Considering medication

Affinity

Distinguished member
Joined
Sep 9, 2020
Messages
122
Reason
DX FIBRO
Diagnosis
05/2014
Country
US
State
TX
Hello lovelies, I would love to hear your positive and negative experiences in trying mediation, especially for Cymbalta and/or Lyrica.

I have been managing my fibro symptoms for years now and they come and go. Sometimes it's all okay and other times it's really very challenging. Lately it has been very challenging as I have been experiencing a serious flare up for over a month now .

For years I have resisted medications. I did try gabapentin last year but it just made my fibro fog worse without really helping my pain levels. I am now considering trying Cymbalta or Lyrica not only for the pain but with the long term emotional fatigue of fighting this thing plus the anxiety that comes from never feeling good due to chronic pain. I would love to hear good and bad experiences. I have resisted for so long because in my 30's I tried many different antidepressants due to depression and anxiety none of which worked well for me and even made me feel worse.

I have been mostly using meditation and exercise to manage my symptoms. Over the past 6 months I have dealt with increased pain and weakness as I work to find a consistent exercise program. I have had trouble finding consistency because I have nagging injuries that keep cropping up and it seems like it has just been getting worse instead of getting better. I am now working with a physical therapist and feel optimistic about this process although I recognize it will take a while to release my numerous trigger points and retrain these muscles to function properly again. I already feel quite a bit better about my hip pain which was making exercise like walking very difficult for me. I am also working with a chiropractor and in recent months have also done myofascial release as well as craniosacral therapy. I can usually find a few days of relief after myofascial release but my symptoms return after 2 or 3 days which isn't affordable as a long term solution. It's been depressing because I have been working consistently and compassionately with myself and with professionals to try to manage my pain and symptoms but I feel like I am losing that battle and then can't show up for my family and share in simple activities like hiking or going to the lake to go swimming without taking a huge hit. And those setbacks recently are much more numerous than the gains I am making so I feel like I am slowly losing this battle which leads me back to the idea of considering medication.

I know many of you have dealt with the same things for many years. Thank you for taking the time to read and to respond with your experiences.
 

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
893
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Somewhere
Finding consistency is one of the greatest challenges! I try constantly for that but don't succeed because this syndrome is so unpredictable.

My personal approach these days is not to use medication. Fibromyalgia is a systemic syndrome and the best approach to treating it is to treat the whole body with exercise, good nutrition, a positive attitude, and so on. I fully understand your wanting to try medication, and if you decide to try it I wish you all the best. But I wonder if you have ever tried applying all of the suggestions I make in my post "my advice for managing Fibromyalgia". I think I would recommend to you that before you use medication that only blocks the pain (and may become non-effective in time), you try applying those things I suggest just to see if you might be able to feel better without the medication. After all, if you could, that would be great.

I have not tried lyrica, but I did try cymbalta back when I was trying drugs, and it didn't actually help me. I have heard sometimes people get bad side effects from those drugs, although I didn't.
I did get a medical cannabis card and I use that in conjunction with CBD 1:1. That isn't something I do daily, but sometimes if the pain is bad in the evening it really helps me to get a good night's rest and wake up feeling better.
 

Affinity

Distinguished member
Joined
Sep 9, 2020
Messages
122
Reason
DX FIBRO
Diagnosis
05/2014
Country
US
State
TX
Finding consistency is one of the greatest challenges! I try constantly for that but don't succeed because this syndrome is so unpredictable.

My personal approach these days is not to use medication. Fibromyalgia is a systemic syndrome and the best approach to treating it is to treat the whole body with exercise, good nutrition, a positive attitude, and so on. I fully understand your wanting to try medication, and if you decide to try it I wish you all the best. But I wonder if you have ever tried applying all of the suggestions I make in my post "my advice for managing Fibromyalgia". I think I would recommend to you that before you use medication that only blocks the pain (and may become non-effective in time), you try applying those things I suggest just to see if you might be able to feel better without the medication. After all, if you could, that would be great.

