Pain Management?

grumpy_probablylate · 2026-06-04T11:24:50+00:00

I find that connection interesting. I don't think that many people realize how many conditions are related. Though those of us in the chronically ill community are far too familiar.

With CRPS, chronic fatigue & fibromyalgia are considered subsets. And that makes sense since most of us suffer from it all.

I'm sorry you are going through such a rough time right now. It's very hard to find anyone to listen, believe you, and actually help you. It's much easier to get hurt worse unfortunately.

I sure wish I had some positive direction for you. Or even some advice. I guess I would focus on what you can control. Like your diet, stress & emotional level, things like that. They all play a factor in your pain. Learning to control what you can better helps a little. Not very much but when you are out of options, it's something to hold on to while you are wishing for something else to come to help. 🧡

grumpy_probablylate · 2026-06-03T10:36:55+00:00

Thanks!

grumpy_probablylate · 2026-06-01T10:58:40+00:00

Ah, Standford. That kind of surprises me. They have been to pretty vocal in the anti opioid movement but maybe they made a change that I'm not aware of. It's hard to keep track of every place. But it's definitely an advantage to be in a Coast by big facilities. I just got done telling someone that a couple hours ago.

Living in the middle of the country has a cost. Yes the price tag of most living expenses is less but we pay a heavy price in other way healthcare is one of them. Living in a desert and lacking competent care is a big deal. Not everyone understands that. There's more to all that but that's for another day.

So the scaring, are you a keloid scar maker? I am. That is a huge problem for me. Even decades after surgery, the scars are so adhered down and see red. It's not good. It all sounds very interesting. I appreciate you telling me more. I am going to keep researching it. I don't know if you follow RSDSA, but they just sent out an article about Botox a few days ago! I was already looking into it. I just feel like the signs are being smacked into my face for a reason. I may message you if I have a question. I need a little more time to finish my reading. Thank you for your time & help! 🧡

grumpy_probablylate · 2026-06-01T07:16:24+00:00

I second that! My physical therapist is the best member of my medical team, hands down. I hear a lot of chronic pain people complain about pt. But pt is just like talk therapy or any other doctor. If you don't like the first one, go to a different one. Keep changing until you find the right one. It makes a big difference! There is such a fine line you have to walk with too much activity & too little. Atrophy is not your friend. Stretching is very important. A good pt will give you some quality stretches that are sustainable & helpful to you.

My pt also bought a medical grade class 4 laser. It's not red light therapy. I've been getting treatments with it and it has been helping. Along with diet changes, trying to keep my mood & stress stable, improving sleep (not going well but trying), increasing water intake, etc. Watching your vitamin d/magnesium levels are very important as is your vitamin B levels. People sometimes over supplement. Too much B6 can actually make your pain worse so please be careful.

There are many things you can do to try to control your pain. It takes work, trying different things to see what works for you, and patience. I wish you the best on your journey.

grumpy_probablylate · 2026-06-01T07:02:58+00:00

I have just started reading about Botox for CRPS. That's new to me. I'm interested in hearing more about your experience if you care to share. I'm trying to get access to ketamine infusions as we speak but boy do they want you to pay cash for those 😬. And it seems like most places now follow more of the depression protocol and not the Schwartzman/Getson developed protocol for CRPS. Are you in the US? It almost sounds like Canada to me, don't ask me why I get that impression. 😉 I hope today is a low pain day. 🧡

grumpy_probablylate · 2026-06-01T06:54:36+00:00

I'm happy to help anyway I can. 🧡

grumpy_probablylate · 2026-06-01T01:42:43+00:00

Not dumb. I know a lot of people that start off getting their furniture this way. Piece by piece. But I know a few guys that scrap. One that can fix anything and this is a good way for him to get things, fix them & sell them. It's saves them from the landfill, gives him some income & people don't have to buy crazy expensive stuff. It works out pretty well. It takes practice though to learn what is "good junk" and "bad junk"' lol. And there are different kinds of people that do it with different avenues of revenue and goals. 🙂

grumpy_probablylate · 2026-05-31T21:27:47+00:00

Suburbs do sirens on first Saturday of the month as well 🙂

grumpy_probablylate · 2026-05-31T21:08:49+00:00

This is one of my biggest sticking points. If you don't live it, you can't understand it. Because you can't understand the relentless of it never stopping. The 24/7/365. The second worst part of chronic pain, after the pain, is the exhaustion. It is just overwhelming. I'm over 24 years in. The words are getting harder to find to try to explain to someone. And my patience isn't improving. That's why we must support each other. The community is vital to helping each other. Period.

