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Old 08-02-2007, 07:57 PM   #1
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I am desperate for advice/insight!!!!!!!!!

Hello to all! I had posted on the boards a while back but was struck with such severe fatigue I didn't even have the energy to type for a while. (The severity of my fatigue skyrockets periodically and then goes back to being "normal" for me, normal being debilitating and severe.)
I was diagnosed with fibro in May (also with CFS) and my doctor prescribed me adderall. I would love to hear from anyone else taking adderall to combat the awful fatigue and brain fog associated with fibro/cfs. How much, how often do you take and how much benefit do you see?
I started on 5mg 2x per day, which did not do anything. Was increased to 10mg 2x per day. Still no great improvement. At first I felt that my mind was clearer, but that only lasted a few days. I still napped all day and felt weak, tired and as if my brain were switched on "low."
I would not increase dosage with a doctor's okay, and so I am consulting with him every few weeks. I am up to 35 to 45 mg per day, and to be honest, the results are not non-existent, but not great. Maybe my epxectations were too high. I knew I wouldn't feel the way I did before this illness took over, but I think deep down I was hoping. I do not fall asleep at the drop of a hat during the day now, but I also am still extremely tired all day and could probably take all 45 mg at once and still fall asleep within a few hours. I seem to metabolize this drug very fast and a dose lasts me barely 3 hours. I think my thinking is a tiny bit clearer, but my memory is still shot, I still forget words every other sentence and do stupid, annoying things like lose things and forget things all the time, which I never used to do.
How high should I be willing to go on this stuff? If I am seeing only minimal improvements on 45 mg, how much improvement might I see at, say, 60 mg, or 75 mg? Will there really be that much of a difference that it's worth sticking with this?
I must say too that I have had absolutely NO side effects except for a slightly tinny taste in my mouth at first, and again each time I increase the dose. So does that mean I am not yet at an effective dosage, or does it just mean this drug hasn't and will not really have an affect on me?

 
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Old 08-03-2007, 08:54 PM   #2
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Smile Re: I am desperate for advice/insight!!!!!!!!!

Hi! I'm sorry I have never been on this medication. I am responding to bump this to the top again. I would be interested in hearing what others have to say about this. I have severe fatigue too, and would like to possibly try this med if I knew more about it. Thanks so much. GBU

Sal


Hello to all! I had posted on the boards a while back but was struck with such severe fatigue I didn't even have the energy to type for a while. (The severity of my fatigue skyrockets periodically and then goes back to being "normal" for me, normal being debilitating and severe.)
I was diagnosed with fibro in May (also with CFS) and my doctor prescribed me adderall. I would love to hear from anyone else taking adderall to combat the awful fatigue and brain fog associated with fibro/cfs. How much, how often do you take and how much benefit do you see?
I started on 5mg 2x per day, which did not do anything. Was increased to 10mg 2x per day. Still no great improvement. At first I felt that my mind was clearer, but that only lasted a few days. I still napped all day and felt weak, tired and as if my brain were switched on "low."
I would not increase dosage with a doctor's okay, and so I am consulting with him every few weeks. I am up to 35 to 45 mg per day, and to be honest, the results are not non-existent, but not great. Maybe my epxectations were too high. I knew I wouldn't feel the way I did before this illness took over, but I think deep down I was hoping. I do not fall asleep at the drop of a hat during the day now, but I also am still extremely tired all day and could probably take all 45 mg at once and still fall asleep within a few hours. I seem to metabolize this drug very fast and a dose lasts me barely 3 hours. I think my thinking is a tiny bit clearer, but my memory is still shot, I still forget words every other sentence and do stupid, annoying things like lose things and forget things all the time, which I never used to do.
How high should I be willing to go on this stuff? If I am seeing only minimal improvements on 45 mg, how much improvement might I see at, say, 60 mg, or 75 mg? Will there really be that much of a difference that it's worth sticking with this?
I must say too that I have had absolutely NO side effects except for a slightly tinny taste in my mouth at first, and again each time I increase the dose. So does that mean I am not yet at an effective dosage, or does it just mean this drug hasn't and will not really have an affect on me?[/QUOTE]

 
Old 08-04-2007, 05:12 PM   #3
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Re: I am desperate for advice/insight!!!!!!!!!

sal,
thanks for responding. I'll be happy to check in with you every so often to let you know how it's working for me.

