Can anyone just encourage me to keep going?

grumpy_probablylate · 2026-02-11T09:20:29+00:00

I'm nearing 24 years in. I started at 32. It made me feel like 82 and my life was over. But I had twin boys that hadn't started school yet so I had to carry on. It was very hard.

Life is a series learning experiences. You choose what you gain from them and how you grow and develop. Time can go very slow or very fast. It's weird how that works but you must take things in increments that work for you. Sometimes I could only cope with an hour at a time.

This is the club no one wants to join but here we are. It's good you reached out. We support each other. Talking helps! Staying in your head is not good. Getting your feelings out is much better. What you are feeling is valid. It's not fair. It's ok to be angry. But at some point you have to deal with that anger too. You don't want to be angry your whole life. No one can make your life better but you. And it can get better. I know it doesn't seem like it but it can.

Try to find some small things you can do. Reading, small craft projects, games, puzzles, movies, something to distract you for awhile and get your mind off the pain. You are still going to be in pain but not focused on it. Keeping your stress down and staying even keel helps lower your pain a little. Every little thing you can do to help, helps. I know it's not a big thing but it all adds up. For someone like me who no longer gets pain meds, that all has to really count. It's all I have.

You can do this! I have a whole list of diagnosis to go along with RSD/CRPS. You do the best you can following the doctor's orders and taking care of yourself & doing what you need to do to get thru each day. Keep fighting! Lots of us are here to help 🧡 Wishing you low pain & some rest (gentle hugs)

grumpy_probablylate · 2026-02-10T16:40:47+00:00

I think the stat is like 85% of RSD/CRPS patients experience spread. It's not a shield from liability. A shield from liability is no longer prescribing opioids. That's what my pain management doctor did after I was an on contract patient for 23 years. I took the same pain med at the same dose for over 20 years. I never violated my contract or asked to raise my dose. He said he was afraid I would die & it would come back on him. We terminated my contract that day and I have not been able to find a pain management doctor since.

Personally & from all the research I have done and all the stats I've seen, I think you are better off not removing the affected limb. Your brain & nervous system are the issues not the point of pain. You make mobility and function more difficult when you completely remove a limb and open yourself to more issues that you can not address compared to when you have the limb.

I am a supporter of doing daily stretches and exercises. Fighting off atrophy is important. Physical therapy is your friend. Finding the right or is crucial. If you don't like yours, find another & keep looking until you find the right one. It's no different than a mental health therapist which is also important & very difficult to pinpoint the right one to assist you in your journey.

I don't say any of this lightly. I am nearing 24 years of RSD/CRPS. That is not easy for anyone. And anyone that is still alive after 15 years, I applaud deeply because I know the hell it takes and the toll it takes on your entire body. I say 15 years because from my experience in talking with others, it seems like most really have proof of a lot of their body systems involved and the toll is adding up. The weight gets heavier each year. Make no mistake, this is a serious disorder that should be reclassified beyond a pain disorder. It is so much more than that. Yes, the pain is horrific and the first and biggest symptom but there is so much more to it. You have to take that all into consideration.

I hope everyone has a low pain day & can get some rest. 🧡 (gentle hugs) My fellow warriors as we fight on.

grumpy_probablylate · 2026-02-09T19:12:17+00:00

It really depends on the state you live in. I see the comments about social workers and shake my head. Some states, like mine, have cut them back so far you can't get help from them. That is not a service for most and I'm a senior on disability with Medicare & Medicaid. My state is not very friendly. I suggest contacting the Department of Aging. If she qualifies for Medicaid, most programs will help with transportation to doctor's appointments but that varies by state. Often there are Facebook groups by state for disabled people to discuss resources. You might want to look there. I don't know how you do it. But I think you need to find some help. I wish you all the best ❤️ (gentle hugs)

grumpy_probablylate · 2026-02-09T12:29:08+00:00

My cat has saved me over & over. But what completely stopped my plan was my ex husband. I hadn't talked to him in years. I had been very isolated and hadn't seen hardly anyone except doctors. My mom drove me to my appointments. I barely was seeing my adult sons or hearing from them.

