[firegirl]

I have been feeling horrible (worse than usual), for about 3 weeks now. I am stuck in the wheelchair and cant leave the house. I have RSD in entire right arm, hand, shoulder, and right foot/ankle, stomach, & heart. Sometimes I am able to walk small distances when not i a flare. My doctor temporarily doubled my Oxycodone 30mg to 60 mg 3 times a day....also take Oxycontin 30mg 2x day, Xanax 2mg x3 day, Cymbalta 30mg, Seroquel 600mg, Lamictal 100mg, Vistaril 100mg, Soma 350mg, Treximet, Compazine 10mg, Phenergan, Marinol 40mg a day, Zofran 8mg Dilaudid 4 to 8mg. I've tried all the blocks, SCS, pain pumps, PT, OT, aquatics therapy, chiropractor, Dynatron STS (moved to TX for 5 months to try this), HBOT, and I'm sure more that I can't remember. I've been taking it very easy, but trying to move around what little bit I can. Also tried epsom salt baths. The pain is absolutely unbarable. My doc wanted to hospitalize me for 3 days to get the pain under control with IV meds. He couldnt find a department that would hospitalize me for pain control. So, I went to ER couple of days ago to just get temporary relief w/ IM dilaudid & Ativan. My doc wanted me to get the ER doc to give me a shot of Prednisone & he called me in a script for Prednisone. The ER doc disagreed with the Prednisone, so I didn't fill it. He told me to only take the oral Dilaudid when thing get real bad. I just feel like I am om way too many meds, but I need them all, DON'T KNOW WHAT TO DO....PLEASE HELP!!! I have tried ALOT of other meds with no luck & also have horrible problems with nausea & vomitting. I am also bipolar, and have problems with anxiety and migraines.

I am not sure what has been going on the last few days. Normally I can take al my meds together & not look or act doped up at all. Well...last few days I fall asleep eating, talking, smoking, & while doing all kinda stuff. Mom almost called 911 for me last night bc she thought I was gonna OD. She said i tried to light a cigarette 3 times in 30 min. & still couldnt do it. I was just way out of it & was talking jibberish. Not sure wy this is happening all of a sudden. Only med I just started taking again is Marinol & it never used to do that to me.

[RUReady]

Firegirl , Hello from your firefighter or ex firefighter friend I should say . Though once firefighting is in your blood you are forever one . I have the same type of problem you do with the drowsiness . With mine there seems to be no rhyme or reason just some days I can not get out of the fog . I will fall asleep while my wife is talking to me (that goes over real good) , or if at some place other than home I will have to find a corner and nod off . It does seem to effect me when my pain level is up (sometimes) or if I had gone a bit without my pain meds (sometimes). Sorry to hear you are having this problem but interested that it effects others the same . Take care !

[loretta]

Originally Posted by firegirl

I have been feeling horrible (worse than usual), for about 3 weeks now. I am stuck in the wheelchair and cant leave the house. I have RSD in entire right arm, hand, shoulder, and right foot/ankle, stomach, & heart. Sometimes I am able to walk small distances when not i a flare. My doctor temporarily doubled my Oxycodone 30mg to 60 mg 3 times a day....also take Oxycontin 30mg 2x day, Xanax 2mg x3 day, Cymbalta 30mg, Seroquel 600mg, Lamictal 100mg, Vistaril 100mg, Soma 350mg, Treximet, Compazine 10mg, Phenergan, Marinol 40mg a day, Zofran 8mg Dilaudid 4 to 8mg. I've tried all the blocks, SCS, pain pumps, PT, OT, aquatics therapy, chiropractor, Dynatron STS (moved to TX for 5 months to try this), HBOT, and I'm sure more that I can't remember. I've been taking it very easy, but trying to move around what little bit I can. Also tried epsom salt baths. The pain is absolutely unbarable. My doc wanted to hospitalize me for 3 days to get the pain under control with IV meds. He couldnt find a department that would hospitalize me for pain control. So, I went to ER couple of days ago to just get temporary relief w/ IM dilaudid & Ativan. My doc wanted me to get the ER doc to give me a shot of Prednisone & he called me in a script for Prednisone. The ER doc disagreed with the Prednisone, so I didn't fill it. He told me to only take the oral Dilaudid when thing get real bad. I just feel like I am om way too many meds, but I need them all, DON'T KNOW WHAT TO DO....PLEASE HELP!!! I have tried ALOT of other meds with no luck & also have horrible problems with nausea & vomitting. I am also bipolar, and have problems with anxiety and migraines.

