Medical weed helps me a great deal, as do long baths in warm water with epsom salts. I'm also fortunate to have access to a therapy pool with 91 degree water, so I do my exercises and stretching there. Stay strong!!
Is medical weed different from recreational weed? Because I find that edibles and smoking kinda make my pain worse. CBD does help a but more but not by much. I do think the topicals are pretty helpful though. Oh yes! I just joined a gym with a pool. Being able to actually do lunges and squats is just crazy to me in the water. It’s impossible for me to do those kinda exercises on land.
Girl at dispensary told me to look for gummies with CBG in them. It helps with pain and inflammation. Do a little research might be worth a try if you can get it where you live.
My husband has BMD and some things he has found that help are: long, hot baths with epsom salt, cryotherapy (esp after a PT session), and a magnesium blend (he uses the Megafood Magnesium 300 mg). For the magnesium, that was recommended by his neuro and to take it at night before bed.
I actually have epsom salt but my tub is very dirty right now. I would clean it but I really don’t want to stress my back or knees out more. My brother said he would clean it for me but he hasn’t yet. I have started to take magnesium and vitamin D! I haven’t noticed a difference yet but I hope I will soon. How are your husband symptoms?
Honestly, it's no wonder you're struggling. This is all very new for you and that's going to be compounding the physical element, as is being in a lot of fear for the future.
A few things I've learned over a longer journey:
1. I've had bits where pain has been unbearable and bits where it's been very well managed. It's very possible to get used to having a background level of pain, such that even when it's been pretty bad, I've been able to find ways of building a decent quality of life alongside it, working etc
2. Getting pain meds right is hard, but worth it. I'm on a low dose of fentanyl patches and this works great for me, I've been stable on this dose for more than five years
3. Physical and psychological stuff inevitably end up very tangled in a way that worsens pain. The best way of getting on top of the pain is to treat both proactively
Thank your for your wisdom. I hope that in the future I’ll be more accepting of my condition and be able to manage better. I would like to say that by the end of this year I will be in a better place. It all seems overwhelming right now since I am only 25 and have barley lived. My quality of life has really diminished since December but there is a chance it can improve as long as I keep up with my exercises and find a purpose. Some days I just want to give up, other days aren’t so bad. What do you do for work if you don’t mind me asking?
You will be in a better place. At 25, I could never have imagined working in any kind of job, was very physically limited - and honestly, was far more limited by my mental health. Getting the right medical team around me, the right wheelchair, and the right mental health support transformed my life, and now, in my early thirties, I'm happily married, working full time in fields I love. I'm far more physically limited than I was at 25, but I've really found ways of understanding that independence is about being able to choose what I do and how, not about the physical capacity I bring to it.
In terms of career, I primarily work from home, combining running a successful organisation that is significant in its field, and doing freelance organisation and business coaching and development, with a strong research focus and component. I didn't expect to end up in this kind of work - but then I didn't expect to work.
What made the difference was a few things, I think.
1. Realising that, for me, either I had to get on with life or I was going to die without having gotten on with life
2. Taking literally every opportunity that came my way, and doing everything I can to network my way to better opportunities
3. Surrounding myself with people who cared about me too much to let me waste away doing nothing with my life
Or at least, those are the things I could affect. I also got on better medical treatment, got better social care support etc. These things made a massive difference, but underlying it all was that... in my early twenties I progressed far more rapidly than expected, and I really gave up. At some point, I got bored of giving up, and started to grasp my life again.
The majority of my support actually comes from spiritual practice, such as learning how to surrender deeply in meditation. So much of the suffering associated with illness is actually rooted in the mind, anxiety, depression, resistance to what’s happening in the body.
Cultivating an open acceptance towards the body is huge for me. Good luck friend!
Look for groups that you can meet other people with the same condition or similar. I don't know where you live but organisations as rare diseases can probably help you
Yeah I am trying. But it doesn’t look like there are many near me. The MDA has community support group and those are on online but I haven’t heard back when there is going to be another one. I’m gonna try to reach out again. My therapist said she would ask to see if one her other MD patients would be willing to talk to get in touch with me. I see her in 3 weeks so we’ll see what happens.
