Hi everyone
 

My name is Jen. I am 36 years old. I live near Gainesville FL. I was finally diagnosed with RSD in July 2014, but have had all the symptoms for 7 years. It has spread throughout my entire body. I have several seizures a day. I have four beautiful children and a loving husband of almost 15 years. I am confined to my bed or chair. I am unable to take care of my basic needs. I have been searching for a doctor that doesn't treat me like a pain pill seeking addict. I take 1,800 mgs of Gabapentin for the seizures daily along with 50mg Zoloft for the depression that has come with this illness. I also take two 10mg percocet a day. I also take 1mg Klonopin three times a day for the severe spasms. This is how I do it, and I am so anxious to hear any thoughts of how I could do this differently. In the mornings I am unable to move. My husband sets an alarm for 5:30 am and gives me one gabapentin, one klonopin, and one percocet. He makes me a light breakfast so I don't take all of that on an empty stomach. I then put on a playlist of peaceful music to listen to as he rubs my back, hands, feet, arms leg, whatever area is hurting particularly bad. At 6:15 once my medicine has taken the edge off my pain he wakes up our 4 children for school. I take my medicine that early so they can see the best me they can see (one not crying in pain.) He helps the kids get off to school, and he leaves for work. I have a very large extended family and a large church family who by 7:30am start taking shifts with me because I have seizures and often have a very hard time breathing. I can't move around at all. I try to listen to uplifting messages and music, and I try to be as optimistic as possible throughout the day. I try to have gratitude because I realize how fortunate and blessed I am. By 11:30 my pain meds have worn off and I am near tears in pain. I hold off taking my other percocet until 1:45 so I can be in the best shape I can be for the children when they get off the bus at 3:15. The problem is the pain comes back with a vengence and by the evening I am toast. I go to bed early exhausted from the days pain. I have tried splitting the percocet in half, but is useless. Does anyone have any thoughts on other ways of Pain Management? Thanks in advance :)

hi stillsmiling. i'm sorry you have rsd. i've had it for almost four years and are on some of the meds you are on. i was stable on them for a few years but earlier this year i had to increase them. my pm dr works with me to help manage my pain. i hated increasing them, but couldn't take the increasing and constant rsd pain anymore.

my pm dr told me that trying to fight through the pain is worse then taking extra meds to help control the rsd pain. fighting through the pain makes the rsd pain worse. its a vicious cycle. thats not to say you're addicted to these meds. you've just gained a tolerance to them. when that happens you sometimes have to increase them if they aren't lasting long enough between the times you take them.

when this happens you should tell your pm dr so that he can adjust your meds. you may need more neurontin (gabapentin) which you can take up to 3600 mg daily if your dr approves of this. the same goes with percocet. you may need to have that increased too in combination with the gabapentin again under your drs approval and supervision.

as for zoloft, you may want to see a pm dr or pyschiatrist who can prescribe more of this if you feel more depressed from the increased pain as well as xanax for anxiety from the increased pain. 50mg zoloft is a very low dosage and can be increased also under a drs approval and supervision.

also advil also helps with the inflammation but check with your dr first on that too. i started taking low amounts of all these meds and as pain increased from rsd so did my meds per my drs approval and supervision. i tried fighting through the pain to not increase my meds, but that only makes rsd worse. if you have drs who can help you with meds to manage your pain so your not so uncomfortable then to me its worth doing.

yes there are side effects, and i tried to cut back at one point because of that, but the increased pain i experienced from rsd was far worse then the side effects i deal with from the meds. and you're not an addict if you take these meds and have to increase them. addiction is when you take these meds to get high. tolerance is when you increase these meds to help control chronic pain like rsd. a knowlegeable dr who knows rsd will know this to be true.

if you dr doesn't want to help you with that, you may want to check out another dr. but it sounds like they know how to treat rsd the right way. you just have to tell them that you are still having alot of pain and may need to increase your meds.

everyone who has rsd reacts differently to different procedures. along with meds, there are nerveblocks, accupuncture, ketamine infustions, calmare therapies, tens units, pt and what i will consider as a last recourse for fear of rsd spread and infection. is a spinal cord stimulator.

check out rsdhope and rsdsa online for more info on these procedures and drs in your area who treat rsd. everyone on this forum are also kind, caring supportive and have great advice to give. they have helped me deal with rsd by just being my friend, even when i'm cranky from the pain and meds

take care my friend and i will be keeping you in my thoughts. i hope your dr can help manage your pain better. don't give up hope. there are ways they can help you. take care and be well.

thank you
 

Thank you so much for your fast response. I am so grateful to have found this support group. My Dr. claims to be knowledgeable in RSD but refuses to increase my doses. He is my neurologist and insists on treating me for the pain because I have such severe seizures he said he wants to control both doses and doesn't think I should be seeing a PM doctor. I feel so trapped because there are so few Dr's in the area that I have found that know much at all about RSD. Hmmmmm he is not a nice person but I feel afraid to go anywhere else because all the doctors I have seen do not believe RSD can cause seizures. He is the first. I am just scared because I feel like I have so few options in my area and traveling is nearly impossible.

