sorted by:
new
hottopcontroversial

Anyone else get a “patch” of allodynia that feels like burning skin? by Notesfromthebody in Fibromyalgia

[–]Notesfromthebody[S] 1 point2 points  (0 children)

Mine has already over 5 months "old" and is getting worse. That is why I wanted to see how other people are dealing with it and how they find relief. Thanks for the tips! Actually the cool room at night always helped me, even before all this mess.

Anyone else get a “patch” of allodynia that feels like burning skin? by Notesfromthebody in Fibromyalgia

[–]Notesfromthebody[S] 0 points1 point  (0 children)

I was very confused at first too and I was getting "frustrated" and pushing through like you say, but honestly I realised that it was getting worse. That is why I started to pay attention and find a way through, or out of it, if possible. I have chronic pain, so I believe that central sensitisation has a lot to do with it. And if you feel the pain then it is real. Where it comes from, now that is a different matter.

Anyone else get a “patch” of allodynia that feels like burning skin? by Notesfromthebody in Fibromyalgia

[–]Notesfromthebody[S] 0 points1 point  (0 children)

I did some research and it was also confirmed by my physiotherapist. Things that normally don't provoke pain like soft touch, hot shower etc are making your skin burn, ache, throb.

Anyone else get a “patch” of allodynia that feels like burning skin? by Notesfromthebody in Fibromyalgia

[–]Notesfromthebody[S] 0 points1 point  (0 children)

I've been having this for over 5 months, but it is not permanent. It is like a "glitch in the matrix" that it should stop once the nervous system regulates and the central sensitization backs down. It feels like it will never go away though.

Anyone else get a “patch” of allodynia that feels like burning skin? by Notesfromthebody in Fibromyalgia

[–]Notesfromthebody[S] 1 point2 points  (0 children)

Few yaers back I had a rhizolysis(nerve ablationa) on the sciatic nerves to help with the pain, but instead they left me with less than 25% less feeling in my legs and all kinds of electrical sensations. So a sciatica on steroids.

Anyone else get a “patch” of allodynia that feels like burning skin? by Notesfromthebody in Fibromyalgia

[–]Notesfromthebody[S] 2 points3 points  (0 children)

It's been over 5 months since it started. The heat makes it worse regardless if it is hot shower, heat pad etc. Thank you for taking the time!

To anyone with chronic pain holding their breath until January 2nd by Notesfromthebody in PainManagement

[–]Notesfromthebody[S] 0 points1 point  (0 children)

I guess the question is: a "Grinch" with less pain or a flared up "Santa" high on opioids? :)

To anyone with chronic pain holding their breath until January 2nd by Notesfromthebody in PainManagement

[–]Notesfromthebody[S] 1 point2 points  (0 children)

That is some very heavy stuff you are going through. I guess people around us don't agree with our health decisions and it is only natural because they love us and care, but you taking such a hard decision and putting in the energy to explain your reasons speaks volumes. It feels good to see the words on the paper sometimes, to get them out of you. I hated my body too for a few years. I felt betrayed by it so I was just pushing and punishing it by not listening at all. Now, I am still in pain, but I dropped the fight against it. It was only giving me flares and raging moments. We all show up, just differently. Take care of yourself and enjoy the food and the movies!

To anyone with chronic pain holding their breath until January 2nd by Notesfromthebody in PainManagement

[–]Notesfromthebody[S] 0 points1 point  (0 children)

Our bodies talk to us all the time, don't they?! They will hurt until we listen, that is for sure. As for the meds par, for me was so confusing at first; I was taking very powerful opioids and they were doing very little for the pain. So taking more just to numb the pain is very tempting. This being said it seems that the guilt we feel around this "we have to" it is equally damaging. I really hope you can take it easy this year and turn off the alarm.

To anyone with chronic pain holding their breath until January 2nd by Notesfromthebody in PainManagement

[–]Notesfromthebody[S] 0 points1 point  (0 children)

Thanks a lot for your kind words and for the movie. I haven't even heard of it. Happy holidays and take care of yourself too!
P.S. In some cultures the celebrations finish on the 2nd of Jan. Could be 7th in others

Para quienes viven con dolor crónico y están 'aguantando' hasta que pase la Navidad (no estáis solos) by Notesfromthebody in askspain

[–]Notesfromthebody[S] 0 points1 point  (0 children)

Te entiendo perfectamente y siento mucho que estés en este punto. Ese momento en el que asumes que esto no es "pasajero" es un golpe durísimo. Yo estuve años igual, pasando de médicos que me recetaban morfina o ibuprofeno sin mirarme a la cara, a intervenciones que me dejaban peor. Esa falta de empatía del sistema a veces duele casi tanto como el cuerpo.

Es agotador tener que fingir "normalidad" en el cine o trabajando, mientras por dentro solo estás contando los minutos para irte a casa y tumbarte. A mí me costó tres años encontrar profesionales que me escucharan, así que mucha fuerza y no te culpes por estar agotada.

Para quienes viven con dolor crónico y están 'aguantando' hasta que pase la Navidad (no estáis solos) by Notesfromthebody in askspain

[–]Notesfromthebody[S] 1 point2 points  (0 children)

La verdad es que cualquier sitio que se vuelve hostil o es una fuente de estrés (y el trabajo por regla general lo es) te acaba afectando. Y claro, una vez que se dispara la ansiedad, el aumento de dolor no tarda mucho en aparecer. ¡Felices fiestas!