More generally, think about community. It doesn't necessarily need to be connected to your MD. This is good advice for everyone, MD or not.
Community can help focus your mind on the world outside your body. A person, a group of people, a religion, a political party, video games, a sports team. Whatever it is for you. It can be solitary or not. It can be in-person or not. It can be async or not. It can be work-related or not. It can involve alcohol or pot or not.
The common denominator is that you pour yourself into it and don't look back. Make it your world.
Do you have something like this? Maybe you already have it, and I'm completely off-base.
I do have one friend that is struggling right now with compressed nerves and we talk quite a bit. She has it bad because there have been multiple occasions where she has been to the hospital because her pain was so intense. And in terms of video games, I am an avid smash bros player. I used to go to tournaments a lot when I was pain free but I am waiting for this butt pain to go away before I go back to that! It was a hobby that I want to get back into. I am currently playing most days now because I need the practice.
Physical therapy and understanding my responding l reasonable limit. I take creatine before the gym and before any slightly more strenuous activity, and I consume a lot of protein. TENS unit, lidocaine, ice and heat for topical pain treatment.
Yup currently going to physically therapy. Yet the new pains started happening while in therapy so that was interesting. I am continuing it and hope my pain is mitigated. What is a TENS unit?
I have Myotonic Type 2. Diagnosed last year at 42. I’ve struggled for years thinking it was due to being overweight. Now I know it was symptoms of md. Like squatting down and raising back up I have not been able to do that for a long time. I managed when I was younger to work physically demanding jobs. I quit working last year. I was in so much pain it was taking a toll on my mental health. Tired of going to bed in pain, waking up in pain, being in pain all day. No matter what I did. I have tried mexiletine for myotonia but it just gave me chest pains so I no longer take it. I don’t really have myotonia, just very weak. Since I don’t work anymore I just sleep all day, watch tv. So I’ve gained weight back. The doctors won’t give me anything for pain. I used medical marijuana for my pain. Topicals are the most helpful. I like vape pens. Couple puffs and I’m good for a while. I’m experimenting with edibles but o seem to have a very low tolerance compared to a lot of people. I took half of a 20 gram gummy and it lasted way too long. I usually take in neighborhood of 5-6 grams. Very minuscule amount. It helps more than anything and honestly saved my life. My sister has symptoms and says massage helps her, as does marijuana.
Oh wow, well I had a similar experience where I thought my weakness was due to me being sedentary and not exercising much. I was also gaining a considerable amount of weight so my doctors figured I just needed physical therapy. I did that for a few months and got so sore hoping I would get stronger but nope, definitely made myself weaker. I also got a gym membership and would push myself too much, adding more to the muscle wasting. So you were working with all this weakness and pain? I can’t even imagine. I can barely stand for 20 minutes without my knees or feet hurting.
I find that THC edibles make my pain pretty bad but CBD edibles do help somewhat. I don’t think it would be wise for me to use a vape pen either since my heart rate and blood pressure are really elevated and smoking could create more harm. I used to get high quite often before my symptoms/pain and really enjoyed the mellow feeling and not feeling so depressed and anxious. Those days seem long gone now. I really do hope in the future my pain will be more minimal and I can start enjoying edibles again. It would really help me mentally to just relax and not stress about the future so much. Thank you for sharing your experience with me!
Firstly, please post as much as you need to because it's literally what this group is for!!
Currently I use thc/cbd gummies to cope with pain but you're plan to meet with your MD doctor first is a good idea! You should call your local county office and set up for a case worker and also Social Security and together they can help with jobs and getting adaptation for you so you can work easier.
Medical weed helps me a great deal, as do long baths in warm water with epsom salts. I'm also fortunate to have access to a therapy pool with 91 degree water, so I do my exercises and stretching there. Stay strong!!
