The last two weeks I have been in a complete misery hell! It started out with kinda like cramping in my pelvic area then stabbing pain. It then went into my stomach and kidney area. I have been nauseas, and horrible pain in my whole pelvic, abdomen area inside. I feel like my insides are being torn and stabbed and ripped apart!!! I want to die! And the burning! I am starting to think my CRPS has spread into my organs. I am wondering what others have feel? I can't breath sometimes, well most of the time. I don't know what to do. I have CRPS in my legs and am at a loss now. I ..... I just don't know....

Hi Angelina,

I'm sorry you have rsd and these horrible pains. I have had the same pains and my gp had me get an abdominal and pelvic ultrasound on top of an mri. They found out I had endometeriosis. It had gone undetected for years they told me, even though I complaiend to my obgyn foryears about this pain. My obgyn said it was normal cycle pain and just me getting older pains. They never did tests. Ithank God my gp did take tests. he couldn't believe they didn't. I then went to get the endo removed and also had cysts and an infection removed too. I thought it was my rsd causing the pain but it was the endometriosis. But the rsd made it feel alot worse. You may have some other problem too. maybe its your appendix. I don't know because i'm not a dr. but I would start with your gp and ask him what he thinks and of maybe he can have you get tests for your abdominal pain. Also tell your obgyn and pm dr and neurologist to see if its the rsd causing it.
I know its hard and scary, but try to keep as calm as you can so as not to aggravate the rsd. that will cause flares. I used a heating pad on my stomach to help ease the pain along with my pain meds to keep my rsd pain under control. Maybe that might help you. I also drank milk to calm my stomach. I had alot of heartburn too so that helped. If someone can drive you to the ER tonight,if you can't wait until tomorrow to see the dr. I would do that. They will probably do those tests on you there. or call an ambulance. otherwise maybe start with your gp asap. My gp told me though if that when someone has bad stomach pains they should see a dr or ER right away. I 'm here if you need to talk again and try to hang in there and distract yourself by watching tv while lying down in bed with the heatingpad until you see a dr or go to ER. Just don't fall asleep with it on. I did that several times by mistake. I hope you feel better soon. Try to be believe it will be okay. I hope you find some comfort knowing that youre not alone. We're all here for you. Take care my friend.
P.S. I'mstill healing from my two endo surgeries which were a year ago, but am better than I was with the pain it caused. I still have terrible rsd flares though sometimes, but the meds and exercise I'm hoping will keep that pain under control. So keep the faith. the scariest part is not knowing. Once they find out what it is, then they can help try to fix it for you. Take care.

I have had a pelvic and abdominal ultra sound already and both came up fine. They did some other tests too and all were ok. They put me on antibiotics anyway and I even though I am better than I was I am still in a lot of pain. Tonight it is really bad and my legs are really acting up too. So everything but my arms are hurting and I can't get control. I feel like I am loosing it. I can't live like this! I don't know how I am going to get through the night let alone the rest of my life. How am I going to take care of my daughter? I am all alone. I just can't do this!

Maybe try a gastrointestinal specialist. I may try that for my stomach pains that I still have.
There not as bad but still hurt. Or your pm dr.may be able to increase your nerve and pain meds. And maybe a family member can help with your daughter. Check out rsdhope.org. They may have drs and support groups for these things. If you need additonal support along with this forum, rsd hope has mentor programs too. I wish i lived closer to you so that I could come over and help you out, but the best I can do is listen and try to give you my experiences and suport online. I don't sleep much because of the pain from my rsd, so if you need to talk I'm here. If i doze off , i will get back to you when i wake. And you're not alone. I'm here and all the other people on this rsd forum are awesome. Sometimes just knowing others care helps get you through the night, even if it doens't take the pain away. try to hold on. your daughter needs you. My son keeps me going. when I think i'm done, I think of him and that gives me the strenght to carry on. Take care. PS - check for diverticulitus too if you haven't already. good luck.

Did he also check your gallbladder? I know it sounds weird but this sounds like it might be gallstones. I'm not a dr either. This is also why rsd is called a suiside disease. We hurt so bad we do contemplate suiside to make the pain stop. Even for a little. I know I have. Also when you start feeling a lot of pain it makes you flare worse. Have you tried an epsom salt soak? It might help. Sorry I can't be of more help. If the pain gets too bad go to the ER. I was almost in for a trip there myself yesterday, but I pushed through. Don't ask me how I pushed through because I don't know.

Hi Angelina, hadn't seen you for a little while, I'm so sorry you've been dealing with all this sounds frightening, I can totally understand you feeling like you're losing control....

