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NeuroTalk Support Groups (https://www.neurotalk.org/)
-   Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)
-   -   Please help me! (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/194777-please-help.html)

RSD ME 09-28-2013 11:30 AM
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.

zookester 09-28-2013 11:50 AM
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

RSD ME 09-28-2013 12:28 PM
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.

RSD ME 09-28-2013 04:26 PM
Hi Angelina, I hope your're okay and having a better day and hope you have a better night. Take Care.

Angelina55 09-28-2013 08:22 PM
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.

Quote:
Originally Posted by zookester (Post 1018191)
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

Angelina55 09-28-2013 08:24 PM
I don't think they did check my gall bladder.

Quote:
Originally Posted by Allanira (Post 1018151)
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:

RSD ME 09-28-2013 09:10 PM
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.

zookester 09-28-2013 09:10 PM
Quote:
Originally Posted by Angelina55 (Post 1018324)
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.
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?

Angelina55 09-29-2013 10:35 PM
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.


Quote:
Originally Posted by RSD RENEE (Post 1018332)
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.

Angelina55 09-29-2013 10:42 PM
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!




Quote:
Originally Posted by zookester (Post 1018333)
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?


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