I am so tired of the pain
CharisSunny
Posts: 276 Member
Please what do you do? What do you take? What can I do? I am in such a dark place and I am so tired of hurting.
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Replies
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Sorry you're in a bad place right now. Just remember there will be good days and bad days. Just make the good days more frequent than the bad and you'll do alright. Not to sound harsh, but maybe a change of attitude would help. I always used to dwell on how bad I felt. I read a lot of different books on dealing with chronic pain and it finally dawned on my that I might be making myself feel worse just continually thinking about how much pain I was in. I started acting like I wasn't in pain, changing my attitude toward it, told myself I could do things, etc. and gradually things changed. I didn't concentrate so much on my pain anymore and I was able to do things I "couldn't". I started getting my life back. Fibromyalgia hasn't beat me, I've beat it down. Do I still have bad days, yes. But they are much more infrequent and I am finally enjoying my life again. Can I do everything I could before, not everything but I've learned some other new, exciting things that I probably wouldn't have had I not been forced to slow down. Take back your life, you deserve it. Hugs.0
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I know just how you feel, I've had fibromyalgia for nearly 14 years.
Keep working with your doctors to find the right mix of medications for you. Actually, there are now two medications FDA approved for fibromyalgia, Savella and Lyrica. The Gabapentin (Neurontin) you are taking is similar to Lyrica, in the same drug class. Savella is in a different drug class, SNRI (serotonin Norepinephrine Reuptake inhibitor), similar to Cymbalta. But only Savella and Lyrica have been FDA approved specifically for fibromyalgia. Just because Cymbalta didn't work for you doesn't mean that Savella won't.
There are also other meds that can help with other fibromyalgia related issues, like Levsin for IBS, Ambien for sleeping (it actually increases deep sleep, Stage 4 (not REM), which most people with fibro aren't getting enough of), Flexaril for the worst muscle cramping days, Ultram (tramadol) and other pain meds. Again, be sure your doctors know everything that you are taking, including OTC meds.
Non-medication wise:
Slow your life down and de-stress as much as possible
Keep up your social support; there are chronic pain/fibro support groups in many areas (sounds like that is what you are doing with the YouTube log as well)
Keep a log and see what helps and what worsens your fibro: I seem to be very weather-sensitive myself and start hurting terribly about 2 days before humid/cold/rainy weather.
Try alternate methods for pain control: massage (I love deep tissue massages; I know you said that hurt so bad you cried so maybe stick with Swedish or hot stone); hot baths or showers, jacuzzi/spa. Also there is biofeedback, acupuncture, physical therapy and psychological therapy (cognitive refocusing).
Try heated mattress pad, heated blankets, heating pads; I use these daily.
Exercise 2 to 3 times per week if you can; swimming/gentle workout in a heated pool (at least 82 degrees) is best but anything low-impact or no-impact is great. See if you can find a pool specifically for people with arthritis, they are kept at 93 degrees and usually offer classes for people with arthritis of different types. Recumbent biking is good too. Avoid HIIT (High Intensity Interval Training) or working with weights more than twice per week. I know how hard it is to get to the gym and work out when you can barely get out of bed, but the endorphins really do seem to help afterward.
Hope some of this helps a little.0 -
At the risk of sounding rude "a change of attitude" does nothing for the pain, fatigue, depression, anxiety, helplessness, hopelessness, anger, resentment, loss of faith, loss of quality of life and more recently a lack of mobility.Sorry you're in a bad place right now. Just remember there will be good days and bad days. Just make the good days more frequent than the bad and you'll do alright. Not to sound harsh, but maybe a change of attitude would help. I always used to dwell on how bad I felt. I read a lot of different books on dealing with chronic pain and it finally dawned on my that I might be making myself feel worse just continually thinking about how much pain I was in. I started acting like I wasn't in pain, changing my attitude toward it, told myself I could do things, etc. and gradually things changed. I didn't concentrate so much on my pain anymore and I was able to do things I "couldn't". I started getting my life back. Fibromyalgia hasn't beat me, I've beat it down. Do I still have bad days, yes. But they are much more infrequent and I am finally enjoying my life again. Can I do everything I could before, not everything but I've learned some other new, exciting things that I probably wouldn't have had I not been forced to slow down. Take back your life, you deserve it. Hugs.
I am truly happy you have found change and your symptoms are improving but unfortunately you sound like many persons who DON'T have a chronic illness and behave as though "bucking up" is a miracle worker.
