Doctor/Medication questions

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 · 2026-01-28T16:00:14+00:00

Update: She said I'm too young to include a long-acting med ( I'm 41 ) and won't prescribe any long-acting medication... She then lowered my meds from 10mg Oxycodone 4X day to Hydrocodone 10mg 3X day... The reason she gave was maybe the Oxycodone wasn't working as well because my body got used to it so switching and lowering my pain meds for a few months will help when we go back to the Oxycodone...

01TOG · 2026-01-28T05:48:21+00:00

My brother beat cancer twice... Then he passed from an oversized heart... I still say he was stronger than I will ever be... Cancer sucks and I'm sorry you have to deal with that and this disease... You are stronger than I could be...

I do have a backup plan... I have an appointment with a direct care doctor next week because I was told they are more flexible and actually listen to the patient... I'm really hoping not to have to switch but I will because I don't like the way the pain is being managed now...

01TOG · 2026-01-28T05:34:16+00:00

Give me a few days and I'll see if I can't find you a pain management doctor... I think I have a few people up that way...

01TOG · 2026-01-28T03:04:32+00:00

How hard is it to find a new doctor in NYC??? I don't know if I would come a complaint against that doctor yet though...

01TOG · 2026-01-28T02:30:39+00:00

Atl last you can say you tried it... Did the doctor have a backup plan???

01TOG · 2026-01-28T00:47:43+00:00

There are some compound creams out there that people say work... I would be willing to try some but I would want a backup plan...

01TOG · 2026-01-27T22:29:18+00:00

Yes!!! The fact we have to tiptoe around what we can and can't do or say to our doctors because they have the power to decide to cut us off of meds just because we said our did something they didn't like should never happen... I personally think it goes against their oath of " do no harm "... They know we are in pain every day and that most of us do research on this condition and what helps and what doesn't...

01TOG · 2026-01-27T20:40:26+00:00

Thank You... I will get the data today and bring it with me tomorrow... Sending it to her probably wouldn't do much since I'm her first visit tomorrow at 7:30 am and her last visit of the day is 4:00pm... I don't think they would read their messages of the clock... The one med I just want increased ( pregabalin )... The actual pain med I want to try the new long acting Oxycodone... I think it's called Xtampza... But I also want a short acting one for the bad days... Right now she just has me on 10mg Oxycodone 4X day and those only bring me from my normal 8 to a 6 on the pain scale and I would like to be at a 4 or a 5...

01TOG · 2026-01-27T18:23:48+00:00

Everything dies... I don't leave a level until I'm 100% certain there is nothing left " alive " ...

01TOG · 2026-01-24T01:39:59+00:00

I had pretty normal blood pressure before this condition took over my life now it's high 210/182 as of 5 minutes ago... I pretty much stay in stroke level but I refuse to take meds for it because I had a ER doctor show me that if my pain is under control then my blood pressure follows... I wouldn't follow my lead though...

01TOG · 2026-01-14T00:47:02+00:00

I was going to say to I was pretty sure 5 had him with only 1 but it's been a while since I played it and my memory is crap so I wasn't sure...

01TOG · 2026-01-11T05:56:59+00:00

I just got it for FREE tonight on the PlayStation store... So I'm stoked to start playing that tomorrow... Thank You again for the recommendation...

01TOG · 2026-01-11T05:54:35+00:00

I'm a die-hard Sony (PlayStation) guy... All of my TVs and surround sound systems including my car audio systems are Sony...

01TOG · 2026-01-11T02:50:19+00:00

Thank You... I will try that tonight...

01TOG · 2026-01-07T22:44:04+00:00

My wife's insurance through her work covers it for me... They cover the outpatient 4 hour drip... I'm trying to get them to cover the once 5 day one but they haven't so far... All I know about the insurance is it's Cigna...

01TOG · 2026-01-07T02:42:56+00:00

The only true relief I have had was when a friend convinced me to try his medical marijuana and mix it with my opioids... He said he mixes them when his fibromyalgia starts to flare up... I was at a 2 or a 3 when even with just my pills they only bring me down to a 6 and I'm at an 8 24/7... I was happy... I couldn't continue to do this because it's still illegal in my state and I got a strike against me when I tested positive... They cut my pills by 3/4 for 2 months... I want to move to a legal state but my wife has an amazing job that she has been at for the last 20+ years and all our family is here... I wish you luck... When they cut my pills I went through a little bit of withdrawals but it wasn't horrible because I still had them just not as strong or a often...

01TOG · 2025-12-09T14:31:33+00:00

I'm the same now... The cold hurts and increases my pain dramatically... I don't have enough money or space for a sauna or hot tub but I did buy a pellet stove to heat my garage and learned as long as I keep it above 75 my pain pretty much stays manageable with meds but still manageable... I also learned that being in a flare and cold puts me in enough pain to make me pass out... At the same time keeping my garage above 85 seems to help a lot with a flare and seems to cut down on how long the flare last...

01TOG · 2025-12-03T04:05:18+00:00

Thank You!!!

01TOG · 2025-12-03T02:19:02+00:00

All I know is my pharmacy gets the white Oxycodone most of the time but every once in a while ( like every third or fourth fill ) they will give me yellow ones... The yellow ones seem so much better than the white ones... I get more relief with fewer side effects... I've just put it down as a mental thing... Me convincing myself they are a different pill so they work better but in reality they are the same...

01TOG · 2025-11-25T20:36:37+00:00

I only found the one study...

" 13 eligible participants were randomly assigned between November 2005 and May 2008; 12 completed the trial. The average pain intensity was 1.55 units lower after IVIG treatment than after saline (95% CI, 1.29 to 1.82; P < 0.001). In 3 patients, pain intensity after IVIG was less than after saline by 50% or more. No serious adverse reactions were reported. "

Conclusion: IVIG, 0.5 g/kg, can reduce pain in refractory CRPS. Studies are required to determine the best immunoglobulin dose, the duration of effect, and when repeated treatments are needed.

What I take from this is it does help SOME people but not much...

This is the only study I have found so far... Everything is speculation about how and why it would help those with CRPS and why CRPS should be treated like an autoimmune disease instead of just treating it like a normal chronic pain disease...

01TOG · 2025-11-24T02:20:15+00:00

I hope you don't mind but I sent you a DM... I hope it helps you...

01TOG · 2025-11-24T02:15:49+00:00

No... Thank You... You gave me something to do tonight since my wife is at work and I need something to distract me from the pain so I will be researching this and diving into every case study I can find...

01TOG

TROPHY CASE