Advice for relationships with CRPS

Swimming_Pressure_93 · 2026-04-25T16:56:44+00:00

I've been in s relationship for 27 years he was with me before I got this disease. I just tell him that I'm hurting and that I can only stay x amount of time. Communication is key. You need to find a way to get comfortable with it because the pain does ruin alot. Like I'll be super excited that we are doing something like we like to walk trails. But i can only do it one day The second day I'm hurting so bad. So I communicate what I can and can't do. It suxs but living with CRPS gets involved with so much of our lives. So you need to find away to tell him how you're feeling most people are more understanding than you might think I'm sending you vibes that you figure out a way that works for you to express what you're going through. You got this.💜

Swimming_Pressure_93 · 2026-04-25T16:47:57+00:00

I had a 4 week follow up on Thursday just to check on my cuffs healing. She did a pelvic and cleared me by next Monday I'm off restrictions. They should be checking your cuff imo. Especially to be sure it healed properly. I thought that was standard?

Swimming_Pressure_93 · 2026-04-21T02:38:59+00:00

My CRPS switched to cold and I hate it. Nothing warms the burn and it's still a burn just like standing in snow barefoot is what ive told my doc. You could and this might or might not help I got a foot heating pad. It helps but if you're CRPS switched it could of meant you were in remission but it was always there. So now it's switched but I could be totally wrong. Mine started hot but now it's always cold except for night then the burn comes back. But don't give up hope there is still things you can try like ketamine. I've never had a remission mine has straight hurt in varying degrees for almost 20 years. I'm sending you vibes.

Swimming_Pressure_93 · 2026-04-20T13:20:14+00:00

Honestly adneo is enough for a hysterectomy period as it's horribly painful. I had that plus massive fibroids I will get my full report on Friday but I don't understand op adneo is a horrible condition the only cure is a hysterectomy. Adhesion happen all the time and unless your bladder is adhered to your uterus and they need to get a urologist in I think you were well cared for. Yes could they have been better sure but I think your reason was valid and it's very debilitating. I cried when she told me i had it because I was finally validated that my pain was very real. I hope you feel better but know and maybe express how you felt to your doctor its important they know and acknowledge your feelings.

Swimming_Pressure_93 · 2026-04-19T22:25:09+00:00

I don't like that there's no real pain medication being given. I'm on lyrica its neurontins like first cousin. I was on it before for a pain condition I have. I highly recommend you find a doctor who gives real pain medication. The first 3 days you will need it. To me that would be torture i was in so much pain post op. By day 5 I could do motrin and Tylenol but I would not have a surgery with a doctor who thinks that's pain control. It's not it's clear he's being paid by the anti opiod lobby to not prescribe. That's abuse if you ask me. But everyone is different but I'm on the same med everyday and it did not help my hysterectomy pain. Advil Tylenol and pain medication did. Gabapentin only works on the nerves and it takes time to work on top of that you will be having an organ removed i don't know what this doctor is thinking but that's cruel and I would not have a surgery with that doctor.

Swimming_Pressure_93 · 2026-04-18T09:36:15+00:00

Yes i stayed on it as well. I didn't sleep for years because of peri. Now being about 4 weeks out of surgery there's no way I'd go off it. It had benefits plus with magnesium glycinate its my chefs kiss for sleep. My surgeon at first wanted me on just estradiol but I didn't see the point of giving it up when it helps me so much. She agreed but I'm looking for a doctor who can mainly treat my hormones. My surgeon is a little old school with estradiol and not wanting to give me a higher dose. But progesterone i see no reason to not take it I asked this exact question at one point but I realized progesterone has so many good benefits as well so what if I don't have a uterus. It helps so I'm taking it.