Thank you for taking the time to respond.1 -
At the risk of sounding rude "a change of attitude" does nothing for the pain, fatigue, depression, anxiety, helplessness, hopelessness, anger, resentment, loss of faith, loss of quality of life and more recently a lack of mobility.Sorry you're in a bad place right now. Just remember there will be good days and bad days. Just make the good days more frequent than the bad and you'll do alright. Not to sound harsh, but maybe a change of attitude would help. I always used to dwell on how bad I felt. I read a lot of different books on dealing with chronic pain and it finally dawned on my that I might be making myself feel worse just continually thinking about how much pain I was in. I started acting like I wasn't in pain, changing my attitude toward it, told myself I could do things, etc. and gradually things changed. I didn't concentrate so much on my pain anymore and I was able to do things I "couldn't". I started getting my life back. Fibromyalgia hasn't beat me, I've beat it down. Do I still have bad days, yes. But they are much more infrequent and I am finally enjoying my life again. Can I do everything I could before, not everything but I've learned some other new, exciting things that I probably wouldn't have had I not been forced to slow down. Take back your life, you deserve it. Hugs.
I am truly happy you have found change and your symptoms are improving but unfortunately you sound like many persons who DON'T have a chronic illness and behave as though "bucking up" is a miracle worker.
Thank you for taking the time to respond.0 -
I know just how you feel, I've had fibromyalgia for nearly 14 years.
Keep working with your doctors to find the right mix of medications for you. Actually, there are now two medications FDA approved for fibromyalgia, Savella and Lyrica. The Gabapentin (Neurontin) you are taking is similar to Lyrica, in the same drug class. Savella is in a different drug class, SNRI (serotonin Norepinephrine Reuptake inhibitor), similar to Cymbalta. But only Savella and Lyrica have been FDA approved specifically for fibromyalgia. Just because Cymbalta didn't work for you doesn't mean that Savella won't.
There are also other meds that can help with other fibromyalgia related issues, like Levsin for IBS, Ambien for sleeping (it actually increases deep sleep, Stage 4 (not REM), which most people with fibro aren't getting enough of), Flexaril for the worst muscle cramping days, Ultram (tramadol) and other pain meds. Again, be sure your doctors know everything that you are taking, including OTC meds.
Non-medication wise:
Slow your life down and de-stress as much as possible
Keep up your social support; there are chronic pain/fibro support groups in many areas (sounds like that is what you are doing with the YouTube log as well)
Keep a log and see what helps and what worsens your fibro: I seem to be very weather-sensitive myself and start hurting terribly about 2 days before humid/cold/rainy weather.
Try alternate methods for pain control: massage (I love deep tissue massages; I know you said that hurt so bad you cried so maybe stick with Swedish or hot stone); hot baths or showers, jacuzzi/spa. Also there is biofeedback, acupuncture, physical therapy and psychological therapy (cognitive refocusing).
Try heated mattress pad, heated blankets, heating pads; I use these daily.
Exercise 2 to 3 times per week if you can; swimming/gentle workout in a heated pool (at least 82 degrees) is best but anything low-impact or no-impact is great. See if you can find a pool specifically for people with arthritis, they are kept at 93 degrees and usually offer classes for people with arthritis of different types. Recumbent biking is good too. Avoid HIIT (High Intensity Interval Training) or working with weights more than twice per week. I know how hard it is to get to the gym and work out when you can barely get out of bed, but the endorphins really do seem to help afterward.
Hope some of this helps a little.
Hey Lynn, thank you for responding and thank you even more for messaging me.
I'm gonna try to respond to everything but its alotta typing
I tried Lyrica, gained about 30lbs
Same with Cymbalta.
I've just been put on an SNRI Wellbutrin, after having SSRIs do nothing or not enough for too long. I'm only a month in on the Wellbutrin so I'm hopeful it will get better. So far it's done nothing for my anxiety.
I also take Magnesium Malate but only because other fibro patients say it has helped. To add to the list there's a thyroid replacement, B12 replacement, another for energy, Metformin for the insulin resistance caused by the weight gain from the pills that DIDN'T work and Nise or Neurobion for pain.
I work out 5 days a week ( well I did prior to my most recent back injury). I usually do weights every day. My muscles have become useless so I focus on low weights/high reps. I loved working out, and felt it gave me a goal and a purpose even though admittedly I did more than I should have. I still miss it now that I'm down to simple cardio a few times a week. I've taken up aquatherapy in a heated pool twice a week; even though its coupled with TENSing and myofascial release and is usually painful I love being in the water.