I have not tried lyrica, but I did try cymbalta back when I was trying drugs, and it didn't actually help me. I have heard sometimes people get bad side effects from those drugs, although I didn't.
I did get a medical cannabis card and I use that in conjunction with CBD 1:1. That isn't something I do daily, but sometimes if the pain is bad in the evening it really helps me to get a good night's rest and wake up feeling better.
Thank you for reply. For a long time my approach has been to not use medication and I have managed things mostly with the advice you posted which I did read and agree with 100%. The only reason I am considering medication at this point is that I feel I am not able to manage things for the past 6 months or so with those advice tools alone, and especially the past month has been incredibly difficult. And this creates a dangerous cycle of stress in my opinion where even trying to feel better starts to cause stress instead of actually helping. And yet I will continue with those self care tools, even on the bad days, because I know they do help, but I honestly just need more help than they can provide.

Medical cannabis would be my #1 choice but unfortunately in Texas is is not legal for fibromyalgia. CBD hasn't been particulary helpful to me on it's own although I did use it for several months last year because I thought it was worth trying. Oh how I wish medical cannabis were an option!
 

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
893
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Somewhere
I fully understand the cycle of disappointment and frustration when trying to manage a chronic condition.

What I do, when it just gets too hard for me to continue with my routine and self-care because I am feeling too painful and discouraged (and this does happen now and then) is I give myself some time off. That doesn't mean I eat anything I want! Or drink, or anything harmful. but I just give myself maybe three days to lie on the couch, watch movies, read books, and just tell myself that it is OK to take a break. Three days is my maximum, because if I do more then I get in a rut of non-activity and depression as a result.

This approach reduces any stress I may be feeling from the frustration, and watching movies or reading distracts me from everything so my stress doesn't go up. Then, after 3 days max, I go back to my activities again, even if it is 5 minutes' worth, and then I tell myself what a good job I have done. From there I can usually work my way back up. No matter how bad you are feeling, activity is needed.

If you find the pain is too excruciating, try some medication, but try taking it only at night and maintain your schedule in the daytime. Especially get outside in the morning...I find my whole day goes better 100% of the time if I go outside in the morning.

And my advice would be don't take the medication daily, but only as needed. I actually use two Advil and a muscle relaxant for some kinds of pain instead of the cannabis, and find that has helped me more than those expensive prescription drugs like lyrica.
Best of luck!!
 

JayCS

Senior member
Joined
Sep 5, 2020
Messages
212
Reason
DX FIBRO
Diagnosis
02/2020
Country
GE
Hi - I agree with sunkacola.
First I tried all web-recommended herbs against pain and for sleep, to no avail.
Then I grudgingly tried the doc-recommended meds from which I - as ever - got adverse effects (skin from COX2-blockers & Metamizol, epilepsy from Tilidine) or no effect (Diclofenac).
Only amitryptiline helped me sleep, praps also to relax muscles, but also caused 7 adverse effects (weight, higher pulse, worse eye accomodation, numbness, tiredness, dry mouth & cough, epilepsy).
In that time I improved my sleep management and muscle relaxation, which is both holding on after tapering Ami. out after 4 months.
I have a much better quality of life now without it, without any fibro-meds, but I think I needed it for about 2 months and shouldn't have followed the high schedule of my main doc (10mg then 25mg), but should have used the 2mg-drops in my own customized schedule.
 

Affinity

Distinguished member
Joined
Sep 9, 2020
Messages
122
Reason
DX FIBRO
Diagnosis
05/2014
Country
US
State
TX
I fully understand the cycle of disappointment and frustration when trying to manage a chronic condition.

What I do, when it just gets too hard for me to continue with my routine and self-care because I am feeling too painful and discouraged (and this does happen now and then) is I give myself some time off. That doesn't mean I eat anything I want! Or drink, or anything harmful. but I just give myself maybe three days to lie on the couch, watch movies, read books, and just tell myself that it is OK to take a break. Three days is my maximum, because if I do more then I get in a rut of non-activity and depression as a result.

This approach reduces any stress I may be feeling from the frustration, and watching movies or reading distracts me from everything so my stress doesn't go up. Then, after 3 days max, I go back to my activities again, even if it is 5 minutes' worth, and then I tell myself what a good job I have done. From there I can usually work my way back up. No matter how bad you are feeling, activity is needed.

