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.

londonwc1 | @londonwc1 | Feb 9, 2021
In reply to @jamesthee "The answer may be, Daaa? My muscles (thigh, calf) have burning pain and weakness when I..." + (show)
@jamesthee

The answer may be, Daaa? My muscles (thigh, calf) have burning pain and weakness when I walk for more than a minute or so. I"ve been checked for PAD, no problem. Spine does not have significant stenosis. Are these symptoms part of fiber?

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Sounds like Neuropathy, I have it in both legs,I have to sit down in the shower and sit to brush my teeth. when my feet burn I sit with them on an ice pack.What helps the calves sometimes is a cream for sore muscles. CVS makes one called exactly that. Muscle Rub in a green box. Theres also Ben Gay.I have Fibromyalgia too but I don't think the fibromyalgia is in the calves.Its terrible to ache all the time. 24/7.First thing Get a Nerve Conduction Test. That will tell you wether you have Neuropathy or not.Its a process of iliminatiom.Good Luck. from the sunny state

REPLY
Parus | @parus | Feb 10, 2021
In reply to @gingerw "@parus Good question! I had my first dose 2 weeks ago, and go back this coming..." + (show)
@gingerw

@parus Good question! I had my first dose 2 weeks ago, and go back this coming Sunday for the 2nd dose, using Pfizer. Frankly, anymore, I am having trouble figuring what may be a flareup, and what may be the myriad of things going on with me. Fibro is the least of my concerns, honestly. Some days are good, some okay, some just rotten.

I'll watch what happens this weekend.
Ginger

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@gingerw I hear you on what may be causing what and mostly I try to keep busy and not think about things. I had my first round yesterday and go back in 4 weeks. I was asked for my red white and blue card-the one we have been told to never carry. Since I was at my regular pharmacy where the staff knew me there wasn't a problem and I could bring it later as my Medicaid plan doesn't cover this current vaccine which I do understand in a twisted way. I just stood there and looked dazed and knew to not say what I was really thinking as the employees are doing as they are instructed. Why punish them for something they have no control over?
I choose to have no more input on forbidden topics. Again, I held my tongue and even helped some others arriving and confused by which window, etc. It was nothing like when I arrived for a med refill a few days ago. It does take a while to iron out the wrinkles in the newly woven fabrics presented by the upper echelon. I chose to be kind rather than creating even more chaos and it is oft a struggle for my venomous tongue.
Thus far no side effects but it is early in this newest adventure. Yes, fibro is not terminal and it is the gift that keeps on giving and can be torturous when other things start happening in the body.
I rather went off topic which is to be expected whenever I leave my bubble.

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Parus | @parus | Feb 10, 2021
In reply to @sundance6 "Hank, Yes it is Fibromyalgia! I see it refered to with those letters. I appreciate the..." + (show)
@sundance6

Hank, Yes it is Fibromyalgia! I see it refered to with those letters. I appreciate the link to the discussion. After three days of looking I have finally found someone who is farmiliar with both Lyme and Fibromyalgia in ABQ. Talked to her briefley this morning, Saturday! She knows our medical system I am on! She also asked me about possibly Mold Exposure! Which I have thought about before but never found how to get tested! She and I are going to have a conultation visit next Thursday!
Will keep you posted!
From The Land of Enchantment!
Sundance(RB)
PS, Again, You are such a helpful and considerate person to have on MayoConect!

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@sundance6 You mentioned Lyme disease. I know I mentioned somewhere in the connect community a while back that I had Lyme disease in 1983 and when my immune system is compromised the Lyme rears its head with the burning in my legs that is inconsolable until my immune system straightens back around. This disease lingers in the system-at least it has in mine.

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1 reply
Parus | @parus | Feb 10, 2021
In reply to @fatsfat "Elavil is no longer on the market and Amitriptyline is and since it is an old..." + (show)
@fatsfat

Elavil is no longer on the market and Amitriptyline is and since it is an old drug, it’s way cheaper. I was just prescribed this but uneasy about taking it because I have tried so many other stuff that did nothing but make me worse. Norco, not an option in Florida due to the opioid epidemic and that was the only thing that gave me a better quality of life. CBD, lyrics, cymbalta, and about 20 other anti depressants,muscle relaxer,etc did nothing. My depression and pain is at the worst now and mood shifts and triggers that cause me to become so angry that they can be explosive. Doctor said he wanted me to take these to help my pain,depression and insomnia etc. I am tired of meds and already take lunesta to sleep but pain prevents quality of what sleep I do get. Virus makes things harder because what if I have a reaction and there is no help then what. I pray for God to tell me what to do. It might be be the one that works but then again I did try it in 2017 and I felt like I had a hangover the next day and felt crappy. Then again the multiple doctors had me on so many different drugs, I don’t know if it was that or combination of the hundreds of things going wrong in my body that was dismissed and every time I saw someone I was told to take this or that drug instead of getting to the root issues. Curious if anyone with fibro, ptsd, depression, nerve damage, spinal stenosis,peripheral nerve damage etc had good results. Thx

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@fatsfat Keep in mind that when you try a new medication it can take time for your body to adapt. The side effects can lessen as your body adapts. It is frustrating and uncomfortable. Try to be patient and see if things improve.
Yes, I have fibro, PTSD, depression, spinal stenosis and the list continues. The mind can play tricks. Again, try to give it a little time.

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Parus | @parus | Feb 10, 2021
In reply to @hopeful33250 "Hi @parus I had my first vaccination for COVID in mid-January and will be getting my..." + (show)
@hopeful33250

Hi @parus

I had my first vaccination for COVID in mid-January and will be getting my second one tomorrow. I did have fatigue and muscle/joint pain for a few days. I will be interested in hearing about your experience as well.

