Fibromyalgia pain

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Jennarushing

New member
Joined
Sep 4, 2020
Messages
2
Reason
DX FIBRO
Diagnosis
10/2019
Country
US
State
OH
Hello all,
My name is Jenna, and I am 26 with fibromyalgia. Two years ago, I also had flat foot reconstructive surgery. Ever since my life completely changed. I believe that my fibromyalgia was brought on by a combination of both stress and having surgery in general flared it up. I have constant structural pain and nerve pain in both of my feet, but the pain is through my whole body. I have rib pains, and major pain in the neck and shoulder area. I have Fibro fog very bad, and always am exhausted and almost like I could pass out. I’m currently on Lyrica, Duloxetine, and meloxicam. It helped for about a month, and then it no longer does. I don’t like the idea of just constantly upping my dosage, so I’m considering trying to get off of medications. I exercise every day my body allows me to, am positive about the situation for the most part and really keep my mental space at a good place with this. I’m glad I found this forum because I never have felt like somebody understands or really knows what it’s like.. I love everyone that supports me through this but talking to them about this topic can only do so much when they don’t physically and mentally know what it’s like. It’s such an emotional roller coaster sometimes, but I do my best to do what needs done and stay positive. Any advice would be appreciated for what you all do to stay on top of the pain. Thank you so much in advance!
 

Affinity

Distinguished member
Joined
Sep 9, 2020
Messages
176
Reason
DX FIBRO
Diagnosis
05/2014
Country
US
State
TX
Hi Jennarushing this is definitely something we all struggle with: how to handle the pain.

I have been tracking my activity and flare ups and I am about 5-6 weeks into a flare and it's mindblowing how easily my mind goes into "always feeling this way". I know that 6 weeks ago I felt much better and was able to be much more active. But it feels like dealing with this constant pain makes it seem like that is all I have ever known. I hope that makes sense, but my point is that we have good days. Sometimes we have good weeks and even good months. Getting through the flares in order to regain a sense of normalcy, however different that is from our life before, is what I have to do in order to try to feel better. Sometimes I feel like giving up but that means never ever feeling good again and I can't believe that!

I don't know if it will work for you but I recently started physical therapy and they have been very helpful in releasing trigger points (which is sounds like you have along your ribs and nick and shoulders, maybe your feet, too). They are also helping me rebuild my strength and correct my posture and movements so hopefully I can resume a lot of the activity I am used to. Even last year, post fibromyaligia diagnosis, I was running 10K a few times a week, and I want to get back there, even though right now I struggle walking for a half hour. Anyway, it sounds like with your foot surgery the PT could be very helpful. This week my PT released several trigger points around my c-section scar that have been there over 6 years since I had my kid and that other doctors told me they could do nothing about. I am amazed that in one treatment she could release pain I have been dealing with constantly for 6 years, and I didn't even go see her for that, it was just something she saw was needed based on my other issues and history. Anyway, I encourage you to see if something like PT would be helpful for you, too. I have tried a lot of things but right now this is helping me the most.

And as far as medication goes I think that is something we all struggle with deciding what works best for us. There is nothing wrong with taking meds but if they aren't helping then it seems silly to keep with them. Talk to your doctor and figure out what might work best for you. Currently I am not on any meds for fibromyalgia although I do take a muscle relaxant and ibuprofen for TMJ disorder. Those things helped at first with the fibromyalgia, too, but it seems like my body got used to taking them and they don't seems to help anymore. I use a lot of ice and heat. I do have an old prescription for tramadol which I might take a few times every few months during a flare, but it is nothing I take regularly. I am also considering going on medication because this flare is hardest on me emotionally, and like you I feel like I have little support, but I have been working on creating a team of support around me including my PT, my chiropractor, my nutritionist/counselor and I am working on finding a therapist I can talk to about mostly the stress and pain management factors. Good luck on finding your own support team, too!
 

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
1,644
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Somewhere
Hello all,
My name is Jenna, and I am 26 with fibromyalgia. Two years ago, I also had flat foot reconstructive surgery. Ever since my life completely changed. I believe that my fibromyalgia was brought on by a combination of both stress and having surgery in general flared it up. I have constant structural pain and nerve pain in both of my feet, but the pain is through my whole body. I have rib pains, and major pain in the neck and shoulder area. I have Fibro fog very bad, and always am exhausted and almost like I could pass out. I’m currently on Lyrica, Duloxetine, and meloxicam. It helped for about a month, and then it no longer does. I don’t like the idea of just constantly upping my dosage, so I’m considering trying to get off of medications. I exercise every day my body allows me to, am positive about the situation for the most part and really keep my mental space at a good place with this. I’m glad I found this forum because I never have felt like somebody understands or really knows what it’s like.. I love everyone that supports me through this but talking to them about this topic can only do so much when they don’t physically and mentally know what it’s like. It’s such an emotional roller coaster sometimes, but I do my best to do what needs done and stay positive. Any advice would be appreciated for what you all do to stay on top of the pain. Thank you so much in advance!

