RSD Spread
 

Well so much for a happy new year. My pm drs NP and new rheumatologist both said that they believe I have rsd spread. Rheumatoid was ruled out last week. My rhuem dr noticed the excessive hair growth on both of my arms. I noticed them about a month ago and was going to ask my pm dr on my next med check, but saw her first and she said it was probably rsd spread. I have had burning in my rsd wrist and my other wrist and both feet for the past few months and limited range of motion in my left wrist and right hip lately. The spread has gone down my right hip, leg, knee, ankle, foot and toes and to my left foot, toes, ankle, calf and hip. I have burning, redness, shiny skin on my left foot, swelling, limited rom, and excessive hair growth on both of my arms. I have osteopenia in my right hip, osteopersis in my both hips and dengerative disc disease in three spots on my lower back and neck per xrays my rheum took last week. I'm getting an MRI this week so she can check further. Tomorrow I go to my Gastroendo dr to see why my stomach is so bad. I already cancelled once because of fear of an endoscopy and what she may find, but I have to go because I can't eat too much without being nauseas. Hopefully it's just the gallstones and gallbladder that need to come out. Then I have to make an appt with podiatrist to check on the bone spur in my left foot. And I just noticed last night after feeling pain in my gums that I have another cracked tooth. This time it's the front one. And to top it off, I accidentally hit my head on a shelf in my deceased Great Aunt's house while cleaning out her closets and I have a really bad headache now so I'm contemplating whether or not to go to the dr to check for a concussion. (Like it's not bad enough to have go to her house knowing I will never see her again.) I'm sorry I'm whining alot, I just needed to vent. I know some of you are worse off then me, but the rsd spread is scaring the heck out of me. And when I told the NP at my pm drs office last week about what she thought, she said she thought I probably have spread too but to wait until spring (when it's warmer out) for that. I can't wait for my pm dr to come back from vaca so I can ask him. I really didn't care for her response. Why would I want to wait. It may spread more by then. Well, I see him next month so hopefully he'll have a better answer. In the meantime, I'm trying to take things a day at a time, keep my emergency rsd flare kit and list nearby, and pray a lot. Thanks again for listening to me whine. Sorry again for complaining. I hope you are all having a better year then me. And hopefully things will get better for me too as long as I hold onto my faith. Take care.:)
PS: My rheum told me that she thought fentonol patches (sp?) might be better than percocet for long term chronic pain like rsd. I was wondering if anyone has tried the patches and/or percocet and which one they think helps more with rsd pain. Also what side effects they may have. I told my NP at the pm drs office last week I wanted to try weaning of my percocets anyway because of their side effects and brain fog, and she said to wait until spring for that too. I think I'm going to just see my pm dr from now on and ask him what he thinks, but any advice that any of you may have would be greatly appreciated. Thanks again for listening.

Renee,
It's perfectly o.k. to whine here. i think we've all done it.

I'm fearing spread as well to my foot. Like Vrae I have cold RSD/CRPS2 too.

I wish I had advice on patches, I have never tried them or been given the option to by my P.M. Dr. Right now, I'm relying on a few meds. & nerve blocks.
If you can, I think weaning off the percocet is a good idea if there's an alternative that works for you.

Thanks AZ-Di,
I have CRPS I. I know that it's not the same as CRPS II, but I do have coldness in my initial site which is my right wrist, hand and and fingers, but not really anywhere else. I'm sorry you may have spread too. I will pray that it's not though.
I think I am going to try to wean of the percs too if I can. I know I'm paranoid by nature, but I can't help but feel that the drs want me to stay on it to make money off of me, because they make me come in every month for an office visit (1 1/2 drive to and from there) for med checks on the percs which costs me more money and I have to give urine tests every few months to confirm I'm taking them and the lab tests also cost money. I"ll check with my pm dr next month and if I don't like what he says, I may start looking for a new pm dr. I thought I could trust my pm drs, but the longer I see them, the more doubts I am starting to have about them. Thanks for your advice. Take care.
From your friend, Renee.

Hi Renee, I'm sorry you are having such a lot of spread...it is very scary stuff, and talking about that isn't whining ;)

I've got cold CRPS too, although I get my fair share of burning too :rolleyes:, and mine has spread from the original site in my left knee, to my whole left side, and my right foot and hand. Only recently it's spread across into my left breast. That's a barrel of laughs...