I'm glad that your scans and tests were clear, although of course it doesn't help your pain

I had gallbladder problems myself and had it removed a few years ago (pre-CRPS) and I will never forget the pain of that - it was weird because it wasn't near the gallbladder itself, but in my upper back. It's called referred pain, and it's because you don't feel the pain in the gallbladder itself due to the way the nerves are in that area. So although it's a good idea to check everything out, I doubt it's that from what you describe.

Have you been able to see your pain specialist since these pains started? It sounds like you need to see them and discuss the possibilities of what this could be. I know you must be scared of it being the spread of your CRPS, but it doesn't mean it is - and we all really hope its not And now that the tests are clear the best person to help you is a specialist who can at least advise you on what's best to do, and hopefully help to control the pain.

In the meantime, the meds you have, warmth, soothing teas like chamomile, relaxation (I know, I know, sorry, but try if you get a bit of a let-up) and a healthy diet with plenty of vitamin C (2x 500mg per day) to help prevent/limit any spread, and people who can help to distract you a little with conversation are a few things (you've probably already tried them!).

I'm so sorry Angelina, I will be thinking of you, and hoping that whatever this is, it can be sorted out and you can be freed from that terrible pain. You have to hang in there though, don't let this horrible disease overwhelm you.

Take it easy. I'm sending you soft virtual hugs, and a hand to grip yours in the darkness. You'll get through this.

Bram

Hello Angelina,

I am so sorry to hear that you are having such a terrible time right now, I wish there was something I could say or do to help you get through it!

The pain and area of pain sound very familiar to something I go through periodically. The nerve damage I have is right in my groin crease (where the hip/thigh bend) and I have a neuroma just to the inside of the hip bone or in the very lower pelvis. This causes severe pain in my lower abdomen/pelvis during my cycle as well as when air or stomach troubles are causing movement in my lower bowels. There has been several times when I felt much like you describe. What we (my doctors and I) have discovered is that when there is pressure in my lower abdominal area and or pelvic area during my cycle that this causes muscle spasms that affect the neuroma and nerves surrounding it. It makes sense since often time it is scar tisssue that traps nerves and if this scar tissue is disturbed like with cramps then that would escalate pain. When I sit upright and even clear my throat, this sends the shocks down my thigh it is reproducible every time and is the same thing that happens when I walk or flex my hip/thigh; have you noticed anything similar?

If you have ever had any abdominal surgeries or infections then this can also cause adhesions to form. Adhesions are scar but it is a "sticky" mess of scarring that actually causes internal organs to basically stick together. If you have adhesions then cycle pain, gas, constipation and even intimacy can severely increase pain at times. What can be done for it - warm compress, muscle relaxers, OTC medications like Aleve, Ibuprofen, Advil or even Midol. Stronger meds can work but.. I personally don't know which one would work for this type of pain.

Did you ever get a new PM doctor? What do they have you on?

You will get through this now and in the future!! I know it is hard to fathom that right now but.. you will. What are you doing to help you get through the tough times? Having a "pain flare protocol" will help when we are so wracked with pain it is hard to think straight.

I hope you wake up today feeling better than yesterday,
Tessa

Hi again Angelina,

I hope you're feeling better today. My catscan showed two small gall stones in my gallbladder, when I was in ER a few month ago, which I'm contemplating taking out. I didn't think of that. Maybe that's what it is. My dr said mine didn't need to come out unless they caused pain.
I think my rsd makes the pain worse with gallstones, but am not sure so I am going to see a gastrointestinal dr like my gp recommended. Not takng advil for a while does seem to be helping too. Well I hope that you're better and that your drs can find out what is soon, so they can help you to feel better. Try to hold on and my thoughts are with you.

Hi Allanira,

I'm sorry your were in so much pain too yesterday. I hope you're feeling better today. I was depressed yesterday and my hands were hurting, but my stomach finally felt better after 8 long days of torture. Try to hang in there and my thoughts are with you too.

RSD - Renee,

I would be careful of having the surgery to remove either the stones or the gallbladder unless it is really to painful to live with. With RSD/CRPS any surgery can cause spread and that is why all the experts in treating CRPS caution against surgery. Like you said CRPS/RSD can increase other pain.. in other words that pain might be coming more from the disease itself rather than the gall stones so even if they were removed that doesn't necessarily guarantee you will be rid of the pain and in fact it could get worse after surgery. Just my two-cents.. be cautious and really consider how you could handle it being worse afterwards.

Tessa