going back next week to see if my vitamin D level has risen any, I was at a 9 when they took the test. It sounds like to me you're in a similar position to me, which I've been referring to as the "run around and try every non narcotic thing under the sun and see if anything sticks" phase.
However the part about the weights and working through your depression seems a little hokey to me. That would make me uncomfortable personally but i don't know what type of relationship you have with doctor, if visualization and those types of exercises are helpful for you it may be fine though. After Rereading your post though, it sounds like your doctor didnt want to deal with fibro, sent someone else to deal with you and sent you out the door.
What i'm about to say is both subjective and completely based on my personal experience so take this with a grain of salt. Years before I even knew what fibro was I had depression, being low income at the time I did not have the luxury of much ability to treat it moreso than therapy. Depression can make you sore and lethargic, that part is true. However the soreness, the pain of depression is barely an ounce to the gallons of pain and exhaustion I've experience with fibro. It's the difference of having a paper cut vs having a stab wound, at least it is in my case. So while what this person is saying is technically true, if the best they can do is tell you to deal with it, I'd be finding another doctor because they're either A) not listening to you or B) aren't familiar enough with the diseases to realize there's that great a difference in some people.
Like I said, I may be way off base, but i'm hearing you say "i'm in agony" in your post and i'm comparing it to my agony with fibro, which for me when I'm having a bad day I'm limping and can barely walk. Fibro sadly because it's so hard to put down on paper and show to someone, and because there's so many things that can go with it and be part of it, seems to have this mentality of "oh they're just whining there's nothing wrong with them" and the treatment you describe sounds like this is the way they approached it.
Also not to scare you but if you do go on cymbalta be wary it can have a pretty nasty withdrawal process.
Hi Girlz, I have to say I was cringing while reading your discussion who ever said put the weights on your ankles and push through the pain., is out of her/ his mind, they obviously don’t have a clue what fibro is ! I think you need to do your own search for a dr that understands fibro… There are no real fibro specialists, there are great dr’s that understand it, after seeing my 2nd rheumatologist she said why don’t you see dr. So& so because he likes fibro… He likes fibro … Seriously ! So I went to see him, & it turns out after our 2nd visit he asked me to send him copies of the research I had done on fibro. I hate to contradict your dr. But depression does not cause fibro pain… Fibro pain & the lose of life as we knew it, can cause depression. I’m not a dr. But It’s very upsetting that a dr would be so ignorant !!!
And as for the vit D deficiency… My son is very low also, but he has never complained of pain, fatigue or anything, & for those with fibro that are low in D, taking the supplement vit d & d3, has never cured fibro, if it does it didn’t help me, I take my D3 everyday for years now… ( don’t get me wrong, supplements are very important& I take many) but I get upset when I here that a dr is blaming fibro on lack of motivation, depression & d deficiency )
The amitriptyline is a good med, but not the first or second choice for fibro… When they said go home and research the side effects, I would have said why don’t you go home & research fibro.,
It’s not in your head, & it’s my thought you should be looking for a better dr.
Fibro can be managed… But not with weights !!
I would find a different doctor. I am on Nortriptyline, I take it at night for sleep which it works great for since I was waking up multiple times every night. I still wake up but not as much. I was just started on Neurontin for the chronic pain - have not noted any difference yet but it has only been 1 1/2 weeks and I am not up to the dose she wants for me. I have heard for some people Neurontin works well, only time will tell. I also take paxil - I take it for panic attacks and have used it for years - really effective for this. Luckily I have had no bad side effects except for dry mouth from the Nortriptyline.
Exercise is good but it is hard for me because of the pain and when I do exercise I pay for it the next day. I try to push myself as much as I can but it is hard. Sound's like your doctor does not know much about Fibro and I would see some one else that will be open minded.
I have taken amitriptyline for about 3 years or so without any side effects I call it my wonder drug or at least at the time I did. When I started taking it I had bad brain fog, pain that would shoot through my right side of my head over and over all day, wasn't sleeping good, etc. I just started Cymbalta last Saturday night and I'm started to feel better the pain hasn't totally stopped but I see a good improvement. I hope you feel better soon and the meds help. Also, I still take amitriptyline with the Cymbalta and find it works better now.
