1. < Fibromyalgia

Fibromyalgia pain: Let's connect

Posted by clownscrytoo @clownscrytoo, Oct 22, 2016

Is there anyone here that suffers from fibro? I had the 'tender spot test' several years ago and I had 17 out of the 18. I try my hardest to get through the pain with my 4 hydrocodone/acetaminaphine pills a day, Tiger Balm rubbed into areas that are the worst, light exercises, and distracting myself with hobbies or chores, etc; but there are many occasions where none of that helps and I spend most of the day holding down the couch, getting up about 30-45 minutes after that, walking/standing around the house for 15-20 minutes, or sitting for about 15-30 min. I do not drive and my husband works 6 days a week, overtime almost every day, so I'm alone a lot. my wonderful husband is very supportive and I am very grateful for that, but my only other friends are online, out of state, and I will probably never even get to meet them. when extreme pain takes over, my depression takes over and it is so difficult to find hope. does anyone have tips for fibro, whether diet or over-the-counter meds (I've tried them all, I think), or anything, besides hobbies and such? I've tried every over-the-counter med, and the Tiger Balm does cover some of what the pain pill doesn't help, but I'm hoping one of our members might have some knowledge that could help. I'd really appreciate it.
hugz,
Clownscrytoo

Interested in more discussions like this? Go to the Fibromyalgia Support Group.

Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Nov 15, 2018
In reply to @peggyann69 "Well, if on lisinopril, for example, someone who is on too high a dose will manifest..." + (show)
@peggyann69

Well, if on lisinopril, for example, someone who is on too high a dose will manifest fatigue and flat affect. When I was in the midst of some awful anxiety inducing traumas, I was put on the higher doseof bllod pressure med. Once my life settled down and I dealt with the trauma, my doctor noticed I seemed fatigued, cut my dose in half. And I perked up!
RE: deep breathing, maybe doing it in a group would feel safer. I too feared it at first because noticing my breathing just enhanced my anxiety. It took practice, but now I am grateful to be able to do deep breathing in any setting--like the dentist's chair!--and I do experience oxygen going through my body and calming me down. Just another tool in my toolbox so I can manage living in a stressful world without meds. (Been there, done that, no more psych meds for me...)

Jump to this post

Hi @peggyann69

Some great examples of using meds and and dealing with anxiety. Also a good idea about breathing in a group situation, where the panic will be lessened by others in the room. When anxiety is heightened because of a new situation (new med, etc.) the more you can do in a group rather than alone, the better off you are. When we are alone, the feeling of anxiety goes up because we think about every feeling that we have rather than focusing on other things.

Of course, if symptoms get worse, calling 911 is important (and getting checked out for anything serious).

REPLY
Parus | @parus | Nov 15, 2018

@hopeful33250 I have decided to start taking it at night as I had wondered if noticing changes in how I felt after taking it. I asked the pcp cma about this a couple of days ago and she had to ask pcp first. I will admit I do have med-phobia and try hard not to think about thus...possibly a touch of PTSD from some ugly experiences/reactions which is why taking it a bedtime was scary as I might not wake up and no one would know why. We all have silly fears that can become monsters. I now know I am not allergic to it.

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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Nov 15, 2018

@parus Your plan is certainly worth a try. I wish you much success with it. I really feel that ACE Inhibitors are good meds, they have helped my heart function a lot better than before. (My injection fraction was very low before I started taking them 20 years ago and it's normal now) I also take a beta blocker to keep my heart rate under control and I always take it at noon. If I take the beta blocker at bedtime I get the strangest dreams, they really aren't nightmares, but just very busy, vivid dreams.

Feel free to post anytime, I'll be home most of the day. We are having snow in Michigan and the trucks are not yet out with salt, so I'm here to stay😂

REPLY
Mentor
Ginger, Volunteer Mentor | @gingerw | Nov 15, 2018
In reply to @parus "This ACE inhibitor has me so messed up. So discouraged as I was doing better. This..." + (show)
@parus

This ACE inhibitor has me so messed up. So discouraged as I was doing better. This happened before w/ those stupid 6 month check-ups designed to enable quality health. Designed to line corporate pockets!! Started this on on Monday. Let my body adapt I am told. What about my mind that is so frightened now because the body cannot obey instructions?? I cannot even hold a pencil!! I am ready stop this med and risk a stroke which may come about because this med has me scared. Anyone else experience something like this? This is scary for me. Thing is my BP is not that high and fluctuates. This feels awful and too much like those awful psyche meds. Maybe that is why I am so frightened.

Jump to this post

@parus It's a catch-22 situation. Definitely call a professional into your dilemma. Always here to lend a shoulder to lean on...
Ginger

REPLY
1 reply
lioness | @lioness | Nov 15, 2018
In reply to @parus "@hopeful33250 I have decided to start taking it at night as I had wondered if noticing..." + (show)
@parus

@hopeful33250 I have decided to start taking it at night as I had wondered if noticing changes in how I felt after taking it. I asked the pcp cma about this a couple of days ago and she had to ask pcp first. I will admit I do have med-phobia and try hard not to think about thus...possibly a touch of PTSD from some ugly experiences/reactions which is why taking it a bedtime was scary as I might not wake up and no one would know why. We all have silly fears that can become monsters. I now know I am not allergic to it.

Jump to this post

@parus hi glad your feeling better this is what my Dr told me to was take it at night but to do it at same time all the time not to take it anytime. .