I don't know. It's impossible not to panic a bit Renee, it's perfectly understandable. I try to live day to day and not think too far ahead. Looking ahead seems pretty scary at times!

Take care,

Bram.

Sorry to hear Renee...
I know all to well how scarry spreading can be. I wish you well in your battles and that we all find comfort and relief...

So sorry you are dealing with spread on top of all else that you are dealing with Renee. This is the place to vent and whine....most of us have done a bit of that lately (present company included :rolleyes:).

I am allergic to percocet. I tried the fentanyl patches and you'll never believe this....I had an allergic reaction to them too :( It's a shocker, I know. I would give them a try if I were you, I have read on here that some do use them and they are very helpful. I would try anything at this point...well most anything. I really hate that only getting 30 days worth of meds and having to go back monthly for a refill and a drug test. I refused to go to one PM doctor because the way their drug policy was written, made me feel like I was a junkie or something. Bad people ruin it for the good people. I can't tolerate much so I do not take much. I have been taking demerol when I get to a point that I just can't take the pain any longer. It gives me a bad headache and makes me nauseous, so I have to take promethazine with it.

Anyway, I hope you can get some answers from you drs soon...and that you can get some relief!

Nanc
:hug:

Renee - so sorry this scary stuff is happening to you. NO you are not whining. You are always so sweet to others on this forum, you deserve to vent a bit. I have cold CRPS II, similar to Vrae. I was on a Fentanyl patch for 2 years. It is a powerful narcotic. I came off it because of the side effects and I wasn't convinced it was helping a whole lot. I experienced constipation, brain fog & short term memory loss and withdrawal symptoms on patch change days (usually every 3rd day). And, as far as the spread goes, I am terrified of spread so don't think you are whining!! Be well, Lottie

I wanted to thank all of you for your caring and helpful advice on rsd spread and fentanyl patches. I am really nervous about the spread, but am more scared about the fact that my pm group doesn't seem to be treating it right away. I don't have many pm drs to choose from in this area, but will have to do my research and see if I can find another one. And as for the fentanyl, I don't know if I want to try that either. I sort of want to wean off narcotics. I didn't know that was one of them. I don't know if I can do this with the increased spread and pain I have, but want to try to at least take less. I have to compare the two with my pm dr if I go back to him, and also look into the longer acting percs (if they have one, I think someone told me that there was, but I'm not sure. my memory is so bad these days). Maybe I can take less of percs if I take a time released one instead. My neurologist as well as some of you here have thought I was taking too many pills. My neurologist and gp have also recently said I should try to wean off the percs, xanax and neurontin too if I can. I'm going to try. My pm dr and pscyhiatrist said what I'm taking is okay. It's so confusing, but I can't help but feel that all the meds I'm taking are taking a toll on my stomach. I have to see my Gastroendrocronologist (sp?) today because of the terrible stomach pains that I have. I was up half the night again with stomach pain. I felt so nauseas. I wanted to trust my pm drs, but now I just don't know if I do anymore. Anyway, I'll see what my gastro dr today thinks is going on with my stomach. I'm soooo scared. I don't want to go and it's soooo cold out, but I can't cancel again. I have to face my fears. Thanks again for all of your support. I hope you all have a blessed day. Sincerely, Renee.

