General Pain Management

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B.D.

Well-Known Member
Nov 8, 2018
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My wife suffers from a version of Raynaud's, milder than the OP's, but extremely painful, and winters are hell on her, even in southern commiefornia.

One thing she finds works is a daily tonic of L-citruline (1-2 grams), betaine (1 gram) and beet root powder, 1-2 grams. You can get them all in bulk from Amazon for around 40-50 dollars, enough to last you 9 months to a year.

Also, for acute flares, and I shit you not about this...25mg of viagra. Knocks down an acute flare in 10-20 minutes. Neither of the things help with the pain, and since she's got severe, persistent asthma, almost every pain medication would make her breathing worse.

I know the misery you're in daily, I hope something I suggested helps with the symptoms for you.
 

RussfromNH

Live Free or Die
Dec 12, 2018
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She had a million questions.
First thing she asked was where you live I assumed NH. He needs to move where it's warm. She had a professor in med school that moved down here as his wife has it. She said cold weather is really bad for this. She harped on the cold weather.

1. Is it worse in the winter?
2. Does it also effect your toes?
3. Besides your liver have any other organs been involved? She said this is really bad on organs.
4. Do you also have mouth opening issues?
5. Is there any reason you can't move to a warm climate?
6. What do you do for work?

She said it's a really hard and terrible disease to manage. She isn't surprised all the things they tried with you. She went on about other things but from your post I told her it seemed your main focus was the pain in your fingers. She was concerned on the overall picture which is organ failure. As I suspected this usually falls under RA docs. ID gets them when the skin falls off and the fingers are infected and she seems them for the skin related stuff but RA's are the quarterbacks of this.

1. Is it worse in the winter?

Yes. I’m an outdoors type of person as well. I hunt, fish/ice fish, snowmobile during the winter. I own two different types of battery operated heated clothing to be able to enjoy the outdoors. Even in the summer I dress like its fall, it can be 90deg out and I’m still wearing a hoodie.


2. Does it also effect your toes?


Not at the same level as my hands. They turn purple when I’m cold but return to normal as soon as I get warm. My hands do not.


3. Besides your liver have any other organs been involved? She said this is really bad on organs.

Yes. I have my major organs checked via ultra sound every 2 years. They’ve found forms of damaged Telangiectasia on just about every organ. Luckily they aren’t bleeding or seeping blood.


4. Do you also have mouth opening issues?

No


5. Is there any reason you can't move to a warm climate?


6. What do you do for work?

I recently changed jobs, I’ve been a manufacturing engineer working in electronic manufacturing for a bit over 27 years. Now I’m a corporate trainer teaching people how to program/operate/repair various types of equipment and software, less wear and tear on my hands.


I know about the organ failure, not much I can do about it though. I have changed a lot of things over the years to help, I don't drink or smoke butts, I exercise regularly, try to eat healthy and as mentioned i have the ultrasound try to catch any organ issues.
 

Splinty

Shake 'em off
Admin
Dec 31, 2014
44,116
91,095
I also meant the medications you have tried not just pain meds. Put those in order.
This is good advice. I happily take on patients with a LOT of comorbidities including some that "nothing works". I understand the frustration, but "nothing works" gives me no where to start to try. Ranking your interventions to organize your history is really helpful in a doc looking for future interventions, including continue the same and adding adjunct therapies., that will actually help you.
 

RussfromNH

Live Free or Die
Dec 12, 2018
2,540
4,195
You didn't answer this.
What are your symptom like in the summer months?

I moved to a small town outside of Ocala FL for almost a year and a half. It didn’t do much to decrease the symptoms or decrease the frequency of the finger ulcers. I’m so sensitive to the cold all of the air conditioners still triggered things. I would sit outside in the heat while everyone was in the AC. Holding a cold drink will trigger issues. The warm climate didn't help as much as you would thing.


The last 2 summers seem worse than before, 3 ulcers that year and last year another 4, In the past I never had issues during the warmer months. It seems to be getting worse with age

Cold is the biggest trigger but stress triggers as well.
 

RussfromNH

Live Free or Die
Dec 12, 2018
2,540
4,195
My wife suffers from a version of Raynaud's, milder than the OP's, but extremely painful, and winters are hell on her, even in southern commiefornia.

One thing she finds works is a daily tonic of L-citruline (1-2 grams), betaine (1 gram) and beet root powder, 1-2 grams. You can get them all in bulk from Amazon for around 40-50 dollars, enough to last you 9 months to a year.

Also, for acute flares, and I shit you not about this...25mg of viagra. Knocks down an acute flare in 10-20 minutes. Neither of the things help with the pain, and since she's got severe, persistent asthma, almost every pain medication would make her breathing worse.

I know the misery you're in daily, I hope something I suggested helps with the symptoms for you.