Can anyone else out there help us out with some insight or share experiences with using Adderall for serious fatigue and brain fog?

 
Old 08-05-2007, 10:35 AM   #4
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Re: I am desperate for advice/insight!!!!!!!!!

I guess no one is currently taking adderall for fibro?

 
Old 08-06-2007, 06:51 AM   #5
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Re: I am desperate for advice/insight!!!!!!!!!

sorry kiddo, i dont take it either. heard of it. just not willing to add more meds at this time. with strokes and infections being an aspect of my reality, along with fibro i have to be cautious what i try.
i have adapted my life to my energy level and mind ability. it is a daily thing.
i hope you get a hit from someone here. and i hope it helps you.
peace,
bluelakelady

 
Old 08-06-2007, 12:02 PM   #6
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Re: I am desperate for advice/insight!!!!!!!!!

sorry, not on adderall..however, im seeing my rheumatologist and would like to discuss this possibility with him, as i also have fatigue and fibro fog. so perhaps I will be giving it a go soon and I can update you.

 
Old 08-06-2007, 03:09 PM   #7
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Re: I am desperate for advice/insight!!!!!!!!!

Finally, someone else like me. I take Adderall also for the fatigue associated with the Fibro. Right now I am taking 20 mg 2 x per day. I do not take the XR so it only works for about 4 hours max. I know you also should not take it after about 4pm in the afternoon.

I take so many other meds due to also having BiPolar that I have a hard time sleeping anyway. I am not saying I am not fatigued, I just don't sleep. I am also giving sleeping meds but they only work for about 2-3 hours at best.

I told my doc I feel like Elvis Presley sometimes, they give me drugs to wake up and drugs to put me to sleep. I am not making light of this but sometimes I have to put it like that or I would just sit and cry due to the meds.

You have to keep in mind sometimes you just have to rest your body whether you want to or not.

I was so happy to see this thread you cannot imagine. You also have to look and see what other meds you are on b/c they may be making you tired also even though you are taking the adderall. With my colorful cocktails I still get the fibro fog at times. I had several TIA strokes about a year ago and am no longer able to work which was a crushing blow to me. I am fighting SSD at this time.

Hang in there and I hope this helps somewhat.

God Bless!

 
Old 08-06-2007, 03:44 PM   #8
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Re: I am desperate for advice/insight!!!!!!!!!

Innocence, I wish you lots of luck and look forward to sharing experiences on adderall. Hopefully we will both get to a point where the experiences are good and not just another thing to add to the list of "tried that, didn't help." Good luck!

Jenn, I just laughed out loud, because the Elvis Presley reference is the exact thing I said to my doctor when I refused an sleep meds!

I am not on any other meds but Adderall. I can and have taken 20 mg at 7pm and been in bed asleep by 10 or 11 with no troubles. I usually take my last dose around 4 anyway, just because I take my first one early in the day and don't want too much time to elapse between doses. It seems like if I take a dose in the morning and let it completely wear off, then any doses I take that day feel useless. I have no idea why this is.
Today I tried taking my total dosage in 4 incriments instead of 3 to keep the drug in my system longer. It didn't really help. Here it is almost 7pm and I have already fallen asleep twice today and feel like I am walking in quicksand.

I have to clarify that it seems like I use the terms fatigued and weak interchangeably, but in fact they are two very differnet symptoms. The weakness is deep muscle weakness, which makes me feel heavy and slow and generally as though I can barely move. The adderall, I think, is helping a tiny bit with the fatigue. The weakness is constand and progresses all day long, so I think what I feel later in the day is not the adderall not working, but rather the weakness just overpowering everything. I don't think there's a med out there to help with muscle weakness, or at least my doctors have not offered any. (Well, actually, adderall is the only med they offered besides Amitryptiline, which I tried a few years ago and it made me exhausted and foggy all day.)

