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.

llc927 | @llc927 | Oct 28, 2018

I also have fibro. Walking or standing is very difficult. I don't know if it will help for you but I can suggest SOME relief I have found. At first I didn't think it was that helpful but after trying it again, it helps me long enough to get to the grocery store and back home before I have to go back to bed. One thing is called SOOTHANOL X2. I bought it from Amazon. The reviews on Amazon (if you can believe everything you read) were extremely good. It's pricey but I get a little bit of relief. Be sure to use latex gloves when applying to avoid eye contact. I think it works better if you deep massage it into the skin. Another thing that gives me minimal relief (but I'm happy with ANY relief) in ICY HOT and STOP PAIN - both of which can be purchased at Walgreens over the counter. My rheumatologist suggested I use an under the desk elliptical machine for exercise since I can't stand or walk very far. It has helped a little. I bought the CUBII Pro (again from Amazon.com). Good luck. I hope this helps a little. Stay Strong!

REPLY
2 replies
lioness | @lioness | Oct 28, 2018
In reply to @llc927 "I also have fibro. Walking or standing is very difficult. I don't know if it will..." + (show)
@llc927

I also have fibro. Walking or standing is very difficult. I don't know if it will help for you but I can suggest SOME relief I have found. At first I didn't think it was that helpful but after trying it again, it helps me long enough to get to the grocery store and back home before I have to go back to bed. One thing is called SOOTHANOL X2. I bought it from Amazon. The reviews on Amazon (if you can believe everything you read) were extremely good. It's pricey but I get a little bit of relief. Be sure to use latex gloves when applying to avoid eye contact. I think it works better if you deep massage it into the skin. Another thing that gives me minimal relief (but I'm happy with ANY relief) in ICY HOT and STOP PAIN - both of which can be purchased at Walgreens over the counter. My rheumatologist suggested I use an under the desk elliptical machine for exercise since I can't stand or walk very far. It has helped a little. I bought the CUBII Pro (again from Amazon.com). Good luck. I hope this helps a little. Stay Strong!

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@llc927 Before I moved I had an eliptical and it did help I was just doing cross country motions I will look on Amazon for SoothanolX2 I do like Stop Pain also icy hot didn't help me much funny how we are the same but so different in what can help

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Parus | @parus | Nov 12, 2018

Hello fibrin folks. I have been prescribed 2 new medications one of which is eye drops that has knocked me for a loop-all the doctor mentioned was red eye. Had no idea eyedrops could have these type of side effects. Doing my best to deal only to have the primary prescribe BP medication and told to give my body time to adapt. Currently feel like I have been assaulted with a baseball bat. Not sure if it is the meds causing the problems or a fibro flare. All I know is the combination of the 2 new has robbed me of any quality of life-oh yes and thyroid medication issues still and the super flu shot. Just get told to allow my body to adapt. Very discouraged as seems my choices are to go blind and/or have a stroke without the medications which have rendered me mostly nonfunctional or get some quality of life back before I need a home alert system.
At my age I don’t have days to waste dealing with medications for age related issues. Fibro is enough on its own!!
Has anyone with fibro experienced anything similar with new meds?? How can they help with this kind of side effects-dumb question.

REPLY
2 replies
lioness | @lioness | Nov 12, 2018
In reply to @parus "Hello fibrin folks. I have been prescribed 2 new medications one of which is eye drops..." + (show)
@parus

Hello fibrin folks. I have been prescribed 2 new medications one of which is eye drops that has knocked me for a loop-all the doctor mentioned was red eye. Had no idea eyedrops could have these type of side effects. Doing my best to deal only to have the primary prescribe BP medication and told to give my body time to adapt. Currently feel like I have been assaulted with a baseball bat. Not sure if it is the meds causing the problems or a fibro flare. All I know is the combination of the 2 new has robbed me of any quality of life-oh yes and thyroid medication issues still and the super flu shot. Just get told to allow my body to adapt. Very discouraged as seems my choices are to go blind and/or have a stroke without the medications which have rendered me mostly nonfunctional or get some quality of life back before I need a home alert system.
At my age I don’t have days to waste dealing with medications for age related issues. Fibro is enough on its own!!
Has anyone with fibro experienced anything similar with new meds?? How can they help with this kind of side effects-dumb question.