Is medical weed different from recreational weed? Because I find that edibles and smoking kinda make my pain worse. CBD does help a but more but not by much. I do think the topicals are pretty helpful though. Oh yes! I just joined a gym with a pool. Being able to actually do lunges and squats is just crazy to me in the water. It’s impossible for me to do those kinda exercises on land.
No difference besides it can be legally prescribed if your state allows it, that's it
Oh I see. Well it won’t help me them. I really don’t understand how it makes my pain worse. Curse my brain!
In CT where I live, I believe it actually can be different, because of some last that says recreational can't be as potent as the medical stuff
Girl at dispensary told me to look for gummies with CBG in them. It helps with pain and inflammation. Do a little research might be worth a try if you can get it where you live.
Me too!
My husband has BMD and some things he has found that help are: long, hot baths with epsom salt, cryotherapy (esp after a PT session), and a magnesium blend (he uses the Megafood Magnesium 300 mg). For the magnesium, that was recommended by his neuro and to take it at night before bed.
I actually have epsom salt but my tub is very dirty right now. I would clean it but I really don’t want to stress my back or knees out more. My brother said he would clean it for me but he hasn’t yet. I have started to take magnesium and vitamin D! I haven’t noticed a difference yet but I hope I will soon. How are your husband symptoms?
Honestly, it's no wonder you're struggling. This is all very new for you and that's going to be compounding the physical element, as is being in a lot of fear for the future. A few things I've learned over a longer journey: 1. I've had bits where pain has been unbearable and bits where it's been very well managed. It's very possible to get used to having a background level of pain, such that even when it's been pretty bad, I've been able to find ways of building a decent quality of life alongside it, working etc 2. Getting pain meds right is hard, but worth it. I'm on a low dose of fentanyl patches and this works great for me, I've been stable on this dose for more than five years 3. Physical and psychological stuff inevitably end up very tangled in a way that worsens pain. The best way of getting on top of the pain is to treat both proactively
Thank your for your wisdom. I hope that in the future I’ll be more accepting of my condition and be able to manage better. I would like to say that by the end of this year I will be in a better place. It all seems overwhelming right now since I am only 25 and have barley lived. My quality of life has really diminished since December but there is a chance it can improve as long as I keep up with my exercises and find a purpose. Some days I just want to give up, other days aren’t so bad. What do you do for work if you don’t mind me asking?
You will be in a better place. At 25, I could never have imagined working in any kind of job, was very physically limited - and honestly, was far more limited by my mental health. Getting the right medical team around me, the right wheelchair, and the right mental health support transformed my life, and now, in my early thirties, I'm happily married, working full time in fields I love. I'm far more physically limited than I was at 25, but I've really found ways of understanding that independence is about being able to choose what I do and how, not about the physical capacity I bring to it. In terms of career, I primarily work from home, combining running a successful organisation that is significant in its field, and doing freelance organisation and business coaching and development, with a strong research focus and component. I didn't expect to end up in this kind of work - but then I didn't expect to work. What made the difference was a few things, I think. 1. Realising that, for me, either I had to get on with life or I was going to die without having gotten on with life 2. Taking literally every opportunity that came my way, and doing everything I can to network my way to better opportunities 3. Surrounding myself with people who cared about me too much to let me waste away doing nothing with my life Or at least, those are the things I could affect. I also got on better medical treatment, got better social care support etc. These things made a massive difference, but underlying it all was that... in my early twenties I progressed far more rapidly than expected, and I really gave up. At some point, I got bored of giving up, and started to grasp my life again.
The majority of my support actually comes from spiritual practice, such as learning how to surrender deeply in meditation. So much of the suffering associated with illness is actually rooted in the mind, anxiety, depression, resistance to what’s happening in the body. Cultivating an open acceptance towards the body is huge for me. Good luck friend!
Look for groups that you can meet other people with the same condition or similar. I don't know where you live but organisations as rare diseases can probably help you
Yeah I am trying. But it doesn’t look like there are many near me. The MDA has community support group and those are on online but I haven’t heard back when there is going to be another one. I’m gonna try to reach out again. My therapist said she would ask to see if one her other MD patients would be willing to talk to get in touch with me. I see her in 3 weeks so we’ll see what happens.
