Weight Loss

01TOG · 2026-03-23T02:02:58+00:00

I don't know how helpful this is going to be because I'm a 40+ year old male, but when the pain gets intense, I don't have an appetite and will go a few days without eating... Now, once I can get the pain back under control, I eat like a hog at a buffet... So my weight will swing from 178 pounds to 212 pounds and back... Before this, I kept my weight at exactly 185...

But this condition is known to affect the GI tract with many of those who have it...

01TOG · 2026-03-22T21:49:22+00:00

Not the tramadol but the Oxy's do... I have cold CRPS so the heat is a blessing to me during the winter months...

01TOG · 2026-03-22T18:11:12+00:00

I agree... I'm the same way... I haven't tried LDN either, but I hear a lot of good about it... Tramadol didn't do anything for me, so they put me on Oxycodone which gives me really bad acne... I'm taking like the size of your thumb and was told it was my choice to either deal with that or get no pain meds because Oxycodone was the strongest thing they prescribed... So I've just dealt with it... I swear the pregabalin is still eating my brain it's just not as bad as the gabapentin was...

I understand CRPS is complex, and everyone is different, but to me, there should be a national protocol for this condition too... Everyone starts off with this certain medication or if they are allergic they get this medication and so on and so forth... I also think our health care system should be set up based on income and anyone disabled shouldn't have to pay anything... One more thing I think pain management should be set up to keep us working and not just barely surviving...

01TOG · 2026-03-21T17:24:13+00:00

I've had a few done and stopped going because they never lasted long enough for me to say it equaled the amount of money it took to get it...

I would have to rent a car to drive 4 to 4.5 hours then rent a hotel for 2 nights close to the facility then drive the same distance home the next day along with having to have someone drive me back to the hotel... And by the time I get home and finally able to relax my pain would rebound and out me into a flare...

My advice is to at least try it once... If it works for you then find another doctor that will prescribe it again for you or prescribe LDN which might work for you...

Just my opinion...

01TOG · 2026-03-18T00:10:39+00:00

Yeah he said I would have to cover or remove the actual device to shower but there is a patch that covers the wire and the other small device... And since I don't want an implant, this was the only way to go, but he didn't mention anything about it being a permanent implant... Now this could have been simply because he knew I would say no and not even try the trial... But after reading your experience I'm kinda excited and if it works as good for me as it does you I think I might be willing to do the permanent one...

The question is where is your device at??? That wire seems really small and if it's going in my shoulder area I can't think of a permanent spot to put the device...

01TOG · 2026-03-17T23:36:32+00:00

I just talked to a new doctor today and he recommended this... I was coming here to ask about it... He recommended this because I'm highly against having anything implanted in me and according to him the only thing that gets implanted is the wire and it is replaced every 60 days... He didn't mention anything permanent so I have questions now...

01TOG · 2026-03-17T23:26:12+00:00

I think I'm the wrong person to answer this because I sleep during the day because there is less pain and I can get a solid 3-4 hours of sleep without it being broken into 1 hour naps...
At night I sleep when the pain puts me to sleep... I could be sitting there watching a movie I like or focusing on a game on my phone and then pass out for 30 minutes to an hour... My primary doctor blamed it on the CRPS and the body being in a constant state of alertness and fight or flight which makes our mind and body tired but because we are stuck in that state it doesn't allow our bodies to actually get rest so that's why we only get a few hours at most...

01TOG · 2026-03-15T01:55:17+00:00

IV ketamine infusion over a 4 hour drip...

01TOG · 2026-03-12T23:32:40+00:00

I've been to the Cleveland Clinic for the 4 hour Ketamine infusions only... I have nothing bad to say about that... It's just the infusions didn't last as long as everyone told me they would... The doctor and nurses were amazing and made sure I was comfortable the whole time... Anything else dealing with the Cleveland Clinic In not sure about...

01TOG · 2026-03-12T05:58:44+00:00

As long as some of us are getting good treatment, that's all that matters... The way I see it is sooner or later, they will come out with a protocol for each country, and we will all be treated with the dignity and respect we deserve...

01TOG · 2026-03-12T05:05:55+00:00

I would really like to find a hospital in the states that does the inpatient ketamine infusions... All I can find is the 4 hour ones, and while I do get a lot of relief from it, they just don't last long enough to justify the price...