I am not sure what has been going on the last few days. Normally I can take al my meds together & not look or act doped up at all. Well...last few days I fall asleep eating, talking, smoking, & while doing all kinda stuff. Mom almost called 911 for me last night bc she thought I was gonna OD. She said i tried to light a cigarette 3 times in 30 min. & still couldnt do it. I was just way out of it & was talking jibberish. Not sure wy this is happening all of a sudden. Only med I just started taking again is Marinol & it never used to do that to me.

Firegirl, I am so very very sorry you are going thru this intense pain. How long have you had RSD? Sounds like you have tried everything possible. How did you like the HBOT? Tried Ketamine infusions? Mine started with frozen shoulder following breast surgery 15 years ago. It is now full body and internal pelvic region, painful bumps in ears, scalp. Have had lesions, lung infections, hear issues, It's a painful thing to deal with dailey.
Do you trust your Dr.? Is he experienced with RSD-med interactions?
My Dr. of last 6 years is a neurologist, psychiatrist, and pharmacologist. He just did a 200 person trial study, which I was on, on seroquel xr. It was for fibromyalgia patients, which I also have. I had stopped sleeping on ambien cr. would stay awake all night till 6am. felt terrible. On the study, I was on 300 mg. started sleeping 10 hours. went down to 150 mg as felt druggy on 300.
still sleeping 10 hours. You are on a lot of different meds. I know it's important to know interactions. Are you sleeping at night? My Doc says it is extremely important to have restorative sleep.
There is a website rsdrx.com puzzles list Dr. Hooshmand in Florida practiced 40 years, specializing in RSD. he was against opiods. I Take vicodin-most I took was 6 pills 5/500 8 during a flare and now down to 4 pills-with most days 2 pills. Take lorazepam 4 mg a day 2 blood pressure meds and 120 mg cymbalta. So I've actually gone down in meds. I've been in a place where I've asked my Dr. to change my vicodin to something stronger and he was against it. He did up the lorazepam which actually helped me with my nerve pain more than vicodin. Also used to be on two anti-depressants. One double dosed and one triple dosed. Now on cymbalta. I do keep to a healthy anti-oxidant died-mainly vegetarian, have kept mobile, even though very difficult. Been thru at least 150 pt treatments and over 200 massage treatments. Had frozen shoulder on both shoulders. Have one hand that is crippled, like a claw-wrong diagnosis and late pt treatment. One time my toes were curling up and Dr. had me in pool every day exercising toes to counter the curl. In 4 months my toes were straight touching the ground. I also Trigeminal Nerve Disorder, a ruptured disc in my neck and terrible headaches
I'm not trying to make you feel bad, but fight as much as you can to keep mobile. Do you have RA also? I'm suspicious of having it-so getting tested.
I was walking with a cane last week
I read a post here on NT the other day and a person went to the Cleveland Clinic for RSD-very well known for RSD and they took her off all narcotics.
RSDSA , the national organization, has a place to put in your zip code and will give you support group closest to you and phone number of leader.
We can get names of Drs. etc. from local friends with RSD. Have you ever talked to your pharmacist about all your meds? I know some call large hospitals and ask for head of neurology dept. Ask about RSD. Have you seen a psychiatrist for help in coping with this monster. When I was diagnosed with full body or generalized 6 years ago, the neuro suggested I see a psych.
I knew he was right-I had 2 plus years of psychologist help when my parents died 30 years ago. and it really helped me.
I've read your posts and can tell you are a giving, caring person. My heart aches for you. I know meds are a personal decision-some don't take opiods, but I would say most of us do. I have never gone off- I usually take 2 in the morning-my worst time. We are all so different. The McGill Pain Index on a scale of 1-50 list RSD as 42-that is above amputation. So it is recognized by the medical community, those that know about it, as a very painful disorder.
Have you had a flare this long before? Please let us know how you are doing. Stay with us and maybe something someone says will be a big help to you. I enjoy your posts. One of your new friends, loretta with soft hugs

[SandyRI]

Dear Firegirl,

Just reading all those meds made my head spin. I'm so sorry for your pain. But more meds may be making your feel worse, not better. And it sounds like you may suspect that, by the way you worded your posting.

Have you considered ketamine infusions? Where do you live? Perhaps there is a clinic nearby where they are available.

Perhaps a consultation with a large teaching university pain clinic or city hospital can help you organize/streamline your meds and treatment plan.

