I cant think how to help myself...please advise me
 

Hello everyone...I cant think and need help!

i hope you are feeling good today!
i would like your help please....

i go to a new pain clinic next week because my primary care says i am too sick for him to take good care of me.

so i am now wearing a 50mgr fentanyl patch
Methadone 20 mgrs twice a day
4mg Dilaudid 4 times a day.

i dont know how much he fentanyl is doing for me, but i know i get relief from the methadone and dilaudid.

i was taking neurotin for 4 months 1200 mgrs a day. it helped but made me sleepy and it put weight on me. so i went off of it about 3 months ago, but since then my pain is going up. i tried Lyrica but didnt get any relief from it.

2 weeks ago i wound up in the hospital for 4 days...my pain was out of control at home and i was having other health issues. they were giving me dilaudid in the hospital by IV ..when i was discharged is when they put me on the dilaudid for home use.

Im scared and feeling a bit helpless. my abdomen is swelled more it could be up to 90lbs now its horrible to deal with, and it is more painful than it had been.
i started taking an herb called Horse Chestnut extract, which is an anti-inflammatory, often used for lymphedema patients, but i havent noticed any change yet. I cant take Ketermine because i did years ago and and bad reactions to it.
Percocet doesnt work for me..I didnt like Oxycontin and how it made me feel. even though im wearing it, i dont think i am getting much help from the Fentanyl patch.

i think the methadone and dilaudid does ok but im never completely pain free...

Heres my question:
if you have bad swelling like me...what do you do for relief or to reduce it?

also what medications do you take that work to take away your pain?

does anyone live pain free?

I go to the new doctor April 12th and would like to have new ideas for different meds or treatments to help me.

sorry this was long....
Lori

Have the drs / hospital checked the swelling to be sure nothing else that might be treatable is causing it?
like - X rays, sonogram/ultrasound, MRI/CT scans?? full blood work up?

Yes they did all that in the hospital and a colonoscopy and an ultrasound...all was negative. my swelling all started 6 years ago after gallbladder surgery...then 2 years later a plastic surgeon said lets cut off the swollen tissue and they cut me hip to hip taking off 25lbs..then i got real sick! we didnt know i had rsd until 7 months ago! the 2nd surgery was horrible..i went code blue, they brought me back and then i got high bloood pressure, acid reflux, sleep apnea, gasteoparesis, my period stopped and the swelling came back more than double in 3 months after the surgery.

nothing so far will stop the swelling, so thats why i just bought the Horse Chestnut extract herb to see if it will help.

thank you for reading this and thinking about me!
Lori

Lori,
I think it was here that I read that methadone and fentanol don't mix?
If the fentanol isn't helping why take it, this is powerful medicine and the side effects can be deadly.
I don't like to hear you fooling around with extracts either.

What you need is a good neurologist who KNOWS RSD!
I cringe when I hear pain management docs.

I think, that this is your first highest priority, to find a good, experienced rsd doctor, usually a neurologist. Try a University hospital nearby or in the nearest city, call the Chief of Neurology!! Don't fool around, start at the top!
I wish you the best.
Also,, I don't know of a time, that I'm completely pain free, or, even close.

Take good care, by getting good care!

Pete

It is probably very worthwhile to try to get into to see Dr. Schwartzman at Drexel. There is a long wait, but it certainly doesn't hurt to get on the list. In the meantime, Pete has a terrific doc in Fort Washington. Northern Va. isn't that far away from SE Pa., you could make the trip in one day. Or - find out which are the good teaching hospitals in DC, they might include Georgetown and George Washington (GWU) and make some phone calls to see if there are any RSD specailists on their staff. Do you have a support group in your area? You may want to contact the leader of the group for advice.

I have tried not to settle for anything less than the very best in the medical field since I became sick. It meant traveling from RI to Boston for my treatments when I was first diagnosed, and then to Marlton, NJ for my first 22 ketamine infusions. You have indicated that you have a supportive spouse - he will probably be relieved to get you to a decent place where they know what they are doing.