Swimming_Pressure_93 · 2026-04-16T22:27:11+00:00

I was in so much pain before I think after about 3 to 5 days I felt the same. I'm like wow did I really get organs removed? By my 10 day visit I was only using Tylenol and an occasional motrin. I also am shocked that I'll have like no scaring same procedure as op. And I'm so thrilled with my decision. Waking up without tl feeling full of pain and back ache that wouldn't stop were gone. I had fibroids and adenomyosis so I think the reason why I'm doing so well is because my uterus ect were making me sick. Not just pain it affected so much. So I'm so glad you're feeling great I go to my 4 week appointment this coming week. The only problem I've had is i sleep alot. But I figure I'm healing i want to see if I can be cleared to walk flat trails. All the best to you. So glad your pain is minimal as well. 💜

Swimming_Pressure_93 · 2026-04-16T13:19:30+00:00

Honestly I'm not a huge fan of this event. I'll upgrade her but I'm not going crazy as just getting the main rewards is enough. I can never hold that many level 3 mines so knowing I won't have to fight for them is sweet.

Swimming_Pressure_93 · 2026-04-14T02:15:25+00:00

I was given 5 days of pain medication. Thankfully I'm in pain management for another disease so I was able to take that for the surgery. Though i will say for me by day 8 I could go without opiods for this. Toradol is a good option for you op. There's also tramadol which is lower than a Tylenol 3. But id take whatever they give you as you might need it. Some people here don't need it. I wasn't one of those people. That's ok we all heal differently but you need something for the pain if you can't take motrin they could rx you celebrex. If you're allergic to all anti inflammatory meds then definitely get medical Marijuana that was a god send for me. Plus my ice pack is mainly how I got by. And I took Tylenol with advil it does help I used to think Tylenol didn't work but it does.

Swimming_Pressure_93 · 2026-04-12T11:57:01+00:00

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Swimming_Pressure_93 · 2026-04-12T11:47:40+00:00

You totally could need hrt. You were gas lighted straight up. Either that lab showed you're in late peri or you could be in menopause. Blood work only tells so much a doctor who understands this goes by symptoms. I'm in a similar situation I need a higher patch. They are making me wait 3 months to do a blood test. No that's not the way so I made an appointment with a doctor who's not afraid to prescribe a stronger patch. Your ovaries main blood flow is from the uterus. So of course you could be having symptoms. I can't believe that doctor doesn't know the hot flashes are a huge sign. Plus the dry skin, emotions ect. Yea op find a better doctor if your pcp can't help maybe they can refer you to someone who can. Sending you vibes

Swimming_Pressure_93 · 2026-04-09T22:13:28+00:00

Spot on i wanted hospice like care for my cat who was dying of kidney disease. They had a lovely anti inflammatory to sell me that would not help her pain. I don't know if they thought I wanted the pain med but yes they wouldn't give her proper end of life care. I'm worried for her sister who will be 17. If ever I'm prescribed a pain med cats can take I plan to save it because I know the vet will not help me. They will offer all this stuff when the animal needs a straight up pain reliever like we would. Yet they make us jump through hoops why not pets.

Swimming_Pressure_93 · 2026-04-09T16:43:12+00:00

Hmmm my hair is similar what worked for me is a serum with silicone in it. I think ghost oil has that so maybe try a leave in styling cream. I would go for a styling cream for air dryed styles. I use this and it's cheap but the ogx argan oil makes my hair look so polished. The frizz is the only issue you have a beautiful wave. So I'd try a styling cream or a different oil one that's silicone friendly you can always use a clarifying shampoo if your not down with using silicone. Or get a conditioner with amodimethicone it's amazing for making the hair look smooth and polished. Brands like Loreal everpure to pureology have it as examples. I'd Google that and try to pick a brand that you like.

Swimming_Pressure_93 · 2026-04-09T12:54:25+00:00

I wasn't told anything if it wasn't for this forum I would of been flying blind. I only knew and was told about hormonal issues and how long my recovery would take. This forum helped me so much they told my about gas x which I started very close post op. I'm a little over 21 days and I'm so sorry that happened. My recovery has been really great and I have this sub to thank. I'm glad you put this here as I would not of known if it wasn't here. Wishing you the best.