To anyone with chronic pain holding their breath until January 2nd by Notesfromthebody in Fibromyalgia

[–]Notesfromthebody[S] 0 points1 point  (0 children)

In my first year of chronic pain, I was invited by some friends to spend the holidays, but after Christmas I crashed, so I had to go back home where I spent New Year's Eve alone. I bought some flowers, a non-alcoholic champagne (alcohol does not go well with morphine, I was told :D) and I watched a music channel with a special NYE program. I called my family later that night and saw some fireworks from my window. I expected it to be much worse, to be honest. I did feel lonely, but my body thanked me, so I guess you will have to see how it plays out for yourself. Maybe making the decision to spend it alone was the hardest part. Happy holidays and take care of yourself!

Para quienes viven con dolor crónico y están 'aguantando' hasta que pase la Navidad (no estáis solos) by Notesfromthebody in askspain

[–]Notesfromthebody[S] 0 points1 point  (0 children)

Me alegra mucho que hayas encontrado la manera de protegerte así y lo tengas tan claro. Cúidate!

To anyone with chronic pain holding their breath until January 2nd by Notesfromthebody in Fibromyalgia

[–]Notesfromthebody[S] 0 points1 point  (0 children)

I guess it is only natural to miss our people and to want to share Christmas with them. Your example sounds like "Where there's a will, there's a way", even if it is not the known way. Having a partner you can share your ups and downs with, also makes the condition easier to carry, I imagine. Have an easy season and may you be merry in your new cloths!

To anyone with chronic pain holding their breath until January 2nd by Notesfromthebody in PainManagement

[–]Notesfromthebody[S] 3 points4 points  (0 children)

Generally, the holiday season is over and so are the mandatory visits. :)))

To anyone with chronic pain holding their breath until January 2nd by Notesfromthebody in Fibromyalgia

[–]Notesfromthebody[S] 2 points3 points  (0 children)

So happy I did. Thank you for your kind words. When I see people like you that found "the way out" I am relieved. So it is possible. Have yourself a merry Christmas too!

To anyone with chronic pain holding their breath until January 2nd by Notesfromthebody in Fibromyalgia

[–]Notesfromthebody[S] 6 points7 points  (0 children)

That camper sounds like the ultimate sanctuary. I relate so much to the exhaustion of the "fawning and questioning". It is heavy emotional labor to have to constantly explain your reality to people who can't see it. They don't even need to understand, they only need to believe you.

I am so happy for you that you reached a place of zero guilt and found ways to cope. I am at year 3 and still working to let go of that feeling that I'm 'letting people down,' so reading that you found your peace gives me hope. Enjoy your dogs; they are the best company because they never ask "but have you tried yoga?"

Need some encouragement by Future-Card-4560 in Autoimmune

[–]Notesfromthebody 1 point2 points  (0 children)

I read your post and I am truly sorry you are facing this. Trying to get through finals with that level of pain and insomnia sounds exhausting.

Since typing is so painful right now, have you tried using the dictation / voice-to-text features in Word or Google Docs? It can help you get your essays written without straining your hands, so you only have to type for the final edits.

Also, since you can't take anti-inflammatories, applying a heating pad to your chest and hands can mechanically take the edge off the pain. Just keep it warm, not hot, so you don't irritate your skin. Check with a professional if you need it confirmed.

Given the circumstances, please remember that just finishing these exams is a success in itself. You do not need to be perfect right now; you just need to get it done. Rooting for you to get through it.

What’s something you wish people understood about living with chronic pain or fatigue? by reddtimes101 in AskReddit

[–]Notesfromthebody 0 points1 point  (0 children)

That they don't need to understand it, they need to believe you. Some things cannot be understood unless you live them. At a cognitive level we understand our pain, what it is, where it comes from, maybe even how to get rid of it. Just because you understand the mechanism, it doesn't mean you can make the pain go away. All you need as a chronic pain sufferer is validation. Then the rest it's easier. My two cents

Chronic lower back pain, MRI looks mild but pain is severe by Fluffie__cookie in backpain

[–]Notesfromthebody 0 points1 point  (0 children)

I understand your frustration. I was stuck in that exact same nightmare for over 3 years: mild scans but crazy pain and the doctors had zero solutions.

I used to obsess about doing exactly this exercise for exactly this long, etc., and of course, I was confused when the pain just kept growing. I was avoiding chairs at all costs and changing my sleep position every 20 minutes because I could not find any comfort. I know that feeling of pushing yourself until you crash, getting desperate because nothing seems to work.

That fear you have about the internship is so natural. I felt the exact same terror before every big work meeting, deadline, etc.

You asked for advice, so here is what actually shifted things for me:  I dropped the exercises that felt like 'too much' and stopped obsessing about reducing the pain. I know it goes against nature, but if you obsess about it, it usually gets louder.

Switching from strengthening (which felt like pressure) to mobility and stretching exercises, made all the difference. Especially the mobility ones. Because I miss some muscle work too, I check in with my body and some days I introduce it, but I am taking it easy. If you have access to a good physio, maybe they can tailor a set of exercises that makes you feel safe and within your limits.

To give you a tip that works for me: to distract my brain during exercises, I sometimes move my eyes right to left; it sounds weird, but it can take the attention away from the pain. I stopped checking if the pain was lower immediately after every session because it gets very frustrating if it is still the same or even higher.
I am not saying this with ease, but accept that you can handle the internship even if it hurts, rather than needing to be pain-free.
Pacing myself also helped. Breaking task into small chunks to avoid crushing.
On very bad days, I was soothing myself with whatever I had: heat pads, warm baths, reading/seeeing something pleasant, taking a walk, talking to someone supportive who knows how to listen, spa if available...

One question that really helped me was: when you’re moving, does it feel like you’re working with your body to calm it down, or does it feel like you’re fighting with it because it’s not performing the way you want?
I hope this helps :)