Has the dr talked to your family members, to confirm pain levels& status?, if he isn't 100% sure of the pain level you describe?
Is that the issue , or just that he will not up anyone dose no matter what??

Some people metabolize faster than others too, so naturally more meds or doses more often are needed for them.

Any timed release or long acting ER or CR tried?
What about anti depressant?
Often pairing that with pain meds makes the pain med work longer and better.
I read this long ago but I think it is still an option, but haven't seen it posted lately..


Are the seizures related to the RSD or a separate condition?

Did you find all of our useful sticky threads- in the upper section of this page -
http://neurotalk.psychcentral.com/forum21.html

You really don't need an increase of dosages most likely, just a better delivery system as Jomar has said above. Those that are looking for a high also want Immediate Release opiates, so asking for an Extended Release option should not raise a flag with your doc. It's not a bad idea to ideally have both, but if I could only have one I'd absolutely choose an ER option.

You might want to research Nucynta ER. It's one of the combo drugs that Jomar mentioned.

Hi Jen,

I am sorry you are going through so much. It is obvious you have a strong and beautiful family and you are a dedicated mother. Hold on to that and keep up the good work you do for yourself and for them.

On meds, I agree that people gain tolerance. This also goes for non-opiates. People will sometimes need to switch long time meds for new ones to get the same effect. Blood pressure meds or antidepressants, benzos that have worked for years can quit working and need trading out. The old tricyclics may be a an alternative to your Zoloft. I myself am taking nortryptiline now instead of gabapentin and have fewer side effects and better pain relief. Everyone is different and everyone's body changes with time. Your doctor must recognize this.

There are also alternatives on meds for muscle spasm. We have a doctor in my city who specializes in botox injections for muscle spasm. He treats many MS and other neuro patients with this for longer term relief without oral meds, perhaps allowing people to drop something that makes them foggy or simply isn't giving adequate relief. There are many options out there, medications like alpha blockers can provide a sympathetic blocking action if you are past the point or not interested in nerve block.

Hang in there, we are routing for you. Changing your regimen can be challenging and take several misses but ultimately be of benefit. Never settle to you have to!

Sending healing Love,
Littlepaw :hug:

DR.
 

My husband has been at every appt with me and has told him EVERYTHING. The Dr. has said, "I'm not going to get you strung out on unnecessary medications." My family member who is a Pharmacist has said that the Dr. does not understand that when there is a real level of pain, and when pain medicine is taken, it literally eats up all the pain and there is no "high." He has made it very clear he is NOT budging on any dosage increases. Not only is he not willing to change doses, I am not allowed to pick up my prescription for the percocet until the day it is due (office policy) not even post dated. Which every month causes a problem because I live 45 mins away and have to find a family member or a friend to go wait on the office door steps to get it, take it to the Pharmacy, have it filled and drive 45 mins home. All the while I am in dire straights. Also if my refill date happens to fall on certain days he is "out of the office" or on the weekend, well.... I am "just out of luck" did I mention he has the rudest office staff as well. Pretty frustrating. About the seizures- he said it's from RSD.

:)
 

Thank you so much for your kind words of encouragement. It is such a blessing to have a place to go where others are experiencing the same issues and understand. :)

Jen,

You are most welcome. I will keep you in my thoughts. I took the liberty of doing a search for Botox for muscle spasm in Gainesville, since I knew of the doctor here in Austin. UF Health has it listed on their Spine and Sport Intervention center page. I have found Physical Medicine/Rehabilition to be helpful for some things, especially local area pain. They have a different approach than anyone else and can perhaps offer alternative solutions than you've had. the Austin doc doing this is also PM&R. Just a thought....

Take care

Distances, and regulations for opiates make what you described a chore for many of us.

I understand he won't increase your dosages, but will he give you an ER form? You will get more relief and have less chance for a "high" that way. If not, perhaps you need to look for a doc closer to home that will be more reasonable.