I am here about my daughter. She is 29 and got RSD about 5-6 years ago from a fall at work. She has RSD in her left arm. Her and her husband just decided to break up and she wants to try and get on disability and move in with me. Her current traveling nurse job ends on 3/24.

Her husband has been telling me she is taking way too many pain pills and I have seen a couple of times where I witnessed her seeming very high. Last night she stayed at my house and seemed extremely high. I checked and she had taken 8 percacet and 4-6 tylenol PM (she forgot all her other meds (morphine, hydrocodon, Lyrica, Diazepam, Carisoprodol, Promethazine, Xanax and ambien). I was really scared she would OD last night and don't know if I can deal with her living with me that high all the time. I don't want to seem insensitive, I really care about her.

I would like to know from other people with RSD if they are taking this much pain medication or does this sound like a problem.

Also any other advice would be appreciated.

I am very sorry to hear what your daughter is going through right now. As hard as it is to have RSD...I think it is sometimes harder for our loved ones who want to help us but don't know what to do. I have never taken percocet...so I can't necessarily say what sort of dose is too much for someone with RSD. We are all different and respond to different meds and doses.

But more important I would think is that she didn't take her other meds. Some of those are ones that need to be taken daily, multiple times a day in most cases, and it can really mess you up if you miss doses or don't take them regularly. When my RSD pain got worse at the beginning of last year the doctors put me on valium and it really knocked me out to the point where I felt like at least when I was sleeping I wasn't in pain. But my boyfriend told me I did a lot of very weird things (all of which I do not remember) and maybe this is the sort of thing your daughter is going through right now.

I can tell you that when it comes to medications and RSD that it is important to have a doctor who works with you to find the right combination of meds to help with pain and other RSD symptoms. You do NOT want a doctor that will just keep throwing pills at you to shut you up. I switched doctors, went off ALL my meds, and am now working with my current adding things back in one at a time. I am on far less pills and I feel a lot better. While we all have to make our own decisions when it comes to the meds we take...the point that needs to be driven home with the doctor is that if what she is taking now doesn't give her enough relief then she's not taking the "right" meds and something else needs to be tried.

I cannot advise you whether your daughter may be taking these things because she has a problem with them or if it is because at least when she is out of it she is not in pain. RSD pain is SO horrifyingly bad and most of us would do anything to make it go away. My advice would be to sit down and talk with her about it. Don't accuse her, please don't make assumptions about what she is going throgh or WHY she is doing something...instead just try to let her know that you are there for her. Support from family and friends has gotten me through the rough times...but many who have RSD don't have that support from family and friends and then they feel like they are alone and have no where to turn. Imagine...you are in horrifying pain all day every day and the doctor is no help and you feel like no one understands or is there for you.

That doesn't mean that you ignore the problem that is there. Clearly...she is not getting proper treatment for her RSD. Ask her how she is doing...ask how well the treatments are going...offer to come with her to doctors appointments as support. If she says she is just in too much pain and cannot get through the day...encourage her to try to find a new doctor. I don't know what all she had gone through (if she has tried a variety of treatments or if the focus has mainly be on meds)...but that is something to ask.

It obviously seems like you care...you need to make sure that she knows that and knows that she is not alone. I don't envy you for the situation that you are in. If you have any questions or need to get a better understanding of RSD and what it does to those of us who have it...please ask. Or if you want to know about some alternative treatments...things we do to help us get through each day, etc...we can always help out with stuff like that as well.

Take care.

Thanks so much! I am looking for ways daily to help her feel more comfortable and in less pain. I heard physical therapy is good. She only went for a short while and said they were hurting her too much and they did not understand. I wish she would try it again. I feel like not only does she need to move her arm more, but the ultra sound and stuff could really help.