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@Parus What kind of eye problems are y ou having? I do have glucoma and do drops at night but never had any bad experience with them Your B.P.must have been high for Dr to prescribe this I also have M.D in eyes .take pills for this fibro flare is enough to deal with agree

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Nov 13, 2018
In reply to @parus "Hello fibrin folks. I have been prescribed 2 new medications one of which is eye drops..." + (show)
@parus

Hello fibrin folks. I have been prescribed 2 new medications one of which is eye drops that has knocked me for a loop-all the doctor mentioned was red eye. Had no idea eyedrops could have these type of side effects. Doing my best to deal only to have the primary prescribe BP medication and told to give my body time to adapt. Currently feel like I have been assaulted with a baseball bat. Not sure if it is the meds causing the problems or a fibro flare. All I know is the combination of the 2 new has robbed me of any quality of life-oh yes and thyroid medication issues still and the super flu shot. Just get told to allow my body to adapt. Very discouraged as seems my choices are to go blind and/or have a stroke without the medications which have rendered me mostly nonfunctional or get some quality of life back before I need a home alert system.
At my age I don’t have days to waste dealing with medications for age related issues. Fibro is enough on its own!!
Has anyone with fibro experienced anything similar with new meds?? How can they help with this kind of side effects-dumb question.

Jump to this post

I'm so sorry that you are dealing with side-effects, @parus. How long ago did you start each of the meds? I realize that adapting to new meds takes time, but I can understand your frustration.

Were the eye drops for a specific eye diagnosis?

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Parus | @parus | Nov 13, 2018

@lioness @hopeful33250 thank you girls for asking. Latanoprost for a couple of years with no problem. Then 2nd one added a week ago due to some more thinning or something. This is brimonidine used 3 times a day which has me messed up big time and after appt 2 weeks ago with primary thinking no BP med pharmacy notified me I had a med ready. Lisinopril for BP. I guess this is how things are done now. The patient is the last to know. All I know is I feel like a grenade has exploded in my body and my muscles are so tight they feel rigid as steel. I did contact primary so a CMA may contact me with a message from the primary. I thought only psych meds could do this. Muscle tightness like this is not pleasant. Nor is blurred vision etc.
So discouraged. I was doing better now I am a mess again. ☹️

REPLY
4 replies
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Nov 13, 2018
In reply to @parus "@lioness @hopeful33250 thank you girls for asking. Latanoprost for a couple of years with no problem...." + (show)
@parus

@lioness @hopeful33250 thank you girls for asking. Latanoprost for a couple of years with no problem. Then 2nd one added a week ago due to some more thinning or something. This is brimonidine used 3 times a day which has me messed up big time and after appt 2 weeks ago with primary thinking no BP med pharmacy notified me I had a med ready. Lisinopril for BP. I guess this is how things are done now. The patient is the last to know. All I know is I feel like a grenade has exploded in my body and my muscles are so tight they feel rigid as steel. I did contact primary so a CMA may contact me with a message from the primary. I thought only psych meds could do this. Muscle tightness like this is not pleasant. Nor is blurred vision etc.
So discouraged. I was doing better now I am a mess again. ☹️

Jump to this post

I really feel badly for you, @parus. You have a hard time with meds altogether, don't you? That is really unfortunate. Lisinopril is an ACE inhibitor med and I take another ACE inhibitor, Enalapril. When I take it, I relax right away.

Here is some info from Mayo's website about what ACE Inhibitors do:
https://www.mayoclinic.org/diseases-conditions/high-blood-pressure/in-depth/ace-inhibitors/art-20047480
and here is some info about the brimonidine:
https://www.mayoclinic.org/drugs-supplements/brimonidine-ophthalmic-route/description/drg-20067572
Just wondering, if you called the doctor to see if you could reduce the amount of the med for short period of time to see if that would help?

I do hope you feel better soon, it is not comfortable to take a step backwards, is it?