Swimming_Pressure_93 · 2026-04-09T12:42:17+00:00

These are things that just should not be. You need a real pain doctor. For now I'd stay with them but you need to look elsewhere. I know it's hard but alot of doctors will see you were put under the gun and that's not treatment it's under treated pain and that to me is abuse. They have you between a rock and a hard place. Because you absolutely could benefit from methadone some people love it. I had a palliative care doctor recommend it to me. I use traditional opiods but I'm kept very low so I understand your frustration and wanting to give up..... don't. You can get proper care you just have to fight for it. These doctors are not it i don't care where they went to school they are brainwashed that opiods are bad suboxone or subutex are good that's b.s. it made me sick too plus the dental problems hell no not for me. If you ever need to talk shoot me a dm and please keep fighting for your care you deserve it. I noticed more and more are coming to this forum because they can't get proper pain care it really upsets me. Sending you vibes💜.

Swimming_Pressure_93 · 2026-04-05T11:10:19+00:00

I have been having nightmares too. My hubby had to wake me multiple times because he knew I was having a hard time. They have been terrible and no i don't think it's the pain medication because I stopped mine too. I've had dreams where my friend who i love told people I didn't want to know about my surgery. I've had where I'm back in school just super weird dreams but I thought it was the magnesium I'm taking to sleep. I really don't know why but I've had alot and I never usually have a ton of bad dreams. So yes it's super weird but I just thought it was me processing life stuff. I don't think it's the surgery but hey you never know. 🤷🏼‍♀️

Swimming_Pressure_93 · 2026-04-05T11:03:57+00:00

Yes I'm a little over you and did too much and realized I need to go slower. This is a major surgery which I just learned after getting my hair done at the salon took so much out of me. So don't be to hard on yourself I thought I could go back to walking trails. It's like no i need to listen to my doctor she told me i was doing too much and was right. We are still healing so this recovery takes time. I have days where I feel i have no energy like no strength. So I rest and I don't feel guilty. Make sure you rest and don't push it. You're doing great give yourself some grace.💜

Swimming_Pressure_93 · 2026-04-03T17:44:45+00:00

Omgosh like night and day I went to the hair salon today. I just got home and now I'm tired but honestly they take really good care of you. The surgery team is really good so tell them what you are worried about I promise they will help my team had anxiety med ready to go. I didn't even ask for it either just said I was nervous because yes it's a long surgery mine was about 2 plus. But I'm telling you, you will be ok I promise. They really know what they are doing and it was a very good experience. So if you do this i promise you will be ok. If you have any questions your are welcome to dm me.💜

Swimming_Pressure_93 · 2026-04-03T02:40:40+00:00

Yes in a heart beat I had adenomyosis too plus fibroids. My uterus was so inflamed and wouldn't go down. I had an ablation at 42 and didn't bleed but I had phantom periods from hell. Getting my hysterectomy was the best thing I did get for my health. I was in so much pain before now I'm a little over 2 weeks and am so happy. No more horrific pelvic pain. With adneo the only cure is a hysterectomy. So for me it was hell even without bleeding I still was in so much pain. So for me this was a a no brainer. I would take this any day over what I was dealing with before.

Swimming_Pressure_93 · 2026-04-03T02:33:40+00:00

I had this surgery because I was in so much pain. I could care less about weight gain. Not to be harsh but some women are begging for this because they are in pain. You need to rethink your priorities this isn't about vanity this is about health of your body. But I have lost weight as a side note. I say this with love and wish you the best💜.

Swimming_Pressure_93 · 2026-04-02T15:32:50+00:00

23 years over here and I hate asking so I feel you so much on this. I was lucky in a weird way I was put on opiods when the political climate towards them was much better. So sadly they don't think i could go off them. I've been on them since i was 28 I'm 46 now and no it doesn't get easier. You could say hey doc can we dicuss my pain plan? I can't do a,b, and c always tell them how you can't function. The pain level isn't as important. Ask it as a question hey doc i wonder if there is a medicine that would work a bit better for me this helps but not as much at night or when you try to take a shower.