Thanks Again, Terri

Hi Terri,
I am saddened to hear about a marriage breaking up. It is a sad situation. My opinion (for what it is worth) is that your daughter is taking way too many meds. It is almost a blessing that she did not take the others that night because she would have probably OD. I had gone through a divorce when I was 30 and it was the pitts (and it was before rsd). Add on rsd and everything she is going through and I think she really needs to see a psychologist and maybe someone specializing in pain that can understand not only is she having physical pain but emotional pain as well. I can understand how she feels as I would take anything just to get the pain to go away...it is brutal how painful it is AND it can ruin your life. I think you at first should sit down and tell her your concerns (as it is your house and you can't handle seeing her like it). I went to the hospital once and they put me on soooo many meds and pain meds then said they couldn't do anymore and sent me home. I have no real recollectioin of it. My poor son said I wasn't making any sense and kept falling asleep while sitting up. Well he and his friend took me to the ER and found out they overdosed me and I could have died had my son not recognized the problem. It was a nightmare. I think she should be weaned off some of them as she is taking to many things that do the same thing (so why would she need to do that)??? Maybe you could go to the doctor's with her next time and either talk to him alone or with her whatever you think would work. Don't alienate yourself from her but be firm and say you cannot move here until you get rid of some of these meds. She may need rehab for a bit to figure out what works for her. Myself, I've been through the mess and have tried it all (or just about) and the pain is relentless. I had to resort to natural vitamins and trace minerals in an iv. I started out over a year ago and it saved my life. I now go every six weeks. After four months of doing it I was able to get off ALL pain medication and I was told the previous year I could never do that. My burning pain is alot lower too so don't give up hope. She just needs to find the right thing and all those pills slowly make your body die (is what I found out). I've had full body rsd for seven years now. Hang in there and I applaud you for stepping up in a loving way. Most people would be in denial but you are doing a great job. You should be proud of yourself. Let us know in any way if we can help you or her out. We are all here for you.
kathy d

Thanks so much Kathy. I feel bad because she if feeling like I don't understand ...I am trying to both give her support and do what I think is best. I see my therapist tomorrow so that should help and I am going to see if I can pay for some visits for her to see my therapist too. She said she would like to go.

Thanks again,

Terri

I am sorry about your daughter. I have not had issues with meds but when I was at Cleveland Clinic pain program which I was only at for a few days there were people who were. Part of why the program was not for me because a huge emphasis was going off meds,therapy around that etc and I did not face that plus my pain was too high. So I have heard of this being an issue with meds. Obviously with rsd some people need meds to function though extreme use and not under proper doctor care is not good. Is one doctor rx all those meds? Is she under the care of a doctor who deals with rsd and has she looked into other treatment such as ketamine etc? She has been employed as a nurse and on all these meds?
Divorce plus rsd plus change with job/relocation is a lot to face and I agree she needs more support mentally. Can you suggest her seeing someone? Also though I am not clear exactly of her doctors care it sounds like maybe another opinions to look at a different way of treating her. Could you suggest seeing a new pain doctor?

I am so sorry for your daughter one thing to check is if she remembers raking meds. I go through these tiems where I cant remember what I take what I do or where I am so my mom has to take all my meds and give them when its time. My doctor said the forgetfulness is all part of rsd. If my mom doesnt take my meds I will keep taking them every half hour, I have even been in the hospital where I ring the nurse every 20 min for pain meds because I cant remember she just gave them to me, i feel so bad when I do relize what I have been doing.

Sam

I am sorry our daughter is living with RSD. I am glad you found Neruo Talk. AlthoughI do not have this issues, I do understand the pain people go through with this illness. Please try to get your daughter to a good pain management specialist. RSD can be terrible, and drive a person to using the medications in a dangerous way. If your instincts are telling you something isn't right, please seek out the help. RSD can be controlled in a safe way. There is a happy medium there, that with the right council, she can get help without being in danger. Combinations of medicines can be dangerous. Give her all your love and support. I will keep you both in my prayers. ginnie

I am a big believer in physical therapy...but not all physical therapists are created equal. Some just run you through a generic programs for whatever limb is affected...which is generally not a successful way to deal with RSD. The good ones cater specifically to the needs of the patient to help them reach their goals...focusing on function, pain reduction, and desensitization. It is a slow process and if you don't end up with a good physical therapist then it can feel like the situation is hopeless.