I hope more people will post their experiences with adderall to help us all out. I'm sorry that you guys are going through this as well, but I'm happy to see I'm not alone!

 
Old 08-06-2007, 04:42 PM   #9
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Re: I am desperate for advice/insight!!!!!!!!!

Desperate 1 This is the only med you take for the fibro? The deep muscle weakness is totally different from the fatigue. I had a hard time accepting the fibro diagnoses and am still working on it but am getting there. I wouldn't accept that I could not go 24/7 as I always did. I was finally told that I had a life before fibro and that life was over. I have a new life now and it is different and I need to accept it.

I have learned that the deep muscle weakness doesn't bother me nearly as much if I take several sometimes many breaks during the day and put my feet up. I last later in the day when I do this.

If you don't mind me asking when were you diagnosed? What type of doc do you see for your fibro.

innocence how are you doing with your fibro? What type of meds are you on and when were you diagnosed? If I am being to nosy just say so. I just like to know if anyone finds things that help.

Fibro Hugs to all!

 
Old 08-06-2007, 07:02 PM   #10
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Re: I am desperate for advice/insight!!!!!!!!!

Hi Jenn,
The hardest thing in the world is accepting this whole new "life," which isn't much of one right now. I used to work full-time, was going to school for my masters, worked out at least 5 days a week, spent lots of time with friends, wrote in a journal daily and still had time and energy for other hobbies and interests. Now I cannot even keep a journal because my hands get so weak after writing two sentences. A friend commented that my handwriting now looks like her mother's, who has Parkinson's! I work less than part-time making very little money, and I am desperate to find something that will at least allow me to work and make enough money to live.
I was diagnosed in May after 4 years of searching. (Well, actually I took 2 years off from looking after hearing one too many docs say they couldn't figure it out so it must be depression.) My neurologist mentioned MS but as soon as the MRI came back okay he changed his mind. My primary tested for lyme, b12 deficiency, and a few other things and then flat out told me she had no idea. My rheumatologist finally diagnosed me with fibro and cfs in May and that's when I was offered the adderall, though I didn't start taking it for another month after that.
I see a phsychiatrist, who has documented that I do not suffer from depression, although admittedly the symptoms have taken their toll on me to the point that I do have a bit of situational depression. (I try not to get too down or to pity myself. That will only make me feel worse). She and my other doctors are skeptical about the fibro/cfs diagnosis, only because it seems the rheumy diagnosed me with something just to be able to start treating the symptoms, but all of my docs agree that if the adderall gives me enough energy to keep researching my symptoms and continuing to push for more answer then I should use it.
I agree I have many, many of the symptoms of both fibro and cfs, but I am also doing more research on lyme disease, and I don't care how many times they test my TSH, I still think I need a complete thyroid screening. (I had one 3 years ago that was supposedly normal, but since then I have only gone way downhill). Beyond that I don't know what else it could be.
The muscle weakness is unrelenting, no matter how much rest I get, and at this point I pretty much rest all day. Nothing works. I can't shower to wake myself up because the slightest bit of heat and steam put me out for hours. Funny, because a cool shower used to give me a nice burst of energy and made me feel revived.
I am so grateful to read what others have tried and what meds have been helpful, or even what hasn't worked for people.

 
Old 08-06-2007, 07:05 PM   #11
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Re: I am desperate for advice/insight!!!!!!!!!

p.s. Jenn, check out the thread titled "My solution for fibro of 15 years." I found it while searching for adderall info. I don't know if the person who posted it is still on the boards, but I found it provided me with a little encouragement to stick with the adderall a bit longer.

 
Old 08-07-2007, 06:07 AM   #12
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Re: I am desperate for advice/insight!!!!!!!!!