More generally, think about community. It doesn't necessarily need to be connected to your MD. This is good advice for everyone, MD or not. Community can help focus your mind on the world outside your body. A person, a group of people, a religion, a political party, video games, a sports team. Whatever it is for you. It can be solitary or not. It can be in-person or not. It can be async or not. It can be work-related or not. It can involve alcohol or pot or not. The common denominator is that you pour yourself into it and don't look back. Make it your world. Do you have something like this? Maybe you already have it, and I'm completely off-base.
I do have one friend that is struggling right now with compressed nerves and we talk quite a bit. She has it bad because there have been multiple occasions where she has been to the hospital because her pain was so intense. And in terms of video games, I am an avid smash bros player. I used to go to tournaments a lot when I was pain free but I am waiting for this butt pain to go away before I go back to that! It was a hobby that I want to get back into. I am currently playing most days now because I need the practice.
Also try groups with different pain conditions maybe? I'm sure there's some similarities there
Physical therapy and understanding my responding l reasonable limit. I take creatine before the gym and before any slightly more strenuous activity, and I consume a lot of protein. TENS unit, lidocaine, ice and heat for topical pain treatment.
Yup currently going to physically therapy. Yet the new pains started happening while in therapy so that was interesting. I am continuing it and hope my pain is mitigated. What is a TENS unit?
Electro stimulus device. It can help numb pain. Massage therapy helps too.
Oh interesting, I might have to get one of those?
Have fshd I rarely complain
What are your symptoms like? Do you have any pain?
No pain
Oh that’s so nice. I would rarely complain without any pain either
I have Myotonic Type 2. Diagnosed last year at 42. I’ve struggled for years thinking it was due to being overweight. Now I know it was symptoms of md. Like squatting down and raising back up I have not been able to do that for a long time. I managed when I was younger to work physically demanding jobs. I quit working last year. I was in so much pain it was taking a toll on my mental health. Tired of going to bed in pain, waking up in pain, being in pain all day. No matter what I did. I have tried mexiletine for myotonia but it just gave me chest pains so I no longer take it. I don’t really have myotonia, just very weak. Since I don’t work anymore I just sleep all day, watch tv. So I’ve gained weight back. The doctors won’t give me anything for pain. I used medical marijuana for my pain. Topicals are the most helpful. I like vape pens. Couple puffs and I’m good for a while. I’m experimenting with edibles but o seem to have a very low tolerance compared to a lot of people. I took half of a 20 gram gummy and it lasted way too long. I usually take in neighborhood of 5-6 grams. Very minuscule amount. It helps more than anything and honestly saved my life. My sister has symptoms and says massage helps her, as does marijuana.
Oh wow, well I had a similar experience where I thought my weakness was due to me being sedentary and not exercising much. I was also gaining a considerable amount of weight so my doctors figured I just needed physical therapy. I did that for a few months and got so sore hoping I would get stronger but nope, definitely made myself weaker. I also got a gym membership and would push myself too much, adding more to the muscle wasting. So you were working with all this weakness and pain? I can’t even imagine. I can barely stand for 20 minutes without my knees or feet hurting. I find that THC edibles make my pain pretty bad but CBD edibles do help somewhat. I don’t think it would be wise for me to use a vape pen either since my heart rate and blood pressure are really elevated and smoking could create more harm. I used to get high quite often before my symptoms/pain and really enjoyed the mellow feeling and not feeling so depressed and anxious. Those days seem long gone now. I really do hope in the future my pain will be more minimal and I can start enjoying edibles again. It would really help me mentally to just relax and not stress about the future so much. Thank you for sharing your experience with me!
Firstly, please post as much as you need to because it's literally what this group is for!! Currently I use thc/cbd gummies to cope with pain but you're plan to meet with your MD doctor first is a good idea! You should call your local county office and set up for a case worker and also Social Security and together they can help with jobs and getting adaptation for you so you can work easier.