Good luck to you. XOXOX Sandy

Thank you Pete and Sandy

Thank you both. I wish I had more energy both physical and mental. I know you understand what i mean. I am feeling more and more beat down by this illness. Same routine everyday with no hope of changing for the better in my future.

I will call around or a Neurologist. That is not something that I have done yet. I saw a neurologist about 2 years ago when i was being tested for MS which that God I don't have...but at that time RSD was not suggested. I diagnosed myself and then when to my primary care and said to him i think i have this ...do you think i have this and he said definitely...so that's how i got here.

Yesterday my pain was creeping up again so i took neurotin again and it helped calm the burning feeling down. i didn't want to take it because of the side affects, but i didn't know what else to do and i don't want to go back to the hospital.

Sandy, I'm sorry you aren't ever out of pain. I know you have dealt with this for years...and i hoped that you had found a good mixture of medication to make you comfortable. I have a lot of worries on my plate and i know that doesn't help me either. I may lose my job if i cant get my sales up very soon! I am broke and have to go to food banks and churches for food each week. Hubby cant work because i cant be left alone. this is just not the life i expected! If i lose my job, i will lose my apartment fast and i have no money to move. I worry that i might become homeless. I can apply for disability but it wont pay enough for me to stay in the apartment i am in. Being handicapped, i have to live on a first floor apartment, this one i live in fits me perfect. If i can get my sales up I will be okay. I sell office supplies from home to the government. The govt hasn't approved the budget yet so people can buy. I use to be one of the top producing women on the east coast before i got sick. then i lost my job of 20 years...and was blessed to find this one 2 years ago...my boss has been very supportive...but my sales just haven't grown enough. I wasn't doing it right but now i know what to do...so i just pray for more time to get well and do better.

RSD has stolen SO much from me! I apologize for rambling about my life. I know everyone has their own problems that RSD has caused. I use to be very confident, independent and strong. My memory was great, now its terrible! Some one some where has to be working on this horrible illness for us!
again, im sorry for rambling!
Lori

Lori,

I have been reading your post since yesterday and my heart truly goes out to you. I just would like to ask one question. What is the reason for the growth? Do they say it is from RSD or from the gallbaldder surgery or a combination of both? I quess I'm just not making the connection. I have had RSD for 7 years and I have never heard of a large growth such as yours being assoiciated with RSD. I wonder if it's something else. Honestley the first thing that comes to mind in Neuro.......Fibrois. I"ll get the correct spelling for you. It's a disorder where people get large growths. I have seen in on Discovery Health.

You spoke about going on disability. You would probably get it quickly and you could still work. You are allowed to make about $1000 a month without having you disability check reduced. This woldu also give you medicare and many other benefits as a disabled individual. And then in the future if things improve and you want to return to ft work you can give it up.

Try and keep positive.

Gabbycakes

PS I'll be back with that spelling. It's spelled "neurofibromatosis".

Lori,
I'm sorry to hear that you are still experiencing such high pain levels. Are you taking anything in the NSAID family of medicine to help with imflamation? The only other suggestion that I can make is changing your diet to the suggested CRPS diet that can be found at www.rsdrx.com. I started this diet 7 weeks ago as I to was in unbearable pain and was willing to try anything so I gave it a chance and I have been feeling alot better since the diet change. If you look up the diet, it only has two choices for meat and that was chicken and seafood. I have been eating mainly seafood because the seafood has natural anti-inflammation agents and that is what I think is helping the most. This diet has helped me not to have so many flares (haven't had one since the end of February). It is far from a cure but it has stabilized my system and for once I didn't have to increase my meds due to the progression of this disease. Keep me posted as to how you are doing as you will be in my thoughts.
Sarah

Lori,

I read a little bit further on and this type of condition,"neurofibromytosis" comes on by a "disturbance in the Central Nervous System". I found that really interesting since RSD is a Central Nervous System Disorder.

I hope this helps. Keep your positive attidude it helps us also.

Gabbycakes

I would get tested for Candida. This can really swell the abdomen (mostly with unpassed gas).

Other major medical issues can cause this severe swelling.