I suffer from depression and fibro. the depression causes fatigue and pain, but it also causes a "fog". the two conditions overlap in several areas, but the pain is different. both conditions cause sleeping problems. the depression fog is different. a depressive fog is often caused by racing thought and uncontrollable thoughts rather than the good ole fibro fog. Depression is caused by a chemical imbalance in the brain and antidepressants have helped me with all my pain and fatigue. not so much sleep.
i don't know if your doctor thinks it is in your "head" per se, or if she is thinking it may be in your brain. ** I would like to note as a sufferer of depression that it has very little to do with feeling "sad". I remember before I learned to manage it the "depressed" or down mood versus the 'up' or manic mood. neither mood really had anything to do with emotion, but more to do with energy and thought processes.
My point is while the two conditions seem to overlap symptoms, they are very different. If you are not helped by an antidepressant, you need to be firmer with your doctor that you have fibromyalgia, not depression.
Wow, your NP is a real quackadoodle and a torturer, to boot! HOW in the world will strapping weights to your ankles and wrists help with your fibro??? You're not trying to necessarily strengthen them, since fibro isn't an illness of weak muscles. And your own motivation isn't stopping you, the bloody fibro pain is! She has NO business treating fibro patients and she should be ashamed to offer such advice and not update her medical knowledge on fibro. Sheesh!
Oh, and no, sorry, depression is not causing the pain, try the other way around! I swear, you should find some research on fibro (I believe you can find some on our site) and mail it to her, while warmly encouraging her to read it. The quackadoodle.
Amiltriptyline is used to help you sleep, is it not? I take its cousin, Nortriptyline, and it works fine for that. I'm not sure how effective Amiltriptyline is at handling fibro pain. I think that some folks are helped by it. But you may need more than that to help with pain.
I myself would drop that doc and NP like a hot potato. When looking, it might help to ask the receptionist who answers your call if this doc has a lot of experience treating fibro and is comfortable doing so. Might not get rid of all of the quackadoodles but it might help. You could even ask how he/she typically treats it.
Good luck and stick with it. Having a good GP is so important. Mine has been wonderful throughout all of this nightmare.
Petunia
PS: I'm no medical expert, just going by my own feelings on the matter and how I'd handle it. I see that Ciarawyn has some interesting thoughts on the matter of pain and depression and fibro, to offer a different perspective. Again, I can only tell you my own experiences. Ciarawyn shows there is more than one experience in regards to pain and depression, so it's good to see a variety of opinions offered to you.
the pain of depression is not the same kind of pain that fibro gives. Depression pain is an ache... It comes and goes. The more overwhelmed you feel the worse it gets. I wish I could explain the difference. One thing I can tell you is that with age depression symptoms seem to ease. mostly because you learn to recognize and "grab" the thoughts and emotions and moods that may not be appropriate for what is really going on around you. You can learn through therapy (if you councilor is any good) or through self reflection to not react but to analyze your thoughts and emotions. Maybe it isn't 'easing' but rather learning to live with it.
I think that because I went through so much with my depression and doctors I don't take any crap from them. LOL. They work for me. I see the first appointment as an interview. Either they are going to listen or blow you off. They get 1 chance from me. (Unless you live out here in the middle of nowhere like I do) there are many more to choose from. I would drive an hour or so to have a doctor who is listening and working with me.
Hi, That is Crapy advice! Putting weights on will not help. I mean WTH do these people think we go through every single day. Pain, fatigue, memory loss, trouble concentrating, fear, rejection, headaches,IBS, essential tremor, gerd, I. Cystitis… Worst of all we go to the doctor for help and we are not respected, listened to, misdiagnosed most of the time. I’m sorry, when I hear stuff like this it really ticks me off. I am so sorry you are going through this! There is some great advice on here. What works for some wont work for others but at least here we have one another to talk things over with, and learn from each other. This really is a great support group here. Hugs, Leanne
Thank you all sooooo much!! I am seeing a new doctor on Tuesday. In the mean time im waiting on my "Quackadoodle" (love it!!) to fill out the FMLA paperwork for me. Ive been out since last Friday in so much pain that I cant think straight. I went to work yesterday to fill them in and give what doctor notes I had (cuz I intially sprained my knee) and they said that when I come back I either need to have the FMLA filled out or I will have been catergorized as "Quit" my job is my insurance for both me and hubbs. He has hyperthyroidism and we are still awating tests to find out if he has the same disease that claimed his sister late last year. So we really depend on my insurance. There have been times where I think it would be WAY easier if I was on disability but ive heard that you have to be unemployed for a year to even be considered and my family cannot survive without both parents working. Can anyone shed some light on that process for me? I may even qualify for my PTSD and depression. And since my doctors keep saying im in pain because im depressed maybe itll help me case haha ^.^