Hi everyone. I hope you're all doing okay. I hope you don't mind if I vent again but I feel like crap and am having a meltdown. I am also having a hot flash from my surgical menopause, as we speak. Lucky me. Well, I went to my gastro dr yesterday finally and she wants me to get bloodwork, an ultrasound on my stomach, an endoscopy and the "other" scopy (I know TMI). I am getting the first two things done next week. The endo and "other"scopy are going to be done in March. I'm so stressed out. I don't want any more tests and almost told her to forget about it, until I was hit with a stomach attack last night again. I was up half the night with severe nausea and stomach pain. I almost had my husband take me to the ER but it started to subside after I drank some milk and put a heating pad on my stomach. I have been laying off the advil because my dr said that it could be irritating my stomach. (I know that some of you have already warned me about all the meds I'm taking and I wish I listened to you when you did.) Instead I trusted my pm drs who I think have steered me wrong or I wouldn't be in this position now. I'm sorry I didn't listen to you guys when I had the chance. Hopefully my tests won't have any complications and they won't find anything serious. My dr seemed to think it might be the gallstones I have. She thinks I may even have an ulcer. I think she was surprised that the ER I went to last year didn't take my gallstones out when they first saw them. I wonder the same thing. But again I trusted the ER docs and sorta regret it now. I really liked this dr. And she told me some things I didn't know. Like that taking Advil and using Voltaren Gel at the same time can cause ulcers. I don't know why my other docs never told me this. Also, she told me that all the advil I took could cause ulcers to the stomach. I knew advil wasn't good but my docs told me it was okay. Also she felt that all the percs I take can be hard on the stomach. I knew this too, but again my pm doc said that I didn't take a high enough dosage to cause damage to my organs. I think I am going to really have to find a new pm dr. My gastro dr is going to check my thyroid, and stomach and the "other" area for anything suspicious. Anyway, I still have to go for an MRI on my hips because I can barely walk from the pain I have in them. Especially with this cold weather. I feel so overwhelmed. It's just one thing after another. I know alot of you have it worse than me, and that I shouldn't complain, but I'm not a strong person by nature and I'm scared. I feel like my body has been slowly falling apart ever since I've gotten rsd. I want to see my son graduate college. I've got a few more months to go before he does. I want to see him get married and have children of his own. I'm so afraid that this darn thing is going to make that impossible. I hope I'm wrong. If it's okay with you, I could sure use more pictures of beautiful scenes. Vrae and Tessa, you take beautiful pictures. And Bram, I'm breaking out my RSD flare kit because I'm starting to get a flare again from stress. Nanc, AZDi, SloRian, Tos, Kevscar, Heidi, Catra, Deb from Georgia and everyone else here (I'm sorry if I didn't list all of you but my memory is slipping again) I think you're all great. And you all make me smile and laugh. I kept thinking of the Muppetry last night when I was stressing out and it made me laugh. I need more MUPPETRY PLEASE !!! Thanks for listening and take good care of yourselves because you are all very special people. I'm so blessed have you as friends. Sincerely, Renee.

Hey Renee! Sorry you had such a rough night last night. Do you have a good PCP? (Sorry, I can't remember) I ask this because I do have a great one. She is the one who manages all medications for me. I run everything that is offered as treatment, meds or recommendations by other doctors by her. I trust her the most. Like when my PM dr recommended the pain pump, she said no way was that a good idea for me because of my allergies...what would they even put in it? Since you are getting mixed info from your various drs, it would be great if you had that one primary dr to sift thru it all and advise you better.

I think some of those tests are necessary. You need to find out what is going on. If you have an ulcer, you need to know so it can be treated. I had ulcers years ago and they healed up. Pain and other medications can be so harsh on your stomach and other organs. You do not have to be on a mega dose for the irritation and damage to start. Everyone is different in how they react to things. You are moving in the right direction. Keep your chin up!

Keep us posted on the tests, etc.

Wishing you the best...
Nanc :hug:

Hey Renee :) I'm so sorry you've got all that to deal with at the moment, that stomach pain must've really scary, and of course you're stressed out worrying... It's a viscious circle.

I agree that you need to get some of these things checked out, although I completely sympathise with you not wanting to have them. You need to know what's causing all the pain, and at least the tests will rule out some stuff. You do need to try and de-stress yourself a bit though if you can, because all this stress will be making everything worse for you.

Don't beat yourself up about the meds thing. We all are different, and have to work things out the best we can. What works for one of us might not work for another - you and your docs have to work out your treatment in the end. I'm sorry your docs might not have been being as careful as they should. Hopefully you can get that sideof things sorted soon.

Take care Renee,

Bram.

