Please help me!
 

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. :hug:

Hi Angelina, hadn't seen you for a little while, I'm so sorry you've been dealing with all this :hug: 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 :rolleyes:

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 :hug:

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

Thanks Tess,

I will think twice before doing this then. I don't want anymore spread. It's already in my arms and legs and hands and feet. I don't think I could take anymore pain. I'm hoping laying off advil will help. I feel much better today without it, though my darn fingers are swelling and and my rsd hand is very cold and stiff when I type. My pm dr said trying to type a little everyday is good exercise for it, but it is starting to cramp. He sd I have to work through the pain,and if I don't do it, I may loose the little movement i have in it. Plus if I didn't type a little, I wouldn't be able to talk to all of you and I don't think I could get through my days anymore without your support. Though my family and drs are great, you guys know what it feels like and truly understand the pain. And I want to give back by trying to help be there for all of you as well. thanks again and hope you're haveing better day today too. P.S. I am starting my walk today. 5 minutes. It's really nice fall day today here in Jersey and the leaves are starting to turn colors, so I'm going to give it a try. Thanks again for caring and take care.

Oh I love the fall.. especially in your neck of the woods! Vermont & Maine are also so beautiful this time of year! It is raining like the dickens here.. two storms fronts are suppose to drop between 4-8" of rain in the next 24 hours, flood warnings all around the lower elevations. :( I'm gonna cozy up to the fire today!

Have you tried peeling potatoes/apples for therapy? Also, make sure your desk, chair and computer screen are ergonomically correct because that alone will exacerbate symptoms. Another thing you can do to help alleviate pain and blood flow problems to the hands is to stop and take time to roll your shoulders by making big circles with them in both directions. Make sure you are sitting or standing properly first and then just relax and roll.. then when you are done simply shrug your shoulders up.. hold it for a few seconds and then drop them back down to neutral. Do that 5 times working up to 10. You will be amazed at how relaxed you will feel when you are done. Do this several times throughout the day or anytime you feel pain coming on either in your hands or head. We don't realize how bad it is for our neck and arms sitting at a computer, watching TV, using our phones or laptops until the damage is causing symptoms. All of these things weaken our core and bring our heads forward causing havoc on our spine and nerves. Paying attention to wear your head is sitting on your shoulders throughout the day will also help you. Your head should be in line with your shoulders not, in front of or behind.. but squarely on top of. Try it.. let me know how it makes you feel. Another great therapy is sorting change.. take a change jar and sort them into different jars and if you don't have change laying around try it with M&M's (lol.. just don't eat them or you will have another problem hahahahah). Simple little things to keep your hands moving and nimble.

Take care,
Tessa

I will try the change therapy. I know in pt they gave me marbles that helped, but I will try change next. That's a great idea. M&M's may be dangerous though, because I have no will power when it comes to chocolate! Especially M&M's! Love the peanut ones the best!! Maybe I'll have my husband pick me up some today! One bag for me and one for my son. (It's his 20th birthday today!)
It seems just like yesterday when I had him. It as a beautiful fall day just like today. I love Vermont too. Before I got rsd we used to go to Stowe for vacations. The Von Trapp Lodge was awesome. It where some of the real "Sound of Music" family lives. I love that show. Anyway, thanks again for all of your great advice and caring and I hope the weather clears up for you soon and that you have a great day.

Hi Angelina, I hope your're okay and having a better day and hope you have a better night. Take Care.

No every pain management doc I see tells me there is nothing for me to do. My ankle doctor is going to send me to Seattle to see a CRPS specialist. I am on Cymbalta, Lyrica, and Oxycodone. I have Lidoderm patches but they don't work real well. I do use them when I have back pain though. Your pain does sound very familiar but my pain goes up into my rib area and from front to back. And now when I eat it gets worse.

I don't think they did check my gall bladder.

Sounds like it could be your gallbladder, (but I would think a catscan would have picked that up) but maybe not. the catscan I had at the ER a few months ago picked up two small gallstones that my gp said I may want to see a gastrointestinal dr to check out. maybe check with a gastrointestinal specialist to see what he thinks. I'm no dr. so I'm not sure. I also take neurontin along with percocet for my rsd pain. percocet alone is not enough for me. My pm dr prescribes both for me. You may want to ask him about taking that. Let him know of course the other meds your taking.
I take advil too, but have been off it for a while to give my stomach a break. I don't take cymbalta or lyrica. I was told that the neurontin is just as good as lyrica for rsd and firbromylagia (which I have too). And last but not least, you may want to see a dr about taking an antianxiety and antideprssent meds. I take zoloft and xanax and they help alot when I'm stessed and in a lot of pain. I hope all goes well, and that you find the right drs to help you. My thoughts are with you. Take care. P.S. You may want to find another pm dr. I had drs tell me there was no more they could do before, and I said that I couldn't live with the pain, so they referred me to a specialist. good luck my friend and don't accept that "there is no more they can" do as an acceptable answer, if you're still hurting. Ask them for a specialist or maybe find anther dr. Hope you have a better night.