If you find the pain is too excruciating, try some medication, but try taking it only at night and maintain your schedule in the daytime. Especially get outside in the morning...I find my whole day goes better 100% of the time if I go outside in the morning.

And my advice would be don't take the medication daily, but only as needed. I actually use two Advil and a muscle relaxant for some kinds of pain instead of the cannabis, and find that has helped me more than those expensive prescription drugs like lyrica.
Best of luck!!
Thank you again, and I love your suggestion of taking 3 days off! I did not mention it but I am already taking muscle relaxants and ibuprofen daily for TMJ Disorder. I have been taking them for a while and my TMJ doctor wants me to take them for 3-6 months total in order to get my TMJ disorder under control. When I first started taking them they did help my fibromyalgia as well but it's been probably 2 months and I am not really getting any noticeable benefit from them but I am still taking them due to his advice and explanation about how it needed to take that long to get this situation under control.

What your post made me realize is that since the pandemic started, and my fibromyalgia symptoms have grown more and more out of control during that time, I have changed how I manage things on my end. I work from home and am lucky enough to have a lot of flexibility in my schedule so before the pandemic hit I was free to rest for hours at a time during the day as needed. Since the pandemic hit and my husband has been working from home, and my 6 year old has been home all day long, too, at least until this month as school has started, I have stopped doing that sort of self care. My family doesn't understand my condition and if I were to spend hours resting my husband would act like he understood at the time but he would grow resentful and use that against me in the future. And so whereas I used to spend more time resting on the couch, maybe watching tv or reading, now I usually stay in my office and work or do a different sort of self-care than maybe is good for my stress like doing mediation videos but isn't as good for my body since I am still sitting in my office. To be honest I don't think I can spend 3 days or even 1 full day resting even though I love that idea because of the family dynamics. If I lived alone I would definitely be doing that but I feel too much guilt from my husband and like I am setting a bad example to my daughter as well. Maybe that's something I need to work on more, the lack of support and understanding I feel at home, but honestly I don't know how to handle it any differently because if it causes issues at home for me it isn't helping reduce my stress, unfortunately. But I can see the direct correlation that having everyone at home and my changes in how I manage my condition as a result causing the increase in symptoms.

One thing I have started doing just this week is going to bed at like 8 pm and watching videos or reading in bed instead of even watching tv on the couch. I am doing this for a few reasons. First I feel more comfortable in my body lying in bed and that's been a major issue lately is that I am hurting and just can't get comfortable lately. Second it promotes me going to bed earlier and getting more sleep which I hope in turn will help to alleviate some of my symptoms also. Third it seems acceptable to my family for me to go to bed early at 8 pm at the same time my daughter goes to bed whereas resting during the day seems unacceptable. I do rest during the day occasionally but only on the most severe pain days and ideally my pain would never get that severe.

So anyway thank you for your suggestions. I am going to see how a week or two of my new early bedtime helps my symptoms. I don't really want to try these medications but I feel like I am running out of options. Maybe more rest will help enough?
 

Affinity

Distinguished member
Joined
Sep 9, 2020
Messages
122
Reason
DX FIBRO
Diagnosis
05/2014
Country
US
State
TX
Hi - I agree with sunkacola.
First I tried all web-recommended herbs against pain and for sleep, to no avail.
Then I grudgingly tried the doc-recommended meds from which I - as ever - got adverse effects (skin from COX2-blockers & Metamizol, epilepsy from Tilidine) or no effect (Diclofenac).
Only amitryptiline helped me sleep, praps also to relax muscles, but also caused 7 adverse effects (weight, higher pulse, worse eye accomodation, numbness, tiredness, dry mouth & cough, epilepsy).
In that time I improved my sleep management and muscle relaxation, which is both holding on after tapering Ami. out after 4 months.
I have a much better quality of life now without it, without any fibro-meds, but I think I needed it for about 2 months and shouldn't have followed the high schedule of my main doc (10mg then 25mg), but should have used the 2mg-drops in my own customized schedule.
Thank you for sharing your experience! I am lucky that after many years I have mostly gotten my sleep under control and so that isn't so much as issue for me although it used to be a real challenge. I find that valerian root or melatonin helps me and lately I take melatonin most nights but at least I sleep well enough.