Eugh!! Just saw my rheumatologist and he said that he thinks a low dose of a tricyclic antidepressant for promoting good sleep is the way to go, rather than Adderall, Modafinil, etc etc. Grr!

 
Old 08-07-2007, 06:36 AM   #13
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Re: I am desperate for advice/insight!!!!!!!!!

Innocence, I'm so sorry to hear that. I tried the tricyclic route first, about 2 1/2 years ago. They gave me Amitriptyline (sp?), which I guess is common, although my new rheumy told me it is quite an antiquated treatment considering all the new options. Anyway, the tricyclic DID NOT help me sleep, but it did make me extremely groggy and foggy during the day, and I gained about 8 pounds my first week on it. I tried it for 6 months and then told my doctor there was no way I could continue with it. After 6 months I had a pretty good idea that it was not going to help and in fact was just making things worse.
Some people, however, have posted that they've had great results with it, so this is just my story. There's lots of info if you search this board, and also the CFS and MS boards. I remember a very insightful thread about amitryptiline on the MS board not too long ago.

 
Old 08-07-2007, 05:41 PM   #14
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Re: I am desperate for advice/insight!!!!!!!!!

I can relate to it all from anyone who has the fibro. They first thought mine was lupus, MS and who knows what else... you know how that fibro fog seems to make us forget

I use to work approximately 60-70 hours a week, do the advanced TaeBo for an hour and then ride my bike down by the river anywhere from 12-14 miles and this was everyday. Then it was like joints it my body decided it just didn't like my job, Billy Blanks, my bike or the river. Maybe it was a combination of all of them. It was my therapy though. I have been on the adderall for quite some time and won't give that up only b/c I have to have some kind of life. Right now I feel like I have none. I don't mean to be a party pooper but haven't had very many good days later and don't understand why.

Here is my problem and am wondering if anyone here can help with any suggestions. Normally, I have the most pain with my muscles and joints when it is cold or rainy or if it is even going to rain. Well right now where I live all last week the temperatures were in the high 90's and now this week they have been right at 100-104 everyday. I am hurting so bad all I want to do is sit down and cry or go to the ER room which I never go there. I promise it is not to get any type of pain pills as I have those on hand but the pain is worse than it has ever been. Normally when I take my pain medication and muscle relaxers, I can get my pain level to about a 4 on a scale of 1-10 but it has been about a 10 the last couple of days and all day today it has been about a 15. I really don't know what to do.

My husband works late hours but tonight he goes to the VFW post as that is his one night out which he deserves. The only other person here with me is my 19 year old son and he has a broken foot and I hate to cry in front of my kids. My 16 year old is at his dad's tonight. I apologize for complaining but I really don't know what to do. Normally when it gets tough I will use a heating pad but that doesn't work today. I can't use cold compresses because that makes it much worse. I didn't mean to go into this as I try to stay as positive as possible but I am really scared today with how bad I am hurting. I will stop whining now.

Have any of you all ever had the trigger point injections for your fibro yet? If so, how did they work for you? My doc gave me 4 the last time I was in there and I am not sure how I feel about them yet but I may give them another try.

Thanks to all for listening and for all the advice you have been giving. It has been a very big help.

God Bless all and fibro hugs, but not to tight.... don't want to hurt anyone.

 
Old 08-08-2007, 07:07 AM   #15
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Re: I am desperate for advice/insight!!!!!!!!!

hi jenn,
you are experiencing a flare up. it happens. let your body rest. so what if you cry? kids are stronger than you think. holding it in will only prolong the flare up. stress from hiding how you feel will relate as pain.
go to bed, watch a movie, make some popcorn, take some time out for your body. listen to her. she knows best. our bodies tell us loud and clear what they want. listen.
i have had years of this and the one thing i learned is fighting the flare or faking it only makes it last longer. so, breath, rest, drink plenty of water and stretch often so you do not stiffen up.
this flare will pass. they all do. you hold on to that for now. kay?
peace,
bluelakelady

 
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