That is unbelievable about the PM doctors!!! Seems like it was a few weeks ago or more that you were going to see someone in Seattle; what is the foot doctors hold up in getting you in? Do you know who you are going to see yet? I actually now have 2 different ones working together - they are both incredible. I think I already gave you one name but if not just ask and I will tell you their names. Wow.. Cymbalta and Lyrica together? Why the need for both? How about Amitriptyline? This is usually taken at night to help with sleep/depression and muscle spasms or tremors they often start at 25mg and then slowly increase by 10mg increments until you reach 75mg. I would ask about that one the sooner the better. What about long acting oxycontin instead of Oxycodone or better yet a Butrans patch? This would help regulate pain more consistently so you don't get the highs/lows or rather pain wind up?

Re; the pain - mine also went up to my ribs when it was really bad. I can't recall if it went front to back or not but I know it was miserable and it must have went to my back because I remember wondering if it was my kidney's. Food was a problem as well but mainly because I had lost my appetite due to the high levels of pain. Have you looked at the side effects of the medications you are taking? Do you think this may be contributing? The oxycodone was really hard on my stomach!!

Can you call and make an appt. with a pain doctor without having to wait for your foot doctor? You can gather all your records or just let them make there own diagnosis based on a new exam and your history. Just seems like you have been waiting way to long to get into see someone who can help you?

How are you feeling tonight?

I haven't had a catscan. And no pm doctors will see me in my area so that is why I am headed to Seattle because the doctor I am seeing won't settle for "there is nothing we can do". He is the only one who is helping me and he is a foot doctor. I don't know where I would be without him! I am going to call my family doctor tomorrow because my stomach is just out of control.

I don't know what is taking so long. I was thinking of calling them to ask about the Seattle thing but I didn't want to be rude. Then again it is my life we are talking about, so I guess it is ok.

My family doctor wanted me on both Lyrica and Cymbalta, I don't know why. He said it just works better. I can ask about Amitriptyline. I have heard about the Butrans patch once before, so I think I will ask about that too. The oxycodone is just such a life saver for me it scares me to not have it, ya know? It is the only thing that has so far given me any relief. Sometimes it doesn't work very long, but at least it is relief and I can sometimes actual get out of bed and not want to just scream and scream!

The catscan at the ER is where they found my gallstones. My gp sent me to the ER to get it. You may want to ask him if he can write a script for you to get one or what other tests he thinks may help find out whats is wrong with your stomach. And there are good doctors out there who care, like your foot doctor. That's great you have him. I hope the doctor he's sending you to can help you. I know its hard to keep searching for the right doctor, but i'm sure you'll find him or her. Don't give up hope and try to hang in there. You have a plan now so that's a good first step. Hope you have a better night tonight.
And you're not being rude because you want to get an appointment right away. You're in alot of pain, and you are trying to get help. If you don't keep up on the drs about it, it may take too long. You have to look out for yourself. You can't depend on them to do that, or you may be waiting too long for an appt. (Trust me I've been there on more than one occassion.) It is your life and that pain in my opinion should be addressed right away. Try to be strong and know that you are in the right to pursue the issue. Be firm but always pleasant, for they can always say they are "booked up indefinitely" if you're not. (I've learned that the hard way too.) Take Care.
PS - I saw some organizations on rsdhope.org that may be able to help you too if your interested. You may want to check it out. Hope it helps.

When I initially made my appt. to see the PM doctor I am currently with I made the appt. myself. I didn't need a referral to make the appt. and I really wanted a fresh consult based on his own observations/diagnosis (I guess I was at the time still hoping somehow I was misdiagnosed and something could be done to relieve me of the pain.. bummer that was not the case). I did take with me all my records, xrays, chart notes, MRI's and recent pharmacy detail report with all my prescription history. He was wonderful, took his time and I am very pleased with his care/support so far. He didn't even mind or become offended when I found another doctor who specializes in CRPS to also consult with and now they are working together to help me, so don't be afraid to reach out on your own. Good doctors don't mind as long as you keep everyone in the loop with regard to all care being received. I make sure all doctors and myself are copied on all records that way there is no misunderstandings and no stone un-turned in my care.

Regarding the Butrans patch.. I also have oxycodone for breakthrough, my PM doctor insisted I keep that on hand just in case I needed it. Also it takes a few days for the first patch to build up the correct level so you will need to rely on what you are currently taking until then. I am much happier with the patch and I was so reluctant to try it!! I wasn't good with medicating and seem to always let myself get overcome with pain before I took anything so this works better for me. The only drawback is that I have a bit of nausea/vomiting with each new patch (but I do with oxy also) so we are working on how to combat that without adding anything new.

Pain Consultants of Washington is where I am going.. you should really check into them. Shoot I would even take you to your appointment if you needed help!! I'm heading your way to visit my in-laws in a couple of weeks maybe we could meet up for a cup of coffee or something?