If I do have an issue with sleep it's that I think my brain needs less sleep than my body, and so like last night I went to bed pretty early and then woke up a couple of hours earlier than I needed to. My alarm was set for 6:15 and I woke p at 4 and again at 5 thinking it was time to get up. This is why I think resting in bed as I described above might help me feel better. I am not sure if it will, but I am desperate for a solution!

Ultimately I am trying to find a way to boost my mood in order to make the management of my symptoms to feel easier. I definitely prefer a natural approach and am willing to try anything, including things I have tried in the past. I agree with you about lower doses as well, if I do end up trying a medical route then I would also want to start with lower doses.
 

JayCS

Senior member
Joined
Sep 5, 2020
Messages
212
Reason
DX FIBRO
Diagnosis
02/2020
Country
GE
Just realising that my wife is coping worse with my conditions than I am... So I'm trying to find out new ways of communicating.
Seems I have to say more clearly 'it hurts, and I need a break', 'it doesn't hurt much', 'it hurts, but it's OK' etc.

Going to bed earlier helps me. Not always acceptable to my wife, have to work on that, too. Not working 9 or 10 is OK, when I start working it'll have to be at 9 if part time and 7 or 8 if I ever manage full time. I often sleep fairly well now, not in the clinic tho. Drinking earlier in the day helps. Herbs & 5HTP/L-Tryptophan didn't/don't... Amitryptilne helped a bit, but with many adverse fx.
 

Affinity

Distinguished member
Joined
Sep 9, 2020
Messages
122
Reason
DX FIBRO
Diagnosis
05/2014
Country
US
State
TX
I probably need to work on my communication as well but I feel like my husband just doesn't get it. Like he doesn't understand the chronic nature of this thing we are dealing with. But that's another topic I think!

I have some 5HTP maybe I should try it again... I just added back in an adrenal support complex that has helped some in the past so maybe I will wait a few weeks before making any other supplement changes.
 

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
893
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Somewhere
To be honest I don't think I can spend 3 days or even 1 full day resting even though I love that idea because of the family dynamics. If I lived alone I would definitely be doing that but I feel too much guilt from my husband and like I am setting a bad example to my daughter as well. Maybe that's something I need to work on more, the lack of support and understanding I feel at home, but honestly I don't know how to handle it any differently because if it causes issues at home for me it isn't helping reduce my stress, unfortunately. But I can see the direct correlation that having everyone at home and my changes in how I manage my condition as a result causing the increase in symptoms.

Affinity,
Here's my opinion (which you didn't ask for) on what you said here. You need to sit down with your husband, and have a very serious talk with him. Tell him in no uncertain terms what you need, and make sure you say NEED, not want or "would like to have" or that it would be "helpful". Tell him what you have said here - that since the pandemic things have gotten worse, increased your symptoms, and why. Tell him that you are going to rest more, because you need that for your health, and if you don't, you run the risk of become disabled and then he will have to do all the work. I would suggest you also tell him that if he doesn't want to believe you, or wants to resent it, that is on him, but you will absolutely not listen to any guilt trips or resentful talk about you getting what you need for your health because this is your life at stake. Let him know you will still get your work done, but it has to be done in a manner that allows you rest when you need it. And then stick to this and make him adapt.

You would absolutely NOT be "setting a bad example" to your daughter if you take the rest you need. In fact, IMO, you are setting a bad example for her if you refuse yourself the care you need for your health. There's a huge difference between being lazy and simply taking care of yourself. Your daughter should learn that difference, and learn from your example that it is important to take care of your body and mental health, and that taking care of yourself doesn't mean you won't still be a productive and hard worker. Those of us who were taught never to take a break, just to work work work and never let up or show our needs are the ones suffering for that approach to life now. ( take my word for this, I am one of those). Don't pass that on to your daughter.

As I said, you didn't ask for advice, but I can't help myself. I hope I am not intruding on you by saying all this. It just irks me to no end that a life partner would treat their spouse like this. I had a partner who did this to me and I got rid of that person, and have felt immensely healthier since then. I am of course not suggesting you get a divorce! Just saying that you don't need to put up with this. Let him know that this is not some whim, but is your life, and if he cares about you he needs to adapt to it just as you have to.
 