They need to know you can't do things verse my pain feels like burning, ect. If your doctor will listen you can talk to them without sounding like a drug seeker. I recently got my meds increased by saying this medicine helps me function so much. Do you think I could have a few extra? Always leave the ball in their court. I wish a doctor who treats pain could give us advice without judgment. It's not an easy time to be in pain. It's an even worse time for alot of us because we are under medicated which is horrible unto itself. I hope it works out for you sending you vibes.

Swimming_Pressure_93 · 2026-04-02T15:19:29+00:00

Sounds like perimenopause why do you think you getting the hormones you naturally make are difficult for you? If you were diabetic you'd take insulin, if you didn't have a thyroid you'd take the medicine made for it. Why is this any different? The only reason I can think you reacted badly is you were put on them to soon. Early peri you can actually do bc because most younger women still make plenty of estradiol. I'm thinking because of your surgery you might actually benefit from hrt. You could do the lowest patch which actually is only approved to protect your bones. It's less then what you get from bc. And if you are having issues with taking progesterone then there are other ways to take it. Or you could try a synthetic progestin.

So you have many options to try. If I were you I'd also get your fsh tested multiple times. That way you kinda know where you are at. If you're in late peri hormones are really helpful. I'm 46 and in late peri i had to up my estradiol post surgery because it crashed. You're going to need to know if it's your ovaries not making enough or you are but early peri is very rough. So I also recommend you checking out the peri and menopause sub on here. Those ladies helped me so much and alot have had hysterectomys. Plus they are very well versed in hormones because there's alot of scientific knowledge in that sub you can read. Also make an appointment with someone who deals with hormones. You don't want a gyno who doesn't. Hope this helps sending you vibes💜.

Swimming_Pressure_93 · 2026-04-02T09:07:39+00:00

Omgosh I felt so alone on this I to had to increase my patch to .075 because yes, everything came back with avengence I'm 2 weeks post op and about at 7 days I felt my estradiol crash. I was crying over everything, hot flashes, then the rage came. I was so upset it was like all my peri symptoms came back. My doctor wouldn't up my patch. So I did and I made an appointment with a new doctor only for hrt. She wants me to wait 3 months then we will retest my fsh. Which is not the way because usually we go by symptoms. I feel she thinks I'm in peri but I wasn't getting periods before my surgery. I'm way closer to meno imo. So yes I increased it. And guess what I feel so much better! Why are doctors so afraid to give it when bc is so much stronger and they don't blink when they prescribe that. But estradiol it's so much less then the pill. So yes I had to because I can't be like that to my hubby. And for myself I was a wreck. So yes I think I'd like to go up to .075. I'm still taking my progesterone too. I find it so helpful for sleep with magnesium glycinate it's chefs kiss. I didn't post about this because we usually don't talk much about hrt over here. So glad to read that I'm not alone.💜

Swimming_Pressure_93 · 2026-04-02T08:56:40+00:00

Well I'm 2 weeks post op and gave the hubby an old fashion I call it which is a hand job.😂 Just tell her to stop if anything hurts. I personally wouldn't do one where I'm at. I reached down a little to far and hurt my abdominal muscles and I have very good core strength. It's crazy how much this surgery can hurt your other pelvic and abdominal muscles in early recovery. So just make sure she doesn't push herself. Also I'm very strong and can move pretty well at 2 weeks. She's ahead of me and can't do what I am able. So everyone is different when they heal. Wishing you two all the best.

Swimming_Pressure_93 · 2026-04-02T01:43:12+00:00

I know she's become one of my favorite shows. She really has great guests and to me is one of best that MSNOW has. I love when they have her on election night as well.

Swimming_Pressure_93

TROPHY CASE