I am trying to be my own advocate, research physicians, not have the disease and all its little disease buddies beat me but I am 24 years old with more doctors and pills and pains and limitations than I ever thought I'd see in a lifetime. I know I am not the only one but this is my battle and right now I feel the need to say I'm not doing well and I am tired. I'm too young to feel this defeated and I hope it fade soon, even if its just enough for me to feel human again.
Again thank you for not dismissing me and taking the time to respond, message and send a friend request. They were simple actions with great implications.
-Char
PS: my apologies for possible typos, responding on my Blackberry with achy fingers.0 -
Wow. I'm not one of "those people" telling you to just "buck up". I'm sorry if it came across that way. I've been diagnosed with fibro since 1996, I know these symptoms, etc. I was, at one time, in the place you are now. If you don't want any suggestions, why post? Do you want only people saying they know your pain and you will suffer all the time or would you perhaps like some suggestions? I tried to help without suggesting meds. I don't take any meds for this. I've changed things with diet, exercise and attitude. Sorry if it comes across condescending, but thought I'd share what has, so far, worked for me. I do hope you find something to work for you. Good luck and hope you come out of your "dark place" soon. Agains, hugs...0
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I posted because I wanted to know what others do to deal. I received two answers: one I found helpful and one I respectfully disagree with. You don't know if I've tried positive thinking, meditation, adopting a new mantra etc so you certainly can't beat me down for not thinking it works for me at the stage I'm at if u don't know my history.Wow. I'm not one of "those people" telling you to just "buck up". I'm sorry if it came across that way. I've been diagnosed with fibro since 1996, I know these symptoms, etc. I was, at one time, in the place you are now. If you don't want any suggestions, why post? Do you want only people saying they know your pain and you will suffer all the time or would you perhaps like some suggestions? I tried to help without suggesting meds. I don't take any meds for this. I've changed things with diet, exercise and attitude. Sorry if it comes across condescending, but thought I'd share what has, so far, worked for me. I do hope you find something to work for you. Good luck and hope you come out of your "dark place" soon. Agains, hugs...
It did come across as condescending and atmittedly it rubbed me the wrong way. We all have our stories and again respectfully, you are not where I am as you don't know. Sometimes wording is everything. Thank you for taking the time to respond. The advice obviously landed on the wrong ears but perhaps it will help someone else. Thank you for the hugs. *gentle hugs* and much gratitude.
-Char
Ps: typing on treadmill, I'm sure there are typos O_o0 -
At the risk of sounding rude "a change of attitude" does nothing for the pain, fatigue, depression, anxiety, helplessness, hopelessness, anger, resentment, loss of faith, loss of quality of life and more recently a lack of mobility.Sorry you're in a bad place right now. Just remember there will be good days and bad days. Just make the good days more frequent than the bad and you'll do alright. Not to sound harsh, but maybe a change of attitude would help. I always used to dwell on how bad I felt. I read a lot of different books on dealing with chronic pain and it finally dawned on my that I might be making myself feel worse just continually thinking about how much pain I was in. I started acting like I wasn't in pain, changing my attitude toward it, told myself I could do things, etc. and gradually things changed. I didn't concentrate so much on my pain anymore and I was able to do things I "couldn't". I started getting my life back. Fibromyalgia hasn't beat me, I've beat it down. Do I still have bad days, yes. But they are much more infrequent and I am finally enjoying my life again. Can I do everything I could before, not everything but I've learned some other new, exciting things that I probably wouldn't have had I not been forced to slow down. Take back your life, you deserve it. Hugs.
I am truly happy you have found change and your symptoms are improving but unfortunately you sound like many persons who DON'T have a chronic illness and behave as though "bucking up" is a miracle worker.
Thank you for taking the time to respond.
Well, nobody can tell you for sure exactly what will and will not work for you individually. That is the nature of the beast - Fibro will manifest itself differently for each individual patient and each will likely respond to different treatment options in different ways.
That said - the advice for a "Change of Attitude" is actually good advice and there is strong research to back this up. I think you may be interpreting "change your attitude" to mean "just deal with it" or something and I doubt that is what was meant. It certainly is not how I took it. "Change your attitude" really means changing your outlook on the world around you and how fibromyalgia is working within you. It also means changing your mental approach to how your going to treat your fibromyalgia.
The importance of focusing on the best mental approach is why things like Cognitive Behavioral Therapy and Behavioral Modification Therapy are so effective in treatment. The relationship between stress, mood, anxiety and behavior relative to body function and fibromyalgia pain is extremely complex. We do not know exactly how all this works and it appears that it does tend to work differently in each individual but research has shown that changing and better managing your emotional state will in fact help improve your symptoms.