Affinity

Distinguished member
Joined
Sep 9, 2020
Messages
122
Reason
DX FIBRO
Diagnosis
05/2014
Country
US
State
TX
Affinity,
Here's my opinion (which you didn't ask for) on what you said here. You need to sit down with your husband, and have a very serious talk with him. Tell him in no uncertain terms what you need, and make sure you say NEED, not want or "would like to have" or that it would be "helpful". Tell him what you have said here - that since the pandemic things have gotten worse, increased your symptoms, and why. Tell him that you are going to rest more, because you need that for your health, and if you don't, you run the risk of become disabled and then he will have to do all the work. I would suggest you also tell him that if he doesn't want to believe you, or wants to resent it, that is on him, but you will absolutely not listen to any guilt trips or resentful talk about you getting what you need for your health because this is your life at stake. Let him know you will still get your work done, but it has to be done in a manner that allows you rest when you need it. And then stick to this and make him adapt.

You would absolutely NOT be "setting a bad example" to your daughter if you take the rest you need. In fact, IMO, you are setting a bad example for her if you refuse yourself the care you need for your health. There's a huge difference between being lazy and simply taking care of yourself. Your daughter should learn that difference, and learn from your example that it is important to take care of your body and mental health, and that taking care of yourself doesn't mean you won't still be a productive and hard worker. Those of us who were taught never to take a break, just to work work work and never let up or show our needs are the ones suffering for that approach to life now. ( take my word for this, I am one of those). Don't pass that on to your daughter.

As I said, you didn't ask for advice, but I can't help myself. I hope I am not intruding on you by saying all this. It just irks me to no end that a life partner would treat their spouse like this. I had a partner who did this to me and I got rid of that person, and have felt immensely healthier since then. I am of course not suggesting you get a divorce! Just saying that you don't need to put up with this. Let him know that this is not some whim, but is your life, and if he cares about you he needs to adapt to it just as you have to.
@sunkacola I know you are right and your post brought me to tears. And yet ... I am not sure if I can actually do it. I have had so many conversations like this already and I am probably way too sensitive, but I know you are ultimately and absolutely right.

Today I had an argument with my husband (we rarely argue) because I mentioned I want a full length mirror for our bedroom and he gave me a huge lecture about finances and how irresponsible I am and how I am always spending money. First off, it's my money, and second I have wanted a mirror for a year and a half and have not purchased one yet because I did not want to spend the money. He was completely condescending and talked about my PT bills and how I need to prioritize. Well, I already cut my budget and paid for 10 sessions of PT in advance but because I talked to him over a week ago about my concerns over making this financial investment he is now using that as an excuse to lecture me and the only reason I am bringing this up here is that this is his and our pattern. He was a very good listener and seemed concerned and understanding when I talked to him about the PT cost (which I am paying for by myself, by the way). But now later, when I mention buying something not really isn't even very expensive he gave me a lecture as if I were a child. I know when I have talked to him before about the fibro he is at first very understanding and then later tries to use what I told him against me. I don't know, maybe we need counseling or something. I have started avoiding talking to him about things because of this tendency of his to eventually kind of be a jerk over things I tell him. The more I write about this the more I realize it is a huge problem. And also one that I don't really want to address when I already feel overwhelmed by so many things in my life, mostly my health. Our marriage is stable if not supportive, and I worry about threatening the stability, too. Maybe I am wrong and if I had a client come to me I would encourage them to talk about it but I am just not sure I am ready. Still, I appreciate your advice. I don't want to leave him or my daughter but I know my health suffers immensely because I do too much in order to live up to their expectations.
 

Affinity

Distinguished member
Joined
Sep 9, 2020
Messages
122
Reason
DX FIBRO
Diagnosis
05/2014
Country
US
State
TX
My response is awaiting a moderator and so I am adding it again here. Not sure why it needs moderation but it's been almost a full day!



I know you are right and your post brought me to tears. And yet ... I am not sure if I can actually do it. I have had so many conversations like this already and I am probably way too sensitive, but I know you are ultimately and absolutely right.