Hi Jenna,

We are all here for you and we understand what it is like. I recommend you read my post called "Advice for managing fibromyalgia (especially for newcomers)". Several people have said that the suggestions in that post are good and have helped them. You are completely right that upping the dosages of drugs is not the way to go. This is a systemic problem and has to be treated in a whole-body manner. Treating the symptoms (ie: pain-dulling medication) is not helpful in the long run. Your fortitude in exercising every day you can is commendable. It's one of the things I recommend. Let me know if you have questions and let us all know any way we can help.
 

irvinj46

New member
Joined
Jul 7, 2020
Messages
6
Reason
DX FIBRO
Diagnosis
04/2020
Country
US
State
IL
This disease is definitely a difficult one to explain to people who haven't experienced what we have. Honestly I always thought this disease was an excuse for people to just be lazy, but now being diagnosed with it I feel awful for ever thinking that. I think you're doing great by maintaining a positive mind and heart. Sometimes the hardest part is continuing to maintain that positive attitude. These forums are fantastic to help maintain our sanity and to talk with others who are going through all these issues.
 

willow

New member
Joined
Sep 28, 2020
Messages
3
Reason
DX FIBRO
Diagnosis
06/1998
Country
US
State
AZ
I feel I can relate in some way. I have fibro and I had several foot neuroma surgeries. My feet are a mess - the nerves and scar tissue causes awful sensations in my feet. I can't drive anymore either because of the discomfort and the inability to bend the feet etc in certain ways to do certain tasks.. I think having fibro makes it so much harder too - the combo of the two is tough. So, I feel for you. I think too that foot problems can be invisible to others making it hard for them to understand. It is very frustrating.
 

Jennarushing

New member
Joined
Sep 4, 2020
Messages
2
Reason
DX FIBRO
Diagnosis
10/2019
Country
US
State
OH
Thank you everyone!

I have made an appointment to lower my dosage of medication. I have been keeping up on my foot exercises, eating healthy, exercising, and using heat for the deep pains. Keeping a positive mindset is hard, but it’s best to try.

Does anyone have advice for foot pain specifically? My fibromyalgia is bad everywhere, but in my feet it’s unbearable. I think mainly due to the surgeries. I push through each day without complaining, but really I’m drowning in pain.

Thanks in advance!
 

DonaldKBradley

New member
Joined
Sep 23, 2020
Messages
2
Reason
Undiagnosed
Diagnosis
00/0000
Country
CA
State
BC
Hello all,
My name is Jenna, and I am 26 with fibromyalgia. Two years ago, I also had flat foot reconstructive surgery. Ever since my life completely changed. I believe that my fibromyalgia was brought on by a combination of both stress and having surgery in general flared it up. I have constant structural pain and nerve pain in both of my feet, but the pain is through my whole body. I have rib pains, and major pain in the neck and shoulder area. I have Fibro fog very bad, and always am exhausted and almost like I could pass out. I’m currently on Lyrica, Duloxetine, and meloxicam. It helped for about a month, and then it no longer does. I don’t like the idea of just constantly upping my dosage, so I’m considering trying to get off of medications. I exercise every day my body allows me to, am positive about the situation for the most part and really keep my mental space at a good place with this. I’m glad I found this forum because I never have felt like somebody understands or really knows what it’s like.. I love everyone that supports me through this but talking to them about this topic can only do so much when they don’t physically and mentally know what it’s like. It’s such an emotional roller coaster sometimes, but I do my best to do what needs done and stay positive. Any advice would be appreciated for what you all do to stay on top of the pain. Thank you so much in advance!

Please be positive we all are with you for your support. I know your situation my mother also a fibromyalgia patient. I had seen her suffering. Everything will be all right soon. Don't lose your hope.
 

Affinity

Distinguished member
Joined
Sep 9, 2020
Messages
176
Reason
DX FIBRO
Diagnosis
05/2014
Country
US
State
TX
I do some foot exercises to help my foot pain but since I have not had surgery on my feet I would be hesitant to make suggestions of that sort for you. My exercises are simple ones where I stretch out my toes and then ball them up as tight as I can. I also do balancing exercising on one foot and use my rebounder barefoot to help build foot strength as well. I would probably try to work with an expert to resolve the foot pain. My physical therapist has helped with me other pain from surgeries that happened years ago and so I wonder if a PT could help your feet?
 
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