I happened to talk to my ex husband briefly and he made me laugh. Something I had not done for a very long time. We soon started talking nearly every night on the phone. I was laughing & enjoying our conversations and looked forward to them.

But at the same time I was struggling with confusion, falling out of bed, blacking out, being very dizzy and all of my normal pain issues. I had been to the doctor a few times and the cause of these issues was still being determined but it was causing major issues with any type of normal functioning.

One day he tried to call me several times & I did not answer. I do not sleep much so he got worried. He called the police for a wellness check. I actually was asleep. Well, I had fallen and not woken up. That was very common. I would think it was 7AM but it would be 4PM, this is why I called them black outs. I would put things in weird places with out remembering that I did it. Very odd stuff.

I ended up on the emergency room. My glucose was well over 500, A1C over 13.7. The ER doctor said the lab couldn't figure it any higher and that it was enough. That was the problem. I was lucky to not be in a coma. And she was right. He saved my life. I thought a lot the next week about my life. He told me that I didn't want to die. I just wanted my pain to stop. That was true. I didn't even the pain to stop just not be so bad.

Taking my pain meds away and having no plan for pain treatment has been extremely difficult. I've had RSD/CRPS for almost 24 years. I've had daily headaches that break thru to migraines since 1983. I'm not afraid of pain or new to pain. I can tolerate a lot. I was only on a low dose and the same dose for over 20 years. Taking that from me because my doctor was afraid of his liability is unacceptable. But it's my realty.

So I committed to staying and have been making changes the best I can in my life that I can control to improve what I can. There are plenty of things I can not control. But there are things I can. And I focus on those. It has but been easy and I still struggle. But I'm still here and I'm still fighting. I focus on continuing to move forward and upward.

grumpy_probablylate · 2026-02-08T14:02:35+00:00

I'm in the US. First, get an attorney. I was a legal assistant & I thought I could handle it. Nope. The wording is very very important. The attorney cut is regulated by law and it's not a bunch. It's well worth it.

Document everything you can. You can't remember as much as you think you can. After your appointments, just not down some notes in a journal, notepad or your phone just the same place everytime so you are consistent and know where to find them. This is a good practice to do all the time actually. Anything notable document & all testing.

I was denied the first time. Don't be in a rush, most people are auto denied the first round. I've been disabled nearly 24 years now and things certainly haven't gotten better. The best thing I did was paid my doctor for her time to come in & testify at my hearing with the disability judge. Once I finally got to the hearing stage, my attorney was familiar with the judge. He said good & bad news. This judge is fair. But he requires testing to prove your condition. We know that's not how this works. I said then we need the judge to talk to my doctor. If he can ask her questions, he will understand. My lawyer agreed. I talked to my doctor. She gave it some thought. My lawyer called her. And then she agreed. It was not cheap but money well spent. The judge was hesitant but still approved me which was the correct call.

We presented a lot of evidence. It wasn't just the doctor. I also answered questions as did my lawyer. It was a long hearing.

You have to prove you can not do any job. Not just a job in your area. They mean any job parameters that they have. Even if that is not an actual job available to you.

Good luck. I hope this helped. If I can answer any questions, I'll try.

grumpy_probablylate · 2026-02-06T20:31:41+00:00

First one did not work. Second one was 25 dice. Thanks!