You can learn more about the research behind some of this here -
http://www.fibromyalgia-treatment.com/cognitive-behavioral-therapy/
http://www.fibromyalgia-treatment.com/behavioral-modification-therapy/
My point in posting this is to simply point out that while saying "Change your attitude" may not be the smoothest use of language in making this point, what the actual research studies have shown is that changing attitudes and behaviors IS among the most effective means of treatment. You in fact CAN reduce your pain this way - at least most patients can.
BTW- the simple fact that your here and working to lose weight and get in shape (Congrats - losing 29lb is awesome!) shows that your already taking among the most positive steps you can. Exercise and being physically fit is among the most effective means of reducing fibromyalgia pain - but its also SO DANG HARD.
I hope this helps!
Terry0 -
Hello,
At the risk of sounding rude "a change of attitude" does nothing for the pain, fatigue, depression, anxiety, helplessness, hopelessness, anger, resentment, loss of faith, loss of quality of life and more recently a lack of mobility.Sorry you're in a bad place right now. Just remember there will be good days and bad days. Just make the good days more frequent than the bad and you'll do alright. Not to sound harsh, but maybe a change of attitude would help. I always used to dwell on how bad I felt. I read a lot of different books on dealing with chronic pain and it finally dawned on my that I might be making myself feel worse just continually thinking about how much pain I was in. I started acting like I wasn't in pain, changing my attitude toward it, told myself I could do things, etc. and gradually things changed. I didn't concentrate so much on my pain anymore and I was able to do things I "couldn't". I started getting my life back. Fibromyalgia hasn't beat me, I've beat it down. Do I still have bad days, yes. But they are much more infrequent and I am finally enjoying my life again. Can I do everything I could before, not everything but I've learned some other new, exciting things that I probably wouldn't have had I not been forced to slow down. Take back your life, you deserve it. Hugs.
I am truly happy you have found change and your symptoms are improving but unfortunately you sound like many persons who DON'T have a chronic illness and behave as though "bucking up" is a miracle worker.
Thank you for taking the time to respond.
Well, nobody can tell you for sure exactly what will and will not work for you individually. That is the nature of the beast - Fibro will manifest itself differently for each individual patient and each will likely respond to different treatment options in different ways.
That said - the advice for a "Change of Attitude" is actually good advice and there is strong research to back this up. I think you may be interpreting "change your attitude" to mean "just deal with it" or something and I doubt that is what was meant. It certainly is not how I took it. "Change your attitude" really means changing your outlook on the world around you and how fibromyalgia is working within you. It also means changing your mental approach to how your going to treat your fibromyalgia.
The importance of focusing on the best mental approach is why things like Cognitive Behavioral Therapy and Behavioral Modification Therapy are so effective in treatment. The relationship between stress, mood, anxiety and behavior relative to body function and fibromyalgia pain is extremely complex. We do not know exactly how all this works and it appears that it does tend to work differently in each individual but research has shown that changing and better managing your emotional state will in fact help improve your symptoms.
You can learn more about the research behind some of this here -
http://www.fibromyalgia-treatment.com/cognitive-behavioral-therapy/
http://www.fibromyalgia-treatment.com/behavioral-modification-therapy/
My point in posting this is to simply point out that while saying "Change your attitude" may not be the smoothest use of language in making this point, what the actual research studies have shown is that changing attitudes and behaviors IS among the most effective means of treatment. You in fact CAN reduce your pain this way - at least most patients can.
BTW- the simple fact that your here and working to lose weight and get in shape (Congrats - losing 29lb is awesome!) shows that your already taking among the most positive steps you can. Exercise and being physically fit is among the most effective means of reducing fibromyalgia pain - but its also SO DANG HARD.
I hope this helps!
Terry
I'm aware of the research...even from its bare bones (psych minor as it came disgustingly easily to me).
I'm also aware that you cannot always will yourself to positiivity, or worse make it stick. Believe had it been possible the 4 times I tried to wean myself off of antidepressants wouldn't have been such a dismal failure. I don't enjoy being medicated so I've tried several alternative methods. It is not working for me.
I had little intention of losing weight (didn't seem possible), I love lifting and I wanted to gain strength. The lost inches are a welcome side effect, so thank you for the compliment it does feel good to feel like I'm accomplishing something positive, even for a little while.
With thanks,
Char0