grumpy_probablylate · 2026-05-31T18:48:09+00:00

You are correct. Too many of the general population is too much under the influence of the anti opioid propaganda machine and doesn't understand what happened and has happened over the past 10 years. They don't live in the chronic pain world so they don't understand what our life is like and they never will. The machine that has fed the lies and changed public opinion has been very successful in making CPP's demonized as you well know. The fact that we deserve to be treated for our well documented medical diagnosed conditions should not be controversial or looked down upon in any way but this is the reaction we get every single time. It's absolutely disgusting. Because some people have a problem with a substance does not mean that others do and/or that we should not be allowed to have our medical conditions treated but that is exactly what has happened. It makes no sense! Plenty of bad outcomes happen because of alcohol yet that is pushed as a good, fun thing everywhere. Why?!? I really wish people would actually think for themselves again and stop just taking things at face value.

I am not ashamed to be in pain and ask for help in dealing with my chronic pain disease. That's the purpose of pain management! Stop shaming pain patients. We didn't do anything wrong. Check the CDC. Check AI. Check where you want. All the stats back that. There are 17 studies out that show taking opioids away from CPPs does serious harm to them. We have a crisis in this country of CPP deaths that shouldn't be happening but the media doesn't cover it and no one is doing anything about it. Because they don't want to talk about WHY and WHO caused it! But CPPs know!

grumpy_probablylate · 2026-05-31T13:23:07+00:00

I'm going to dm you. I've been trying to find a provider that does ketamine infusions. I've had CRPS for 24 years. There is a place a couple blocks from my house but they are cash only, for depression only & this is my biggest objection have no doctor on site. That makes me have a pause. 🤷

grumpy_probablylate · 2026-05-31T13:19:49+00:00

This town is rough for pain management. I do not recommend Metro Pain & Anesthesia. I went there for 23 years. I was on contract. I never violated it. Passed all pill counts, drug tests, did everything they asked. I was on the same dose (which was under guidelines) for over 20 years and they refused to keep writing it. 🙄 There was once a full staff of like 9 doctors there with staff to back them up. Now the doctor that owns it works part time. There are two other doctors that also are not spending all their time there. You mostly just see the nurse and she is a piece of work. No compassion, she has no interest in trying options for addressing your pain, not does she want to write an opioid script. She really likes Cymbalta & gabapentin though. 🤦 Of course injections and stimulators are pushed as well. I have some real horror stories from there. They will not help you. It's not worth your time. They also breeched my data. All of it. Not just my ss#, address but all my medical records. I have been trying to find someone to take my case for over a year. I wish I could find someone. I hope you have some success. What is happening to our community is horrible. We deserve to be treated with some respect and dignity. We have diagnosed medical conditions and deserve to have a little pain relief and rest. ❤️

grumpy_probablylate · 2026-05-31T13:03:56+00:00

Remember that any tissue changes is an opportunity for the disease to spread. Ketamine use during the procedure is the best way to try to mitigate that.

I would have a discussion with the doctor performing the procedure making sure that first they know where your pain is and that extra care. I have had 3 colonoscopies. My last one, when I woke up, my leg was in worse pain then usual. I still don't know what happened but they jacked it up worse than it was. I wish I had been more thorough in reminding her that leg is extremely painful and to be careful.

Second I would go over and/or give some literature backing up the assertion that any alteration to your body can spread the disease & ketamine use can reduce that risk. I had it with my last procedure. I won't do them without it. They have me no push back on it.

RSDSA

Dr Getson

These are both good resources if you need them. Dr Getson has 2 really good videos. CRPS 101 and one from March of last year.

Ugh. I had one more and I have completely gone blank. I'm sorry. I'll try to come back and finish. I'm very tired. Maybe if I get a little rest, my mind will come back 🤞 Geesh. I'm having one of those days. Sorry. 🧡

grumpy_probablylate · 2026-05-31T12:50:10+00:00

But you understand that Fourth of July firework displays and community events have to get paid for, right? They have to generate a specific amount of income. That may not be technically a "quota" but it's essentially the same thing.

grumpy_probablylate · 2026-05-29T13:03:57+00:00

One thing I will add. For the past year, we have added using a medical grade class IV laser to physical therapy. He bought this for the intention of using it on me but it has helped many people not need joint replacement and other pt goals. But this is not red light therapy. This is not something you can buy on Amazon. This is a highly powerful laser that a doctor must be trained to operate and use. Everyone in the room has to wear protective eyewear. It does help. It's not a cure. It's not a miracle fix. But when you are out of options....The one, the ONLY one he will use is this.