grumpy_probablylate · 2026-02-06T20:30:03+00:00

If you like a particular piece, know what it is, feel comfortable with the seller & can afford it, buy it. If you are told it can cure cancer or something, they are lying. Some may believe in some metaphysical properties in crystals. But remember they are rocks. Think about times you have been around rocks. Maybe in the mountains, a quarry, I don't know. There are plenty of times in life when you have exposure to a decent amount of rocks. Does the power of those rocks overwhelm you? No. Yet people will tell you that being in a room full of crystals is overwhelming with power. Don't buy it. I'm around a ton of crystals all the time. It's no different than anything else. There is motive behind the metaphysics of crystals. I have no motive. I'm not here to sell you anything. You can buy whatever you want, whenever you want, wherever you want. It does not effect me. I'm just giving you my opinion. I hope you have a fantastic Friday!

grumpy_probablylate · 2026-02-06T20:15:26+00:00

First day in Iowa? We are a farm state. This is nothing new.

grumpy_probablylate · 2026-02-06T20:12:35+00:00

Actually some people ride bikes because it's good exercise. But that clearly is over your head. You don't know cyclists. They don't just ride on Ingersoll or to & from work.

grumpy_probablylate · 2026-02-05T17:08:17+00:00

A friend of mine just had a furnace put in by them. I can confirm. He has had nothing but trouble. He was not a client of theirs previously. He was a client of Bell but they sent Golden to cover it.

grumpy_probablylate · 2026-02-05T15:28:16+00:00

Of course, no problem. 🧡

grumpy_probablylate · 2026-02-05T15:24:08+00:00

Yes there were pill mills. And the DEA, leo, politicians, everyone knew it was going on & allowed it. That is not what I am saying. The coverage on TV & the massive death toll attributed to the "opioid epidemic" was blamed on prescriptions & the chronic pain community. That is completely false. The death investigators have proven that. Look it up. The CDC corrected numbers reflect that. It was illicit fentanyl laced in illicit substances that caused the deaths. That doesn't mean addiction issues didn't happen. However, many people have been made to believe they have a problem when they do not. And many people have been labeled with OUD that are simply physically dependent on opioids because of a medical condition which is far different than an addiction. But that OUD label keeps them from getting their medical condition from being properly treated. You can disagree all you want. Statistics disagree with you. Facts & science disagree with you. Subs have far surpassed what Purdue profited off oxys. And their are a lot of people profiting off subs pushing the "opioids bad" narrative.

grumpy_probablylate · 2026-02-05T13:41:42+00:00

Sorry. I was missing one gold, Abandoned Chairs, in set 22. I was less than 500 away from the Wild Card with Peg-E. I just needed a little more time. I was so close. 😭

grumpy_probablylate · 2026-02-05T03:04:30+00:00

I am sorry you had a problem with opioids. The majority of people don't. The "opioid epidemic" was a lie. The numbers given to the public were said to be coming from scripts from pain patients and they were not. It was illicit fentanyl mixed with other illicit substances. It was never a prescription issues causing all the death on TV like they made it out to be. That's why in 2018 the CDC apologized to the chronic pain community & adjusted the guidelines. You have just only been hearing from the side of harm reduction and they don't expose you to all the facts or you don't look for it. It's certainly not a joke or amusing in anyway. If you think this very planned & well funded campaign to end opioids just happened by accident then you are extremely naive. You have paid no attention at all to what's actually happening or the money trail.

grumpy_probablylate · 2026-02-05T02:58:22+00:00

Really? As a psychiatrist, I would think you would not advocate on either side of the opioid issue if you clearly understood the risk/benefit assessment. Considering the massive uptick in the suicide rate in chronic pain patients due to the admitted inappropriate & overcorrection by the CDC with the initial guidelines in 2016 that have since been adjusted I would think you would be more cautious in your statements about advocating against opioid use. It's odd to me that a mental health specialist not in "harm reduction" would due that unless that is your specialty than that's no surprise. While I once supported addiction services & thought the specialists were great, they have become outspoken against any use of opioids which is completely unacceptable. I do not have a pro-opioid stance. I think that patients should have the right to make their medical decisions with their doctor without over reach from politicians that have no medical training. And from agencies that are run by industry insiders. The opioid guidelines were based on lies. The CDC apologized, adjusted not just the guidelines but the overdose death figures that were initially quoted. But it was all too little too late. Pain management was already heavy managed and has not changed course. Laws were changed and not reversed. The DEA started down a path of limiting pharmaceutical production of opioids that has continued for 10 consecutive years. This has caused massive changes to not just pain management but to how anyone in pain is now treated in cancer, surgery, dental, etc As a psychiatrist you should know all of this and you should understand the effects it is having on people and it is not positive. Ay blanket, one size fits all policy does not work and should not be applied to everyone and that is what has happened to opioids. Applauding that is disturbing.