Also.. have you considered getting an internal medicine doctor? They often understand chronic pain and some even work closely with PM doctors. That might be a good choice for you since you have more than one issue going on? Just an idea.

Hang in there,
Tessa

Hi Angelina,
I just wanted to let you know I was thinking of you and hope you are doing better today.
Take care.
Renee.

I have to have a referral because of my insurance. The reason it is taking so long is he is trying to get all my records together. What is an internal medicine doctor? And I would love to meet up for coffee!! :)

Finally some answers....
 

Well I got some answers... My ultrasound showed that I have a hemorrhagic cyst on my left ovary. It has been over a week since then so they did another one today to see how it is doing because the last few days my pain has gotten worse. I will keep you all updated. My doctor said I should here back today.

Hmm that is silly, your doctor should not wait to make you the appt. especially considering the well versed and experienced doctors have a longer wait list. If medical records are being requested they should just be forwarded directly (takes way less time) and your foot doctor should write a brief synopsis of what is going on with you (his opinion)and then kindly request a consult and rx. This means your doctor would be requesting the new PM doctor to diagnose and treat accordingly.

An internal medicine doctor is one who treats the whole body including chronic diseases. They are a glorified PCP and generally work more closely with specialists for hard to diagnose or treat conditions. They are not pain doctors but work closely with them and other specialists in your care. They can also treat/diagnose the co-morbid effects CRPS/RSD causes for us.

Coffee YIPPEE.. I will PM you as my trip gets closer :)

Sounds like your ultrasound might give some answers to you pain.. let us know when you hear more.

Hang in there girl..
Tessa

I've had cysts on on ovaries and they hurt like hell. They can remove them, but be sure to check with gynecologist and gp and pm and neurologist first. Make sure they all know about your rsd and the possiblity of spread of rsd with surgery.
I'm so glad they found out what may be causing your pain. Hope you get better soon. :hug:

Hi Angelina, I hope your day was better today. I have twice had cysts on an ovary and I was doubled over in pain and that was... 30 years ago, about 20 years before the RSD. My mom was a post-op nurse and she thought I was having an appendix attack with the first one. Both of mine ended up bursting bursting before they could do anything beyond diagnosing. It's gross to think about, but it relieved my pain. Hopefully they will be able to resolve this for you really soon so you can get back to being a mom. Soft hugs to you tonight, and hopefully your pain is easing.
Sylvia

I'm glad they found out what was wrong for you Angelina, but I'm sorry you're looking at a surgical solution - although I'm betting that's still preferable to it being the CRPS and having to face that pain forever. With a good surgical team in close contact with a decent pain doc, and nurses who are in the CRPS loop too, you should come through well.

Take care chick, a few more tough times yet, but at least you know what this is now, and hopefully they can treat it quickly for you.

Bram :hug:

Dear Angelina,
My heart goes out to you! I finally caught up with reading about this horrible ordeal you've been through!

I'm glad they found out what is wrong. Please make sure they klnow to manage your RSD before and during the surgery. Take plenty of Vitamin C before and after as well.

Praying for you! :hug:

Checking in..
 

Hey Angelina,

What did the doctor say? Do they think it will dissipate on its own or are they considering surgical intervention (I hope and pray not)?

How are you feeling today?

We are thinking of you and hoping things are improving.

Take care,
Tessa :hug:

Well, I had surgery yesterday and I guess it was a good thing. I had lots of adhesions from my C-section and endometriosis that he did his best on cleaning out. He ended up having to take out the ovary and the fallopian tube on the left side. He said he found a lot more than he thought he would and said no wonder I was in so much pain! I should feel so much better now. Of course right now I am in pain but that is normal. I am just trying to take it easy right now. Thank you so much for all of your help through this hard time! You have all really helped me through this!!!! I am feeling pretty down about loosing an ovary. :( But atleast I still have one.

Remember your Vitamin C Honey, it's supposed to help prevent any spread and it can't hurt.:hug:

Hi :)

I'm so glad you had the surgery done quickly and that you are feeling normal pain considering the procedure. That's a good sign. I hope you feel better really quickly and that this is the end of that horrible time for you.

Lots of gently hugs :hug:

Bram.

Hi Angeliina,

I wanted to give you some flowers... iFlowers will have to do ;)

So sorry you had to go through surgery in order to feel better! I hope you heal very quickly!! Bummer about the ovary and tube - you are right at least you have another one ;)

I don't know if you remember me posting on this thread earlier about "adhesions being a sticky mess" or not but the reason I mentioned it was because I had gone through this very same thing years ago. One thing to keep in the back of your mind is that even though the scar tissue (adhesions) were removed .. it will unfortunately form again, but it could take years for that to occur. Taking birth control to reduce the frequency of your periods will help prevent it from recurring. Not meaning to add any additional worry to your plate.. just wanting you to be aware of this.

Rest well and keep us posted on how you recovery over the next few weeks.
Tessa

Hi Angelina,
I'm sorry had surgery, but am glad you're feeling better. Try to get some rest. You deserve it. Take care.