Today I had an argument with my husband (we rarely argue) because I mentioned I want a full length mirror for our bedroom and he gave me a huge lecture about finances and how irresponsible I am and how I am always spending money. First off, it's my money, and second I have wanted a mirror for a year and a half and have not purchased one yet because I did not want to spend the money. He was completely condescending and talked about my PT bills and how I need to prioritize. Well, I already cut my budget and paid for 10 sessions of PT in advance but because I talked to him over a week ago about my concerns over making this financial investment he is now using that as an excuse to lecture me and the only reason I am bringing this up here is that this is his and our pattern. He was a very good listener and seemed concerned and understanding when I talked to him about the PT cost (which I am paying for by myself, by the way). But now later, when I mention buying something not really isn't even very expensive he gave me a lecture as if I were a child. I know when I have talked to him before about the fibro he is at first very understanding and then later tries to use what I told him against me. I don't know, maybe we need counseling or something. I have started avoiding talking to him about things because of this tendency of his to eventually kind of be a jerk over things I tell him. The more I write about this the more I realize it is a huge problem. And also one that I don't really want to address when I already feel overwhelmed by so many things in my life, mostly my health. Our marriage is stable if not supportive, and I worry about threatening the stability, too. Maybe I am wrong and if I had a client come to me I would encourage them to talk about it but I am just not sure I am ready. Still, I appreciate your advice. I don't want to leave him or my daughter but I know my health suffers immensely because I do too much in order to live up to their expectations.
 

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
893
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Somewhere
If it is a huge problem, and your health is suffering immensely then you need to do something about the situation. Otherwise you are unnecessarily sacrificing yourself.

You can get a full length mirror that hangs on the back of the door for less than $10 at Walmart. Not elegant, maybe, but would do for now.
 

JayCS

Senior member
Joined
Sep 5, 2020
Messages
212
Reason
DX FIBRO
Diagnosis
02/2020
Country
GE
I'd try counseling. Or put that to debate, for starters. Or try something in between like a controlled dialogue-time, which is actually a chain of 6 monologues: An allotted time once a week, like Saturday 4p.m. on a sofa or a walk, 6x15mins where each of the partners talks three times about themselves, their feelings, their inner landscape, without the other one interrupting. Praps it will just have the effect of bringing you closer again. I like doing that with my wife. I'd read about it, but it was also suggested in one of the few counseling sessions we take once in a while.
 

Affinity

Distinguished member
Joined
Sep 9, 2020
Messages
122
Reason
DX FIBRO
Diagnosis
05/2014
Country
US
State
TX
Thank you both, I had a conversation with my husband about all of this yesterday and I do think it was helpful. Jay, he actually suggested exactly what you are suggesting, where at least once a week he can check in with me and let me tell him what's going on, etc. It's not just about him listening it's also about me being able to talk about things I would rather not discuss. I don't know how everyone else feels but I really dislike talking about how terrible I feel! But holding it all in isn't going to work and so having a regular check in is a good place to start.

It's true that he is frustrated with the pandemic and with the fact that I feel lousy so often, but a lot of how I feel is also related to internalized guilt and frustration over my own situation, too. And so we are both going to work on this together and each in our own way, and hopefully I won't feel so alone in dealing with all of this. A large part of my own work is not only managing my physical symptoms better but also working to better understand and deal with the link between my mental and emotional symptoms, as well. I did express strongly that I feel guilty for trying to take adequate care of myself because I am afraid he is judging me and upset about it, whether he really is or not. I also expressed that one of my biggest disappointments is that he treats this all like "my problem" instead of trying to support me so I feel like we are in this together. He said he did not know how to do that and that it is my problem and he is who he is and not to expect more from him. But I also reminded him of other times in our marriage where I felt he was emotionally supportive and the types of things he would do in the past and I think that really made him think and reflect on how his own behavior has grown more cold in recent years. But anyway the conversation was a starting place. Thank you sunkacola for encouraging me to do something I did not even want to consider but that I also know will be helpful in the long run.

I am still considering medication but I am going to wait it out for now and see how it goes. As I progress with my physical therapy and as the heat lets up here I think I will (hopefully) get past this current flare up. One of the big triggers this time was overdoing it in the Texas summer heat and thankfully things are cooling off.
 
Top