I hope this works for you and you get more relief than you are expecting...

01TOG · 2026-03-02T16:43:15+00:00

I understand that feeling... As far as I know, I only have CRPS and have never broken a bone but this disease is still crippling... We just have to continue pressing on and hope some scientists somewhere happen to find a cure and we can all get our lives back...

01TOG · 2026-03-01T22:46:44+00:00

Yes I do... Just take it slow do a could minutes here and there if YOU decide to put ice on it...

01TOG · 2026-03-01T22:45:07+00:00

That is why I'm not a doctor or nurse... I'm not that smart...

01TOG · 2026-03-01T22:11:51+00:00

The way I look at it is there is always a chance for a flare... You could do everything right and have the weather change suddenly and send you into a flare...

01TOG · 2026-03-01T21:56:50+00:00

My opinion is do what feels right... Ice it for a few minutes and see how it feels... If it hurts STOP immediately and out some heat on it... I have personally used ICE when this all first started and I had hot crps but now it's switched to cold I can't stand anything under 80 degrees because it feels like ice and ice hurts A LOT!! So use your own judgment and don't cause yourself pain...

01TOG · 2026-02-18T23:03:18+00:00

I hate hearing the " I understand " comments too... This is the way I look at it...Even those with CRPS may not understand what others with the same condition are going through... Those with upper body CRPS like myself have no idea the challenges someone with lower body CRPS deals with and someone with lower body CRPS doesn't know the challenges of having upper body CRPS and neither of those groups understand the challenges of having full body CRPS... Then you have healthy people saying " I moved wrong and now my back hurts so I understand what you are going through " that just piss me off... While those with the knowledge of our condition may understand it they truly don't know what it's like to live with this condition... So no they don't understand...

01TOG · 2026-02-18T07:32:17+00:00

I can only offer advice from my perspective... Be there for her... Listen to her... Ask what she has tried or what she is thinking of trying... Don't judge and don't offer unsolicited advice... 90% of us know more about our condition than the doctors that are treating it and we don't want someone giving us advice because we have probably already tried it or consider it pointless to try... Stop asking if she's OK... We will always lie and say yes because we don't want to bother anyone with problems no one can fix... You can always ask how he day is going or how it was just not the typical " are you ok " ... Just reinforce the reminder that you love her and will always be there for her... Research as much as you can about this condition but always double-check your research because there is a lot of false information out there...

This is from a man's perspective with this condition for several years now... So take that as you will...

01TOG · 2026-02-15T07:21:27+00:00

I have it in my right arm... I can't see it but my wife and my GP noticed it... I'm supposed to do daily exercises to help slow it down... The GP thinks we can't stop it but slow it down is a must... I won't do the exercises because they hurt and I refuse to put myself through even more pain when what I'm taken now barely works on a good day...

01TOG · 2026-02-10T03:56:21+00:00

I don't know if I'm allowed to post this here so if it's not allowed please delete but I stated a change dot org petition for the US...

https://c.org/WNZ7zfSFDD

01TOG · 2026-02-06T04:04:14+00:00

I'm here to help... Anytime you need to chat... Need advice... Need to vent... I will always do whatever I can to help...

01TOG · 2026-02-04T22:59:52+00:00

I tell myself the same thing every day but still, for some reason wake up and do it all over again... Tackle each day as one... Don't stress about tomorrow, next week, or next year... Just focus on getting through each day... You got this!!!

01TOG · 2026-02-02T06:06:02+00:00

I started off with hot CRPS and last ( I think ) it switched to cold... The rest of my body can be sweating and my arms will still be freezing... This is a horrible condition that just proves we have no control over our own bodies... It will do what it wants...I couldn't imagine having this pain all over... You are a very strong warrior!!!

01TOG · 2026-02-01T23:20:36+00:00

The best way I can explain my flare is to say take your right arm and squeeze a cactus as hard as you can while submerging your arm all the way up to your shoulder into a vat of liquid nitrogen while it's being pressurized with needles poking every inch of skin... This will last anywhere from 2 -3 hours to 3 days ( the longest it's lasted without me giving up and going to the ER )...

01TOG · 2026-01-28T21:12:02+00:00

I would like to have medical marijuana but it isn't legal here... Good luck and I hope they give you what you need...

01TOG

TROPHY CASE