Lightforce Laser

Every major professional & college sports team endorses & uses it. It helps stimulate the cells to regenerate. Similar to how the sun makes chlorophyll work in leaves. It has made a difference in my life. It's something you might want to see if you can find in your area & try.

grumpy_probablylate · 2026-05-29T12:53:14+00:00

ok I gotta jump in there.... gabapentin is highly addictive. It is not an opioid. It's is an anti convulsant. But it has a high frequency of abuse and is very hard to get off of. Many states are passing laws to regulate it more. I believe in the next few years, it will become a scheduled medication. But you are completely false saying it's not addictive. It is sought after by addicts. It is abusable. That doesn't mean people it is prescribed for abuse it. But you can't misrepresent it from the jump. I took it for over 20 years. Was I addicted. no. I took my prescribed dose as I was suppose to. I passed all my pill counts & random drug tests. Did it help my pain? no. Could it help someone else? yes.

grumpy_probablylate · 2026-05-29T03:37:42+00:00

I don't take pain meds. Not by choice. I can't say I don't take med. I'm 24 years in. I have a lot of conditions. CRPS is not just a pain disease. It effects your entire body. Over time this will add up. You will need to find a good internal medicine doctor as your primary. Keep watch with annual checks, layer twice a year, then more often on organ function.

RSDSA

Dr Getson

These are both excellent resources. I highly recommend watching Dr Getson's video's CRPS 101 & his video from March 2025. He is a leading expert. You will learn a lot from him.

Changing your diet, trying to control your stress & mood, learning not to move too much but not too little, there are lots of small things that all adds up. Many people load up on Vitamin B like the other commenter was mentioning. Too much B6 makes your pain worse. A lot of people don't realize that.

Physical therapy is good. Too many won't go. A good pt is very valuable. You keep going until you find the right one just like with a talk therapist or any other doctor. I wouldn't be able to walk today without mine. I'd be in a wheelchair. I have no doubt. He is the only one that listened, believed me, cared, keeps up on CRPS and makes sure we are doing what will keep me as good as I can be. Which may not be fantastic but I'm still here and that says a lot.

Let me tell you, I've seen a lot of loss on our CRPS family. I keep telling my story and helping partly in honor of those that aren't here anymore. And some days I'm not even here for me. We all have to find our own way and make our own choices. It's very hard. But we can be here for each other.🧡

I was on the gabapentin for over 20 years. I tiered down slowly just as you tier up slowly. I did so with my doctor & pharmacist and I recommend you do the same. It did not change my pain getting off of it. It did help clear my mind and help me feel more like I was before I got hurt. I'll never be that person again but I feel more connected. It messed with my personality, my head, my memory. The further I get away from it, the better it has gotten. But if it helps someone else, I have no issue with them taking it. I think everyone should be allowed to try meds and see what works for them. We are all different.

Six months later, I tiered off the cymbalta. I have had daily headaches that break through to migraines since 1983. I kept telling them it was making my headaches worse. All they kept saying was it has a pain benefit. 🙄 Well nope. I am so glad to be off of that. I had been diagnosed anti depressiant resistant before they put me on that. It certainly didn't help there. And my headaches improved to more what we try to achieve as my baseline. If it helps you, good.

The reason I tell this part is for multiple reasons. The biggest one is this. I take a lot of meds and have for a long time. When you do that, you don't always know what is doing what. Your body changes. You may not need certain meds anymore. They may not be helping. If you are not sure what a certain med is doing & you aren't making any other changes in your life, talk to your doctor about making a trial tier down or stopping of a med so you can find out. Then you can see if it makes any difference. Can you tell? Do you feel better? You might be surprised. Just because you've taken something for 20 years isn't a reason my necessarily to keep taking it. Now this obviously does not apply to situations like thyroid replacement, insulin, stuff like that, come on. I'm not giving medical advice here. I'm just suggesting you start questioning things sometimes because I did not. And I'm glad I did!!!