REPLY
Mamacita, Alumna Mentor | @mamacita | Nov 13, 2018
In reply to @parus "@lioness @hopeful33250 thank you girls for asking. Latanoprost for a couple of years with no problem...." + (show)
@parus

@lioness @hopeful33250 thank you girls for asking. Latanoprost for a couple of years with no problem. Then 2nd one added a week ago due to some more thinning or something. This is brimonidine used 3 times a day which has me messed up big time and after appt 2 weeks ago with primary thinking no BP med pharmacy notified me I had a med ready. Lisinopril for BP. I guess this is how things are done now. The patient is the last to know. All I know is I feel like a grenade has exploded in my body and my muscles are so tight they feel rigid as steel. I did contact primary so a CMA may contact me with a message from the primary. I thought only psych meds could do this. Muscle tightness like this is not pleasant. Nor is blurred vision etc.
So discouraged. I was doing better now I am a mess again. ☹️

Jump to this post

Hello, parus, I am sorry you are experiencing this issue right now. For myself, tightened muscles indicated high blood pressure. Although I experienced difficulties with bp going high when I was younger and working, for some time now it has remained in the normal range.

Teresa gave you some information about the meds and possible reactions. I certainly hope you find answers soon. It is hard when we make progress in one area, and then kinks and glitches arise to muck it all up.

I also try to get a massage once a month, and get some exercise as well. But this issue does sound like more of a medicine symptom. Good luck with communicating with the medical system. It does seem to take forever to navigate the path from physician's office to pharmacy. I like Teresa's suggestion that the PCP might start you off with a lower dosage, then build up gradually to a full dose.

Fingers crossed here for you, dear!

Mamacita

REPLY
lioness | @lioness | Nov 13, 2018
In reply to @parus "@lioness @hopeful33250 thank you girls for asking. Latanoprost for a couple of years with no problem...." + (show)
@parus

@lioness @hopeful33250 thank you girls for asking. Latanoprost for a couple of years with no problem. Then 2nd one added a week ago due to some more thinning or something. This is brimonidine used 3 times a day which has me messed up big time and after appt 2 weeks ago with primary thinking no BP med pharmacy notified me I had a med ready. Lisinopril for BP. I guess this is how things are done now. The patient is the last to know. All I know is I feel like a grenade has exploded in my body and my muscles are so tight they feel rigid as steel. I did contact primary so a CMA may contact me with a message from the primary. I thought only psych meds could do this. Muscle tightness like this is not pleasant. Nor is blurred vision etc.
So discouraged. I was doing better now I am a mess again. ☹️

Jump to this post

@Parus How scary for you Another site I go to for meds is http://www.drugs.com they give you side affects it shouldn't hurt that bad ,we are our own advocate so tell the Dr you maybe allergic to some of the chemicals in this med brimonidine

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Mentor
Ginger, Volunteer Mentor | @gingerw | Nov 13, 2018
In reply to @parus "@lioness @hopeful33250 thank you girls for asking. Latanoprost for a couple of years with no problem...." + (show)
@parus

@lioness @hopeful33250 thank you girls for asking. Latanoprost for a couple of years with no problem. Then 2nd one added a week ago due to some more thinning or something. This is brimonidine used 3 times a day which has me messed up big time and after appt 2 weeks ago with primary thinking no BP med pharmacy notified me I had a med ready. Lisinopril for BP. I guess this is how things are done now. The patient is the last to know. All I know is I feel like a grenade has exploded in my body and my muscles are so tight they feel rigid as steel. I did contact primary so a CMA may contact me with a message from the primary. I thought only psych meds could do this. Muscle tightness like this is not pleasant. Nor is blurred vision etc.
So discouraged. I was doing better now I am a mess again. ☹️

Jump to this post

@parus Just read your post about the issues you currently are experiencing. The thing that first came to mind was the chemicals and drugs going into your body are just not playing well together, creating side effects that are difficult to live with. I really hope that your doctor can steer you towards a gentler regimen that will not have the debilitating side effects. Of course it may take some tapering down of the medications and then the time for the higher dose to finally leave your body but I sure hope that it comes soon for you. Remember we're always here to lend you a shoulder to lean on.
Ginger

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