Ok I've been off Advil for almost two days now. I still feel nauseas, but not as bad as before. I ate chocolate and chuckles last night too which is a big no no for my stomach especially if I have an ulcer or gallbladder attack, but I really love them so much. I didn't love the nausea I felt all night from them though. I'm hurting more without the Advil because of my osteoarthritis and the cold weather, but am trying to take it slow and stay off the advil as long as possible. Next will be reducing percs and zoloft. I hope it helps and that it's not too late for my stomach to get better. Hopefully with the help of the pm dr that I like, I can handle the rsd pain or maybe it will go into remission. I do believe in miracles. Thanks for listening to me vent again. I hope you all have a blessed day. With love, Renee.

Hello Renee,

I am sorry you are having such a tough time!! Don't worry many of has probably had melt downs at one time or another, that is normal under the circumstances.

Try not to stress to much about your upcoming tests just because they are 'looking' doesn't mean there will be anything to find..yes optimism is in my blood ;) little story along those lines.. my father-in-law had been having issues for months with his GI/Colon and he isn't the type of person to ever mention a thing unless it is bad. So, after his first doctor appointment they told him he had a hernia and that his gallbladder needed to be removed. He was actually ecstatic because his guts were full of cancer.. then they did some blood work and other testing and warned him they were highly suspicious of pancreatic cancer. We were all worried sick especially because his Dad died from that. So while awaiting for the CT scan that was a week away, he and his wife were literally worried sick. To make a long story short after his CT scan the next doctor said he didn't have a hernia (I still find it odd how that could be misdiagnosed) and his gallbladder was fine, and most importantly NO cancer!! All of his pain was from diverticulitis for which he had been dealing with for years, it caused an infection that caused the worsening of symptoms and larger area of pain. All that worry and stress for nothing. The take away from that story is... worry will only add to your pain and harm your mind.. try to tuck your worry away, what will be will be.. but until then you don't have to fight against a ghost. I hope that made sense. This is of course easier said than done, please try for your own sanity.

Ya' know I was thinking.. with CRPS GI/Pelvic/Adominal issues are known issues. As I understand it our stomach can slow down the process by which it digests food (very simple description) which can cause many problems including abdominal pain and nausea. Medications only add to this slowing. I don't know if they are testing you for that along with your other tests but, it might be worth bringing up to your doctor.

In another post you mentioned Fentynal (sp?) patches. I can't comment on that one but I can comment on the Butrans patch - this has helped me greatly in terms of less stomach problems from pills and it does help with some of my pain symptoms. I have also noticed less irritation/agitation that was clearly caused by pain.. my husband is thankful for that ;) Giving your stomach a rest may help you between now and your testing in March, possibly.

Sometimes it is harder to tackle all the pain and effects of pain as a whole. I have found that it is easier to work with my doctors to tackle things more individually. For instances sleep deprivation is a huge problem because it reduces your ability to cope with pain that you could otherwise cope with better, it adds to depression and agitation with yourself and others, it makes our brain fog and ability to concentrate even more difficult etc., So addressing sleep would seem a good place to start since that alone would trickle down and help some of the other issues. My doctor gave me a "counter" that I was to touch every time I awoke due to pain or other reasons during my sleep. I was amazed as was my husband that in 6 hrs of sleep I was waking between 16-24 times. This confirmed many of my issues were being exponentially increased due to lack of sleep. So we looked at my meds and one thing I was doing was taking the amytriptilyne at bedtime instead of several hours before. By taking it so late it didn't have a chance to start working until half of my sleep time was already over. I've only switched dosing times for 2 days and already I've noticed a difference.

As far as I know there isn't any medication or treatment that will eliminate or reduce all of our symptoms at once. Maybe if you can isolate the ones that cause you the most grief and focus on how those can be relieved (even if only a little bit) it might give you a little more hope and cause less stress while trying.

Regarding osteopenia/osteoporosis and arthritis - other than advil there are other things you could try that might not affect your stomach as much. Pool therapy would be one thing. Celebrex is also one that helps with the deep bone pain of CRPS as well as arthritic pain and there are others. Weight bearing is the best for all 3 issues plus Vitamin D3 and calcium. Have you tried taking joint supplements? Just thinking out loud here.

One day, one hour or even just 15 minutes at a time..