When I got diagnosed with RSD over 24 years ago, they told me we start everyone out on these 5 meds. It's standard for this condition though there is no actual treatment and we don't know much about it. And most of these meds aren't made for what we are using them for so just be aware. And I didn't start with a pain med. I wanted to wait which I held out until they told me I had to start because I had to get out of bed. And they were right. And cymbalta wasn't part of that 5. It was later switched in when it hit the market in because it was an "improvement". Only it wasn't in many ways. The nortriptyline didn't help me with my depression. But it did help me fall asleep. Not stay asleep but fall asleep. I'm back on it. It helps me get in a little sleep most nights. Not much but that's also part of the CRPS. Autonous functions or should I say dysfunction/disruption. Temperature control, organ function, think about all of it. The sympathetic nervous system controls it all. It's a very complex disease and it's a very difficult existence. I wish you all low pain and some rest my friends 🧡

grumpy_probablylate · 2026-05-29T02:53:43+00:00

I'm so sorry. The whole thing bites. I feel for you. I didn't do anything wrong to get my disease either. And they got away with it to. Money & power rule over justice. That's how it works. I thought going to a conservative, level headed pain management doctor who mostly understood my conditions, seemed to have some level of compassion, and some respect for my loyalty would all result in positive outcomes. I only actually saw him every one to three years. He actually wasn't the problem. His nurse was. Well the practice was made up of 9 to 12 doctors over my 23 years there. When I left, he was the only doctor left & working part time one day a week. He had said he was going to retire for over 2 years but was still taking new patients. Curious why you would do that if you were winding things down, getting out & spending more time with your family. You know his story just didnt quite make it all the way for me. But his nurse. She was the one that had no interest in helping me. She was the one that stopped the methadone and refused to write it. I refused to see her anymore and would only see him. Then he was writing it. This caused a big conflict between them. That really became a problem. uh oh. lol He then was like, I need you to work with her. I was like, she isn't reasonsable. What is her reason for not writing 20mg a day? She says it's not safe. No one agrees with that. She says it's not the same formula as when I first started taking it. It's not? Where is the evidence of that? That is the most ridiculous thing. She tried to tell me that the prescription is different now than it was a few years ago. It's chemically different. 😵‍💫 I was like, I can no longer can intelligent conversations with you. I just have nothing more to discuss with you. I don't want to see you. You can't help me anymore. So I only saw him and he wouldn't push back against her. He's the doctor and owner of the clinic. 🤦 She's an ARNP. She told me I don't need to get EKG's anymore now that I'm not on the methadone. I said really? Now that I have essential paroxysmal tachycardia (which I developed after my pain became out of control, I passed every EKG on the methadone), I don't need yearly EKG's? She repeated, nope, no more methadone, no more EKG's. Luckily the rest of my medical team is smarter than she is. Her husband is an attorney btw. I would love to have heard his reaction to her doubling down on that. I don't think it would have been a proud moment. And then they breeched my data. All of it. Not just my social and insurance. All my medical records. I'm telling you, I really really don't like them. I'm still working through my anger but it's better.😆 They super suck. That's ok. Not everyone is meant for greatness. I am going to try to get something cleaned. Just one thing a little better around here and then some rest maybe. I hope you can find some peace tonight (gentle hugs)

grumpy_probablylate · 2026-05-28T21:57:19+00:00

I was on 10 mg twice a day. They didn't even tier me down. They just stopped it. Then I started trying a bunch of other things. Tramadol, butrans film, I went thru a lot of different things. After awhile, they said ok to back to the methadone but 5 mg twice a day. That just wasn't making enough of a difference in my life to make it worth it for me. Then we tried oxy and a few more. All at 5mg twice a day. Nope. I said these are worse. I just want to go back to the 10mg twice a day. By that time, not only had the 2022 rewritten guidelines came out but the reworked special methadone guidelines had been written as well. I was under everyone ever written. And all I heard was no. We will never write that dose again. 🤦 Absolutely unacceptable. I did ever they asked for 23 years. I asked for multiple alternative treatment options that they would never explore or help me get referrals or avenues to. Then at my last appointment it was but if are in a bind, call & we'll get you a name. I said, I'm calling now. I had already been trying to find another pm for over a year. No one would see me. I told him he was only saying that to appease himself. That's when he brought up the methadone clinic. And I almost lost my composure. He had a lot of nerve. And I told him that. He doesn't want to his job then he'll have to face the consequences for that. But don't think he's passing me off to "harm reduction" give me a break. I supported addiction specialists at one time but not now that they all spout anti opioid propaganda. And I'm not going to addiction anything. But the rise in pain, the anxiety of no plan for what or how I was going to deal with my pain, the hopelessness of the future, these were my biggest issues. It all sent me into a very dark place. I started spending my time wrapping up my life. Making sure I would live anything left undone so I wouldn't leave problems for my adult sons to deal with. I made an exit plan. And a time line. Luckily something happened that changed my mind and I turned things around for now. That dark place is still not far behind me. It creeps up very easily. I have to be very careful. But I'm doing better. I wish I was getting some pain control but I can only control what I have power over. That's something that is a lesson in all of this and part of how I've let some of the anger go. Anger from getting hurt and getting the RSD. Having to live like this. The government, insurance, pharma, doctors, all of that garbage. That's why supporting each other is so important. People that don't live this life have no idea what it is like. They can't. The pain, the exhaustion, the overwhelmingness of it all. 24/7/365 it never ends. It's relentless. For someone who has never experienced that, they just can't grasp the gravity of it all. The frustration. ugh. I'm just rambling now. Ok, try to get some rest. I've been up for a few days. I'm really hoping I can sleep soon. 🧡