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@hopeful33250 Unknown at this time as to side effects. Back in 4 weeks.
I had my little guy for a while on Sunday-so delightful and refreshing. Dad had time to visit too after completing errands. I so enjoy the imagination at this age. We soar together! This week we were hunting Big Foot. I stay in my camper (the kitchen) where Big Foot cannot get to me. Think you get the picture. Still chuckling from the imaginary hunt.

REPLY
1 reply
lioness | @lioness | Feb 10, 2021
In reply to @parus "@hopeful33250 Unknown at this time as to side effects. Back in 4 weeks. I had my..." + (show)
@parus

@hopeful33250 Unknown at this time as to side effects. Back in 4 weeks.
I had my little guy for a while on Sunday-so delightful and refreshing. Dad had time to visit too after completing errands. I so enjoy the imagination at this age. We soar together! This week we were hunting Big Foot. I stay in my camper (the kitchen) where Big Foot cannot get to me. Think you get the picture. Still chuckling from the imaginary hunt.

Jump to this post

@parus Do glad you had your little guy

REPLY
Sundance(RB) | @sundance6 | Feb 10, 2021
In reply to @parus "@sundance6 You mentioned Lyme disease. I know I mentioned somewhere in the connect community a while..." + (show)
@parus

@sundance6 You mentioned Lyme disease. I know I mentioned somewhere in the connect community a while back that I had Lyme disease in 1983 and when my immune system is compromised the Lyme rears its head with the burning in my legs that is inconsolable until my immune system straightens back around. This disease lingers in the system-at least it has in mine.

Jump to this post

In my research the bacteria for Lyme never leaves your system! I was stricken with it 2 1/2 years ago! Very few days go by when I don't have some kind of symptoms. I've been working with a Dr. Rawls in NC using various herbs. It takes a bit for them to kick in, but I have noticed a change after a month.
Also researching Lyme I have found Body Work is a wonderful help!
Right now I am working with a Lady who does "The Trager Approach"! Works gently with your joints and muscles! It's helped me both physically and mentally!
Cost is very reasonable, $100 for 90 minutes here! Could be something different elsewhere. The technique is about 70 years old.
If not Trager I would suggest some kind of body work. There are plenty of very good licensed therapist !
From The Land of Enchantment !
Sundance(RB)

REPLY
1 reply
Mentor
Ginger, Volunteer Mentor | @gingerw | Feb 10, 2021
In reply to @sundance6 "In my research the bacteria for Lyme never leaves your system! I was stricken with it..." + (show)
@sundance6

In my research the bacteria for Lyme never leaves your system! I was stricken with it 2 1/2 years ago! Very few days go by when I don't have some kind of symptoms. I've been working with a Dr. Rawls in NC using various herbs. It takes a bit for them to kick in, but I have noticed a change after a month.
Also researching Lyme I have found Body Work is a wonderful help!
Right now I am working with a Lady who does "The Trager Approach"! Works gently with your joints and muscles! It's helped me both physically and mentally!
Cost is very reasonable, $100 for 90 minutes here! Could be something different elsewhere. The technique is about 70 years old.
If not Trager I would suggest some kind of body work. There are plenty of very good licensed therapist !
From The Land of Enchantment !
Sundance(RB)

Jump to this post

@sundance6 I looked for Trager approach practitioners near me, but the closest one is 100 miles away. Definitely not doable. Besides my fibro which is kicking up [waether changes this time of year have a lot to do with it], I have a yet-to-be-determined issue in left hip area. Could be pinched nerve, could be arthritis related, could be multiple myeloma related. I have used self-administered deep tissue massage with my knuckles, to hopefully break my pain cycle. Sleep is fairly elusive right now.

@parus How wonderful to see your grandson and son this past weekend. Around here there are honest-to-goodness BigFoot hunts, and local lore speaks of sightings of creatures undefinable by common words.
Ginger.

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1 reply
Sundance(RB) | @sundance6 | Feb 10, 2021
In reply to @gingerw "@sundance6 I looked for Trager approach practitioners near me, but the closest one is 100 miles..." + (show)
@gingerw

@sundance6 I looked for Trager approach practitioners near me, but the closest one is 100 miles away. Definitely not doable. Besides my fibro which is kicking up [waether changes this time of year have a lot to do with it], I have a yet-to-be-determined issue in left hip area. Could be pinched nerve, could be arthritis related, could be multiple myeloma related. I have used self-administered deep tissue massage with my knuckles, to hopefully break my pain cycle. Sleep is fairly elusive right now.

@parus How wonderful to see your grandson and son this past weekend. Around here there are honest-to-goodness BigFoot hunts, and local lore speaks of sightings of creatures undefinable by common words.
Ginger.

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Ginger may I ask you what area of the country you are in? I'm located in New Mexico. I would be happy to ask my Trager practionaire if she may have a list!
It is amazing how it helps the pains and symptoms we have from Fibro/Lyme!
It not only helps the body but the mind! If it makes sense that your body appreciates the kindness that you give it!
Sundance(RB)

REPLY
1 reply
Mentor
Ginger, Volunteer Mentor | @gingerw | Feb 11, 2021
In reply to @sundance6 "Ginger may I ask you what area of the country you are in? I'm located in..." + (show)
@sundance6

Ginger may I ask you what area of the country you are in? I'm located in New Mexico. I would be happy to ask my Trager practionaire if she may have a list!
It is amazing how it helps the pains and symptoms we have from Fibro/Lyme!
It not only helps the body but the mind! If it makes sense that your body appreciates the kindness that you give it!
Sundance(RB)

Jump to this post

@sundance6 We live in rural Oregon. I did ask Mr. Google for Trager practitioners near me.
Ginger

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