Hi Tessa. Thanks for all of your great advice. I am going to check with my gastro dr about my digestive problems that rsd and the meds are causing and have them do tests for that.
I will also ask my pm dr about Butran patches. I really want to get off of the percocets. They are making my stomach hurt alot now, and are also making me irritable. I think I'm addicted to them and I don't want to be addicted to anything. I'll also ask if they can adjust my meds so that I sleep better at night. My rsd and stomach hurt more at night and the pain and nausea keep me up most of the night. It doesn't help to not be able to sleep that's for sure. And when I do sleep for a short while I am woken up by pain and nausea again. I'm going to ask my pm dr to try to put me on less and different meds and the butran patches. I want to get off the advil and percs and zoloft because of the affect they are having on my stomach. I also want to tell my pm dr that voltaren gel and neurontin can cause ulcers per my gastro dr, and then ask him if there is something else I can take for that too. I am going to get an MRI next week too on my hips and back to further investigate my osteopenia and osteoperosis. I am having alot of pain and trouble walking because of them. I am going to go back to beginners water aerobics. That did help, but I stopped when I had my two endometriosis surgeries and never went back. There is a handicapped van that will drive me to the local YMCA to do this so I am going to sign up. I am also going to start taking joint supplements. That's a good idea too. I already take Vit D (50,000 IU once a week) to get my vit D level up so that I can take calcium for my osteopenia. My vit D level was a 9 then a 19 and is now a 33. My dr wants it up to 50. I'm heading in the right direction! I did try celebrex before I had rsd for arthritis, but it didn't seem to help much. But I'll ask my rheum if I could try it again. Maybe now if might help. And I've almost made it another day (day 2) without advil. It's hard on my joints and I'm stiff and sore, but my stomach is starting to feel better. Hopefully I can wean off advil and percs and zoloft all together. I may need something for the rsd pain and anxiety, but maybe the butran patch will help me with that.
Thanks again Tessa for all of you helpful advice. I really appreciate it. You are so kind and I feel very blessed to have you and everyone else on this forum to turn to for caring and support. And I will try to take things one day at a time. I think that is a good idea too. If I think any further than that, I think I'll be too overwhelmed.
Well, thanks again for caring so much and I hope you and everyone else are doing okay. My thoughts and prayers are with you always. With love, Renee.

Hi Nanc,
If my PCP will do it, I think I will ask him to be in charge of all my meds and check ups. He is not too knowledgeable on rsd and seems to think I'm overreacting sometimes, but he always listens to me and tries to help. I like and trust him.He is also only five minutes away from my home. Hopefully he can help me so I can ditch my pm dr. Thanks for the great advice. I hope you are feeling better and your wounds are healing quickly. Thanks again for your kindness and caring.
From your friend, Renee.

Renee, I am so sorry you are having so many problems. I am going to have to have a scope done as well and it really scares me. I am having rectal bleeding every day for over a month now. I am burning in many areas my eyes lids and face are the worse and that is so scarey. I am also afraid of spread from the needles needed from the scope as well as the cause of bleeding. My neurontin has been increased to 1800 mg. and I am still burning. I hope the weather is the cause of worsening symptoms for everyone lately. I am praying for you. You have helped me so much. I haven't been on here as much due to work. I just read your post tonight. Please keep us informed. I hope they find relief or a cure for us soon ,Jan

Hi Jan,
Thank you for your kind words and prayers. I will pray too that you are going to feel better soon and that your tests go smoothly and everything is okay. I am scared too of the procedures as well as waiting for results. I may get a second opinion because even though my gastro dr said she knew what rsd was, I'm not so sure she meant it. She had that look on your face like she didn't know. I liked her though and will still get the tests and surgery done but I want to make sure that they are extra careful with the needles and procedures because I have rsd. I'm scared of needles and punctures because I don't want spread. I will also get vitamin C to help. I have to get this done soon though, because I was up all last night with nausea again and in bed all day today with nausea. I'm not vomiting, but have only been able to eat saltine crackers, plain sliced bread, diet coke and milk. I am on day three with no advil and I have also stopped taking dexilant for nausea, because my Gastro dr said that can cause stomach problems too if combined with neuronten. I can't believe my other drs didn't tell me this! Anyway, thanks again to all of you for all of your caring and support and I will pray that we will all be cured from rsd someday. Jan, I will also say a special prayer for you in hopes that you will feel better soon too.
With Love, Renee.