REPLY
Parus | @parus | Nov 15, 2018
In reply to @hopeful33250 "ACE Inhibitors are relaxing, @parus. This is a quote from the Mayo Clinic website, "Angiotensin-converting enzyme..." + (show)
@hopeful33250

ACE Inhibitors are relaxing, @parus. This is a quote from the Mayo Clinic website,

"Angiotensin-converting enzyme (ACE) inhibitors help relax blood vessels. ACE inhibitors prevent an enzyme in your body from producing angiotensin II, a substance in your body that narrows your blood vessels and releases hormones that can raise your blood pressure. This narrowing can cause high blood pressure and force your heart to work harder."

I take it at night - sleep like a baby and I'm not thinking about how I'm feeling every moment. (I'm also helping my heart to relax as a bonus.)

Do you have ny heart valve problems or diastolic dysfunction?

Jump to this post

@hopeful33250 I had read the info on Mayo and that helped me understand better about ACE inhibitors. No heart valve issues or diastolic dysfunction has been mentioned and none that I know of. I appreciate the encouragement and information. Why they just prescribe without explaining bothers me. I sometimes have high blood pressure and sometimes I do not. It is uncomfortable when they prescribe a med just because of fluctuating BP. Trying to believe they have a valid reason other than numbers on a BP cup. Rather like a shrink prescribing an antidepressant without taking in the entire picture. I know because of fibromyalgia things can be confusing. I was even told one time I don’t have fibromyalgia because Cymbalta and Lyrica don’t help.
I do have a hard time trusting and no one
can help with this but me.

REPLY
3 replies
Parus | @parus | Nov 15, 2018
In reply to @peggyann69 "Well, if on lisinopril, for example, someone who is on too high a dose will manifest..." + (show)
@peggyann69

Well, if on lisinopril, for example, someone who is on too high a dose will manifest fatigue and flat affect. When I was in the midst of some awful anxiety inducing traumas, I was put on the higher doseof bllod pressure med. Once my life settled down and I dealt with the trauma, my doctor noticed I seemed fatigued, cut my dose in half. And I perked up!
RE: deep breathing, maybe doing it in a group would feel safer. I too feared it at first because noticing my breathing just enhanced my anxiety. It took practice, but now I am grateful to be able to do deep breathing in any setting--like the dentist's chair!--and I do experience oxygen going through my body and calming me down. Just another tool in my toolbox so I can manage living in a stressful world without meds. (Been there, done that, no more psych meds for me...)

Jump to this post

@peggyann69 This is helpful as I have anxiety issues. I do the breathing to help calm myself but seems my fears were working overtime. On 10 mg which is a low dose. Going to try taking it at bedtime. With all of the positive input and support I am doing better. Possibly high BP can cause fatigue. I am always so tired which is discouraging too.

REPLY
Parus | @parus | Nov 15, 2018
In reply to @gingerw "@parus It's a catch-22 situation. Definitely call a professional into your dilemma. Always here to lend..." + (show)
@gingerw

@parus It's a catch-22 situation. Definitely call a professional into your dilemma. Always here to lend a shoulder to lean on...
Ginger

Jump to this post

@gingerw appreciate all of these shoulders. Comes to meds I am now the cowardly lion. @hopeful33250 mentioned cold and ice-same here too. Stay warm everyone!!

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Nov 15, 2018
In reply to @parus "@hopeful33250 I had read the info on Mayo and that helped me understand better about ACE..." + (show)
@parus

@hopeful33250 I had read the info on Mayo and that helped me understand better about ACE inhibitors. No heart valve issues or diastolic dysfunction has been mentioned and none that I know of. I appreciate the encouragement and information. Why they just prescribe without explaining bothers me. I sometimes have high blood pressure and sometimes I do not. It is uncomfortable when they prescribe a med just because of fluctuating BP. Trying to believe they have a valid reason other than numbers on a BP cup. Rather like a shrink prescribing an antidepressant without taking in the entire picture. I know because of fibromyalgia things can be confusing. I was even told one time I don’t have fibromyalgia because Cymbalta and Lyrica don’t help.
I do have a hard time trusting and no one
can help with this but me.

Jump to this post

Yes, you are right, @parus. You are your best advocate in this situation. High BP is one of those things that generally doesn't have any symptoms and so if it is fluctuating you may not be aware of it. Therefore the BP meds protect your heart muscle and arteries. Those are important things to protect. As I recall, when I started taking ACE Inhibitors I took 2.5 for a while and then 5 for a while longer and now take 10 mg.
If you can't get through to your doctor, a pharmacist can also be quite helpful in giving advice about meds. They are experts! As @lioness said, the important thing is to take it at the same time every day.

REPLY
lioness | @lioness | Nov 15, 2018
In reply to @parus "@hopeful33250 I had read the info on Mayo and that helped me understand better about ACE..." + (show)
@parus

@hopeful33250 I had read the info on Mayo and that helped me understand better about ACE inhibitors. No heart valve issues or diastolic dysfunction has been mentioned and none that I know of. I appreciate the encouragement and information. Why they just prescribe without explaining bothers me. I sometimes have high blood pressure and sometimes I do not. It is uncomfortable when they prescribe a med just because of fluctuating BP. Trying to believe they have a valid reason other than numbers on a BP cup. Rather like a shrink prescribing an antidepressant without taking in the entire picture. I know because of fibromyalgia things can be confusing. I was even told one time I don’t have fibromyalgia because Cymbalta and Lyrica don’t help.
I do have a hard time trusting and no one
can help with this but me.

Jump to this post

@parus Cymbalta and Lyrica didn't help me either Cymbalta was playing with my mind so I quit taking it told Dr.thats why I swear by natural products Fibro-Malic 4a day the other night I forgot to take them next morning I hurt so badly so I set a medicine alarm so I won't now. You know your body better then Dr,s so listen to it you know the saying if something doesn't feel good ,dont do it .That,s what I go by now.

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