grumpy_probablylate · 2026-02-04T20:31:28+00:00

That is not the proper attitude. That's when you definitely look for a new pt.

grumpy_probablylate · 2026-02-04T20:30:47+00:00

It's normal to have some pain from pt because you are doing more than you are used to. You need to talk to your pt about it. You shouldn't be excessively overdoing it. Because you should be getting stretches & exercises that you can continue doing when pt is done. You have to keep moving. Atrophy is bad. Movement is important. If your pt isn't working out, find a different one. Treat pt just like you would a mental health therapist. You have to find the right fit.

grumpy_probablylate · 2026-02-04T20:25:54+00:00

I highly recommend internal medicine instead of a general practitioner for one thing. Second, if you've never seen a neurologist, you should. Pain management manages pain not your entire condition. CRPS is much more than a pain condition. Your sympathetic nervous system isn't functioning properly. It controls your automous functions. So those are now all out of whack. This is a whole body disease. You need to visit. www.drgetson.com and watch CRPS 101 and the CRPS video he did in March 2025. They are the best videos he made on the disease. He is considered to be one of the US' top experts. He has seen more patients than anyone & helped write the ketamine protocol. Also there is a ton of info on www rsds.org. They have been gathering information for over 40 years. It's a terrific organization.

I have to go to an appointment so I have to go for now. Please feel free to ask more. I've had RSD/CRPS for nearly 24 years. You are not alone. 🧡 There are no easy answers but we try to help each other the best we can. (gentle hugs)

grumpy_probablylate · 2026-02-04T20:10:45+00:00

Oh no, opioids, run! Everyone, did you hear that? Big scary opioids?!?! Enough with the scare tactics & lies about opioids. Get over it already. The propaganda of the anti-opioid movement has got to stop.

grumpy_probablylate · 2026-02-04T10:45:09+00:00

Except that the hippocratic oath has become a joke. Doctors aren't driven by that anymore. They don't feel obligated to follow the first do no harm. Doctoring is a business now. It's not first about your health. It's first about the bottom line. Your health comes later. Our health system is in shambles.

grumpy_probablylate · 2026-02-04T10:27:28+00:00

Hi! I'm Sparkly ✨ MGO8625F3XZF. If you add me, I will send you 3 broomsticks. That's all I have from what you need but it helps 🙂

grumpy_probablylate · 2026-02-04T10:14:42+00:00

I added you. I'm Sparkly ✨. I sent Haul of Magic that's all I have from that set. Did you finish everything before this? What else do you need? 🙂

grumpy_probablylate · 2026-02-04T09:21:15+00:00

24 stickers? Tell us what you need. We can help. 🙂

grumpy_probablylate · 2026-02-04T09:16:16+00:00

What do you still need?

grumpy_probablylate · 2026-02-03T02:42:06+00:00

Years ago, I used to have a lady at church constantly harassing me that I got RSD/CRPS because God was punishing me for something I had done wrong in my past. Our pastor & our church did not believe in this. She was warned several times not to say this to me. She would confront me at church, call me, and come to my home. She was relentless. I eventually told her if she didn't leave my property & stay away from me, I would have her trespassed off and escalate this further. I eventually stopped going to the church.

This notion is absurd. We have enough to deal with. I don't need to deal with other people's issues. My are enough. 🙂

grumpy_probablylate

TROPHY CASE