I will look into the tonic THANK YOU

Dr tried the viagra for me as well with decent results but at $130 for 3, 25mg pills is way more than I can afford
 

RussfromNH

Live Free or Die
Dec 12, 2018
2,540
4,195
This is good advice. I happily take on patients with a LOT of comorbidities including some that "nothing works". I understand the frustration, but "nothing works" gives me no where to start to try. Ranking your interventions to organize your history is really helpful in a doc looking for future interventions, including continue the same and adding adjunct therapies., that will actually help you.
I understand, without my records in hand it's difficult to remember all of the treatments over a 20 year period and over 15 doctors

Every time I move or go to a new dr I do take all med records with me
 

Never_Rolled

First 10,000
Dec 17, 2018
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You didn't answer this.
What are your symptom like in the summer months?
She was adamant he needs to move to a warm climate first and foremost.

OP what type of doc are you seeing? As I stated this falls under RA. I would look for a well trained RA doc in your area until you move to Fl. or Texas very soon. :)
 

RussfromNH

Live Free or Die
Dec 12, 2018
2,540
4,195
She was adamant he needs to move to a warm climate first and foremost.

OP what type of doc are you seeing? As I stated this falls under RA. I would look for a well trained RA doc in your area until you move to Fl. or Texas very soon. :)

Just my primary care.
I've given up with treatments, I've been told over and over "there is nothing more I can do" then I am referred to another dr just to hear the same thing again in another year.
 

gangsterkathryn

저승사자
Oct 20, 2015
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I will look into the tonic THANK YOU

Dr tried the viagra for me as well with decent results but at $130 for 3, 25mg pills is way more than I can afford
Have you looked into the lower priced generic from places like Iron Dragon? Iron-Dragon.com.
 

Never_Rolled

First 10,000
Dec 17, 2018
5,798
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Just my primary care.
I've given up with treatments, I've been told over and over "there is nothing more I can do" then I am referred to another dr just to hear the same thing again in another year.
I told her you sounded pretty disgusted after 20 years also. Seriously think about moving. That might be the biggest relief. We have a great RA group down here. They are in the latest trials so they are up on the latest and greatest. We flew a girl down from Chicago with basically no insurance to see them. They changed her life. Different issues but she was able to go home and find docs up there to continue her treatment.

GF told me some patients have to wear gloves just open the fridge. You're a tough guy. Did you get any help yesterday?
 

Splinty

Shake 'em off
Admin
Dec 31, 2014
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Just my primary care.
I've given up with treatments, I've been told over and over "there is nothing more I can do" then I am referred to another dr just to hear the same thing again in another year.

Thei advice you are getting in here is really good. you need a rheumatologist and the entire world of both dermatology and rheumatology have been moving at a lightning speed in the last 5 years due to biologics.
 

RussfromNH

Live Free or Die
Dec 12, 2018
2,540
4,195
I told her you sounded pretty disgusted after 20 years also. Seriously think about moving. That might be the biggest relief. We have a great RA group down here. They are in the latest trials so they are up on the latest and greatest. We flew a girl down from Chicago with basically no insurance to see them. They changed her life. Different issues but she was able to go home and find docs up there to continue her treatment.

GF told me some patients have to wear gloves just open the fridge. You're a tough guy. Did you get any help yesterday?



Norvasc – they think I have high bp but don’t they realize extreme pain jacks up your BP up

Keflex – for infection

Tramadol – 50 mg 10 pills, for pain took 1 last night before bed, useless so I took another at 2am still tossed and turned till 5 then just got up and went to work. I’m starting to nod off while Im, driving because I cant fucking sleep.

Moving to another climate isn’t that easy. Like I explained I did try for a year and a half and it did not help. AC everywhere, holding a cold drink sets it off, just getting a chill where it triggers goose bumps sets it off, stress sets it off as well

When I first started treatments in the early 90’s there was not much information regarding treatment, shit they didn’t know what category to classify it under and that too has changed over the years as they learn more

I’ve sat in a freezing cold rooms with my hands soaking in warm/hot water with the attempt to “trick” my nervous system kind of a “Pavlov theory” approach

When my fingers tips rot it’s the pad on my finger tips that turn gangrene and rot until they fall off. The process takes a long time as the center of the pad stays connected, kind of like a mushroom stem.

One Dr at Layhe clinic, Internal Med dr didn’t believe the big black bump on the tip of my finger was my finger pad but instead he thought it was just a scab. He had me stand behind him while he took my right hand under his right arm and grabbed my wrist, he then clipped a pair of forcipes and tried to rip the “scab off” it hurt so fucking bad reflexively I grabbed him by the hair and dragged him to the ground and began screaming at the fuckin g dick head.

Dr’s have created other medical conditions with me, all of their treatments toxified my liver.
Based on my experiences alone, it's difficult to trust Dr's most are in over their heads and use software to tell them what to prescribe others are like bad mechanics and fling meds hoping to get it right.

I have had more times where I get excited with a new Dr but eventually i end up in the same place, disappointed with 0 improvements

I have been to 2 RA dr’s years ago, I don’t remember their treatments but I remember one trying to talk me into disability.

I have yet to meet a Dr with the ambition or drive to help at least back then they would give me pain meds but now they can't even do that.
 