I had really great success with at home physical therapy (where the therapist come to the house). The woman who came was extremely caring and compassionate...pushing me just enough that I continued to make progress but never pushing me too far to the point where I couldn't function afterwards. It was also really good because everything we did in therapy was stuff that I could do on my own even when the physical therapist wasn't there...and if you do these things daily instead of just when the therapist is there you will see much better progress faster. I also think it's much easier to build up a relationship/partnership with your physical therapist in this environment vs at an outpatient clinic. And the doctor may be willing to perscribe this if the meds she's taking make it difficult for her to drive. And it is always possible to transition from home therapy to an outpatient clinic once she reaches a certain point in her recovery.

I was able to buy myself an at home ultasound unit off of amazon.com for less than $50 and I use that every day (typically at the start of the day after a nice warm bath with epsom salts). My physical therapist was also able to talk to my doctor and get me a portable TENS unit (which was a godsend) that I can wear throughout the day for pain relief. We talked about it on a Tuesday and on Wednesday I got a call saying that they were ready to deliver it to me. I find that the TENS is probably the best tool I have for reducing my RSD pain in my left ankle. You can get a TENS unit faily cheaply online (though many require a doctor's script).

Heat helps relieve the pain (or at least take the edge off) so I am a big believer in trying out different types of heating pads. The disposable kind that you can get at any pharmacy are great (I usually get the generic kind because therma care and other brand names can be pretty pricey). Especially for my upper body (arms, back, neck, hands) since I can put them directly on whatever spots are really bad and they are much lighter weight than the microwaveable kind. And unlike electric heating pads...you can wear these while you move around and go through all the daily life activities.

Those are just a few of the things that have helped me a lot in the past year and I am always on the lookout for new things to add to my routine to make things a little easier for me. Sometimes...when the doctors fail you...you have to fight to find things on your own that will help you to get your life back. It shouldn't have to be this way but unfortunately it is often the case with RSD...starting with getting a new doctor when your current one fails to help you.

I really feel for your daughter and your entire family. This must be terrifying. I will give you my "opinion." i have RSD and take lots of meds, but also have many people in my life with substance abuse issues. Be honest with your daughter about your concern. Tell her how scared you were to see her take that much at once. Make sure that if she has multiple doctors writing her prescriptions, they all know what the other one is writing. 8 Percocet is definately alot!!!! When mixing all those meds together, you must take them exactly at the doctors recommended dosage or respiratory depression issues come into play & could be deadly. Whether she has addiction issues or not, this sounds like way too much meds. This is coming from someone who takes 10 or more different meds a day. I have seen alot of pain med abuse with my loved ones and it is hard to deal with, especially when you try to confront them & they try to justify it bY saying they have scripts for it all. It may be several different docs or just one script happy doc....alot of those out there. If she is needing to take 8 percocets, they must not be working for her. If they are not effective, they can try other pain meds that may work good enough that she can take her prescribed dosage. No doctor would purposefully dope her up that much. RSD is an extremely painful disease. Maybe a patch pain med would help her so she cant take more than directed. Im not saying she has an addiction. I dont know her. But it sounds like she is overmedicating, even if she is still in pain after taking that much. I take pain meds but had to learn to accept that i will always be in pain, even with all the meds. Maybe they can try some other meds and find something that works better. Feel free to PM me if you want to discuss this more in privafe in more detail. I would live to help because i have seen personally so many lives destroyed by pain meds. Its all about finding that happy medium. I wish you luck & hope you can get to the bottom of this. I know it will. E painful, but maybe her moving in temporarily will be a good thing so you can keep an eye on her until you know what you are dealing with. Make it clear that hou will not allow misuse of meds in your home & distribute each dosage to her if you must if gou suspect abuse. She will not be happy but at least you will know she is safe & getting the help with daily living that she needs from you. You could warn her that if she decides to abuse her rsd meds, the docs will take her off of them......then she will really be in pain. I always remind myself of that because i dont know what i'd do if i abused them and had them taken away completely. That theory may scare some reason into her. Please let me know if i can belp.