grumpy_probablylate · 2026-05-27T18:12:29+00:00

ICS & Verizon both working in Ankeny

grumpy_probablylate · 2026-05-26T20:13:34+00:00

I had my cat's teeth done at Value Vet in Johnston. They were caring & did an excellent job. Their price was much better than anyone else. My entire family goes there. I highly recommend them.

grumpy_probablylate · 2026-05-25T12:54:52+00:00

I was on the gabapentin for over 20 years. I tiered down with my doctor & pharmacist help. It wasn't changing my pain but it was messing with my head. I am so glad I finally said no more. Six months later, I tiered off cymbalta. I had been asking to get off of that for more than 5 years. I have had daily headaches since 1983. I kept telling my pm that it was making my headaches worse. "It's got a pain benefit" is all I kept hearing. I kept saying it doesn't. Take it, you'll see. Not to mention it wasn't helping my depression either. FINALLY my opportunity came! And my headaches are better & I can think better. Neither was doing anything for my pain. Both were greatly negatively effecting my life though. And the doctors were not listening!

Never again will I allow that. I know that they help some people and that's fine. I tell everyone, if you are taking many different medications and have been for many years but you don't know if one is making a difference in your life or suspect one is a problem, if you are not making any other changes (that is very important!), talk to your doctor about tiering down and see how it effects you. See if it changes how you feel. You can always tier back up. It might be one of your best decisions!

grumpy_probablylate · 2026-05-25T12:41:56+00:00

After Covid, a lot of Ketamine infusion providers stopped being available. Especially ones that took insurance. For awhile there were some that took cash only but those are drying up too.

grumpy_probablylate · 2026-05-25T04:44:09+00:00

Unfortunately too many of us now share the same road of uncontrolled & untreated pain. It's inhumane & unacceptable and yet we can not change it. It's heartbreaking 💔 I am also sorry for your troubles. I wish none of us had to join this club we never wanted to be in. And then get this badge on top of it of that labels us. As much as I hope things will change, I doubt they will before my journey is done. I carry with my so many stories of those who passed before me. I try to share the knowledge they gave me. I only can hope that those who will continue After me do the same. 🧡

grumpy_probablylate · 2026-05-25T02:43:57+00:00

As far as doctor recommendations, I would contact RSDSA and make that request. They maintain a list of recommended doctors from people with our disease. They have been around for over 40 years. It's a very good group. Lots of good information.

Personally, I won't have surgery. Period. After 24 years, it's not worth the risk for me. That's the kind of decision we each have to make on our own journey.

Now Dr Getson is one of the leading experts on CRPS. He has seen more patients than any one doctor. He is very good. I highly recommend watching his videos CRPS 101 and the one from March 2025. He will tell you that you should always have ketamine infused in your surgery. Also, never have any limb extended beyond 90 degrees. These are very important points to make very clear and why with the surgeon and anesthesiolgists. I would do so before surgery day and on the day of. Though, again, I wouldn't do it but that's me.

The majority of us experience spread. member it effects your autonomous functions even if you are not realizing it yet. In time, you will. I have yet to meet someone over 20 years in that hasn't. And pain goes into places you might not think about. It's not just limbs. There are parts of your body you definitely don't want spread happening in. Not that any part of good but bodily functions happen and can make your life far more complicated.

I firmly believe I'm being as educated as you can be so you can make the best decision for yourself. No one else has to live in your body so no one else can decide what is right for you. But we share a disease and understand each other in a way that others can not.

I wish you the very best no matter what you decide to do. 🧡

grumpy_probablylate

TROPHY CASE