One is lymphoma. And when it is in the abdomen, people often look pregnant.

Others are liver problems and congestive heart failure.

Some people do have edema from opiates, but not to the extent you do. So I think it is really important to get a good medical evaluation for this swelling of the abdomen.

I hope you find your answer soon.

thank you Gabby, Sarah and Mrs D

Heres what happened..when i had the gallbladder surgery they tried to do laproscopic but it didnt work so they had to cut me open about 10 inches. in this area is where all the swelling started and pain immediately following surgery. they kept treating me as if i had an infection..but i didnt so i kept swelling. one night the swelling got so bad that i couldnt breathe. i went to the ER again and there was a doctor who said i think you are having an allergic reaction to something...take 50mgr of prednisone for 5 days then taper it off. i am asthmatic and have had prednisone ,many times so no big deal. so the next day the swelling started comming off in buckets! I lost 10lbs of fluid on ech day for the first 3 days...then i tapered off the prednisone and on day 10 the swelling started to come back! so i went back up on the prednisone and it seemed like 30 mgrs kep the swelling from going up past 30lbs.

well i kept feeling very sick besides the swelling. in November 2006 a plastic surgeon said lets cut off all the swollen tissue and see if that doesn't solve the problem. so they cut me hip to hip taking off 25lbs of tissue. then i got deathly ill! I went code blue after the surgery..they brought me back to life. then right after the surgery, my body went haywire. i became diabetic, i got gasteoparesis, sleep apnea, high blood pressure, and my period stopped. i was weak and it took me 2 years to recover from the surgery. the only thing that has changed is that i dont have high blood pressure now..but i have all the rest.

MrsD i am familir with yeast problems and i do have one..i am taking Nystatin Oral right now because i am on a antibiotic for a bladder infection and i have thrush in my mouth from it...so i am battling that.

the swelling is not a lump...it is in each cell...so there isnt a pool of swelling..i have taken lasix but it doesnt help this kind of swelling because it isnt vascular...so i am taking imuran and prednisone to try to keep the swelling down but it isnt working right now i am swelling more and my doctor and no doctors i have been to know how to stop it or reduce it! it is debilitating. the swelling caused me to have a herniated disc in my lower back 2 years ago..so i deal with that on top of everything else.

Please dont get me wrong...i am not writing this looking for ptity..we all have our problems here, and each person is important and have their own terrible pain. I am writing this looking for new ideas of how to help myself. i hate siting here getting worse with nothing to do to help myself. am i just supposed to swell until i die? There has to be someone some where that can help me.

Thank you for your thoughts and prayers.
Lori

Well, when the lymph nodes in the abdomen become blocked as in Lymphoma, all the lymph fluid backs up into the tissues. The lymph nodes are deep in the body and when this edema happens cannot be felt sometimes

Have you had a Cat scan recently of your abdomen?

Whatever is wrong, does sound frightful, and difficult to manage.

I hope your doctor finds answers for you, at this upcoming appointment.

The Candida can be awful... so I hope the medication helps that.

Thank you MrsD

i cant fit in a catscan right now...Im too big and heavy.. they did an ultra sound and didnt see anything. When i have had cat scans in the past none of the lymph nodes were blocked. the best way i can explain it is that from the incisions i have had on my abdomen, my body thinks there is an infection and keeps reacting sending white blood cells to fix it but theres nothing to ix. its like my nerves that got cut are on full alert...like something is happening.

im scared...that one day it will crush me, i have to use both arms and hands to lift my abdomen to move or roll over. its pitted edema..i can press my entire hand deep to leave an imprint ...its not good. i keep looking for help. the other day it was hurting terrible and i put a heating pad on it...now i dont have feeling on the outside skin on some places on my stomach from the gallbladder surgery...the heating pad made a big blister on me and it popped and scabbed over...never happened before, so now i have to be very careful that i dnt get an infection. Im SO tired of dealing with this as many of us RSD people are. all i can do is live in the moment and get through this day in hopes that there will be more answers tomorrow. Someone some where must be doing more research on this!
sigh...
Thank you for listening and thinking bout me, you are very very kind!