Please take care. XOXOX Sandy

[Wilbyfree]

Dear Firegirl, I am so sorry your in so much pain and being stuck in a wheelchair unable to leave the house. That alone can be debilitating and miserable. I too have been stuck in a wheelchair for a couple of months and it is getting old. Also, I believe my pain has gotten much worse since the wheelchair. I just had this conversation with my husband about not being able to build any body strength. I wake up in the morning, (mornings are always bad for me) and the body pain (soreness) is terrible and then of course we have the nonforgiving RSD/causalgia to combat. I do force myself out of bed and crawl down the stairs to have a small breakfast and coffee before taking anything for pain.

I do concur with you, Sandy and Loretta, you should seek other alternatives for pain control. Just as an addition so you can balance out. Your body is not getting enough time to restore any of its natural rythms. I do meditation, visual imagery, (that is where you vision yourself healed and doing something you love to do, like walk, ride a horse, etc) healing music, I listen to the birds every morning, I crawl outside on the deck to sit for a minute, sometimes an hour, watch a funny movie, crochette, cook. Just a few things you can do from inside the house to help take your mind off of the pain. being constricted to the house you have to get creative. I am truly concerned for you, please try to challenge yourself, get help if you are not strong enough to do it on your own. I have cut my medication in half and found that the pain is about the same, so why poison our body. God Bless you, I will truly be praying for you.

Jeanie

[hope4thebest]

Hi Firegirl,
My heart goes out to you in having to take so many meds to make your day bearable It sounds like you need a re-evaluation of your meds, their interactions..you may need different doses, or a reduction in meds..or a different delivery system (pump), or ketamine infusions..
Have you thought of going to a different pain management doc for a consultation and a different perspective...

I am wondering if you have more than one doctor who may be prescribing meds without consulting eachother..
Firegirl, I too am so concerned about you and I hope there is someone in your life who can help you navigate toward unraveling your current situation and find more comfort.
I send you many many hugs
Hope4thebest

[finz]

As a former oncology and hospice nurse, I have to say......you medication line up makes NO SENSE to me.

"doubled my Oxycodone 30mg to 60 mg 3 times a day....also take Oxycontin 30mg 2x day"

Taking 180 mg of Oxycodone for break through pain med per day while only taking a long acting dose of Oxycontin total 60 mg per day is just plain bizarre. If you are taking Oxycontin 30 mg po twice a day, the breakthrough dose should be Oxycodone 5 to 10 mg every 4 hours prn. I'm not suggesting that you need less overall Oxycodone, but it seems to be set up all wrong. Normally, a knowledgable pain doc would prescribe more Oxycontin and less Oxycodone. Is it possible that the dos meant to increase the OxyContin to 60 mg twice a day ?

I'm also not sure why the Dilaudid is mixed in there. If the Oxycodone?Contin works, why not just more of that ? Are you taking the Marinol all in one dose or spread out throughout the day ?

[finz]

Where you on the high dose opiods and antidepressants before when you were on Marinol ? All of those other meds intensify the effects of Marinol. Also want to make sure you aren't taking the Marinol all at once.

[AintSoBad]

Sounds to a novice like me, as there are far too many meds, and not enough tolerance.

I pray, that you're getting all these meds from 1 doctor! (And, he should fear for his/her license!)
If not, you're not getting a good recommendation., and you're fooling yourself.

We don't take meds to make the pain disappear.
We take meds, to make the pain bearable.
That's all!

Pete

[mrsD]

Well, I too find this list dunning. But I will not comment on the pain meds, because that can be very individualistic.

I will say this...should you become ill with any virus in the liver or drug damage, your ability to metabolize this list will be impaired. Cymbalta is the only antidepressant that can actually cause liver damage.

I especially wonder at 600mg of Seroquel. What is this for?
That is a very high dose, and this antipsychotic can cause blood sugar derangements leading to diabetes and perhaps a sudden attack of ketoacidosis which causes mental confusion or when severe-unconsciousness, and may even become toxic enough to cause death.

I have been to pain conferences, and those educationally focused doctors, typically detox all the patients who end up with them at their tertiary facility. They are hospitalized for at least 2 weeks to get them off all the drugs they have accumulated during their failing treatments.

So yes, your combination of drugs may be becoming too much for your body to handle. And it becomes a very gray area medically because really "no one" can predict what will happen to you when you mix so many together, especially in such high doses. I really think it is time to find another doctor(s).