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.
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 also meant the medications you have tried not just pain meds. Put those in order.
You didn't answer this.5. Is there any reason you can't move to a warm climate?
You didn't answer this.
What are your symptom like in the summer months?
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 understand, without my records in hand it's difficult to remember all of the treatments over a 20 year period and over 15 doctorsThis 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.
She was adamant he needs to move to a warm climate first and foremost.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.
Have you looked into the lower priced generic from places like Iron Dragon? Iron-Dragon.com.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
No, but I will now THANK YOUHave you looked into the lower priced generic from places like Iron Dragon? Iron-Dragon.com.
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.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 get stuff from alldaychemist.com give them a look also.No, but I will now THANK YOU
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?
No, but I will now THANK YOU
I ordered something once from Iron Dragon for an ex (read about it on the OG). He used it once, it worked, he still sucked. Turns out his issue was something entirely different. Asshole.I get stuff from alldaychemist.com give them a look also.
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 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 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 think you have to find the chemical name to get it. It’s a liquid spray.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 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.
Ok I get but . . .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.
Fucking awful. I can almost feel your pain. I hope we can help find you someone. It pains me to have to ask this. Are you sure you aren't just beating off with no lube too much? Don't forget to leave me a city.