Never_Rolled

First 10,000
Dec 17, 2018
5,798
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Thei advice you are getting in here is really good. you need a rheumatologist and the entire world of both dermatology and rheumatology have been moving at a lightning speed in the last 5 years due to biologics.
I ordered something once from Iron Dragon for an ex (read about it on the Grindr). He used it once, it worked, he still sucked. Turns out his issue was something entirely different. Asshole.
I checked it out. Alldaychemist is a pharmacy. The place you sent him I didn't see dick pills. It's sarms and other experimental stuff. Alldaychemist is what he needs should he go that route.
 

gangsterkathryn

저승사자
Oct 20, 2015
17,319
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I checked it out. Alldaychemist is a pharmacy. The place you sent him I didn't see dick pills. It's sarms and other experimental stuff. Alldaychemist is what he needs should he go that route.
I think you have to find the chemical name to get it. It’s a liquid spray.
 

RussfromNH

Live Free or Die
Dec 12, 2018
2,540
4,195
I checked it out. Alldaychemist is a pharmacy. The place you sent him I didn't see dick pills. It's sarms and other experimental stuff. Alldaychemist is what he needs should he go that route.

I will check them out THANK YOU
 

Never_Rolled

First 10,000
Dec 17, 2018
5,798
6,349
Norvasc – they think I have high bp but don’t they realize extreme pain jacks up your BP up

Keflex – for infection

Tramadol – 50 mg 10 pills, for pain took 1 last night before bed, useless so I took another at 2am still tossed and turned till 5 then just got up and went to work. I’m starting to nod off while Im, driving because I cant fucking sleep.

Moving to another climate isn’t that easy. Like I explained I did try for a year and a half and it did not help. AC everywhere, holding a cold drink sets it off, just getting a chill where it triggers goose bumps sets it off, stress sets it off as well

When I first started treatments in the early 90’s there was not much information regarding treatment, shit they didn’t know what category to classify it under and that too has changed over the years as they learn more

I’ve sat in a freezing cold rooms with my hands soaking in warm/hot water with the attempt to “trick” my nervous system kind of a “Pavlov theory” approach

When my fingers tips rot it’s the pad on my finger tips that turn gangrene and rot until they fall off. The process takes a long time as the center of the pad stays connected, kind of like a mushroom stem.

One Dr at Layhe clinic, Internal Med dr didn’t believe the big black bump on the tip of my finger was my finger pad but instead he thought it was just a scab. He had me stand behind him while he took my right hand under his right arm and grabbed my wrist, he then clipped a pair of forcipes and tried to rip the “scab off” it hurt so fucking bad reflexively I grabbed him by the hair and dragged him to the ground and began screaming at the fuckin g dick head.

Dr’s have created other medical conditions with me, all of their treatments toxified my liver.
Based on my experiences alone, it's difficult to trust Dr's most are in over their heads and use software to tell them what to prescribe others are like bad mechanics and fling meds hoping to get it right.

I have had more times where I get excited with a new Dr but eventually i end up in the same place, disappointed with 0 improvements

I have been to 2 RA dr’s years ago, I don’t remember their treatments but I remember one trying to talk me into disability.

I have yet to meet a Dr with the ambition or drive to help at least back then they would give me pain meds but now they can't even do that.
Ok I get but . . .

As Splinty @Splinty pointed out there are many changes in Rheumatology. I hear your frustration but you also aren't doing yourself any favors. It's like you are going to Applebee's for Sushi instead of finding a Sushi place. This isn't what IM docs do. IM docs are the nerdy thinkers. They look at all your stats, drugs, what other specialties are doing and put it all together and make sure there are no bad interactions. My GF calls them the quarterbacks of medicine. You don't see them for what you have. Patients often don't research who to see for what they have or they don't know what they have and start off in the wrong place. Some docs will use generic methods if it's out of their field. A good doc will turf someone to the correct person. Not all are like that.

You need to find a well trained RA period end of story for any hope of relief if it's out there. This is step number one. These are the people who have the training and most knowledge in exactly what you have. Forget what happened 20 years ago. Start fresh and be hopeful. So many new advances. Staying in cold weather is also one of the worse things with what you have. She wouldn't have said that if it didn't matter. When a professor from Mayo moves down here because his wife has what you have that should tell you something. If you give me your city I will have a list of names and places by tonight. As I pointed out teaching centers usually deal with tough cases that aren't a good fit for private practice.


The girl I was speaking of also went to docs other than RA docs. She was seeing the wrong people and she was misdiagnosed. We got her in to see the right people. It made all difference in her life. My GF gets asked internal medicine questions all day. Sure she trained years ago but that isn't what she does. Her standard line is "I'm an outside doctor you need an inside doctor".
 

RussfromNH

Live Free or Die
Dec 12, 2018
2,540
4,195
Hudson, NH i'm close to the MA border if i need to

My insurance is starting to use the "preexisting condition" to fight paying for any treatments related to this


LMAO, with my condition I've learned the fine art of the footjob but due to my lack of flexibility i now need a hip replacement