[daniella]

I posted this on the pn forum but is more rsd so I thought I would here too and I hope it is ok. So this was another pain doc apt. He is also specializes in rsd. Now the one I saw in Cleveland said I need a catheter so I could do extreme pt. Then the one in ucla said a scs. Now this doc who deals with rsd wants to try a epidural nerve block to see how I respond to see if it is rsd. The docs I have seen thought it may be similar to rsd because of my high pain level though no change in color etc. I asked him too about fibro and he said if it were that he could do some lidocaine I think infusion. I gave this doc all my records which he didn't look at or ask about my health background. He just asked how this started. I tried to be organize and represent myself well.I started to ask my list of ?'s and he said he would ask the ?'s .I did get to ask some of my ?'s after I pushed. I asked about there being a connection between my out of it and chest pressure. Also that I am so sensitive like I hurt my back and now it goes up and down so much. Also all the infections like eye and ear.How my pain is up and down and when I'm on them so much about damage which he said its not too and I need to be on them. He really only wanted to deal with legs but he didn't look at them or have me take off my sock. I wouldn't allow touching cause of my pain. I asked about meds but he said I am resistant which sems to be true since I have tried neurontin,lyrica,elavil,tramadol,cymbalta,liodacin e patch,vicodin. The plan of the block,pt,and psych sounds ok but I felt unheard and really rushed and like he didn't even look at my test results or mri's. He also said that the other docs know little about rsd and just because I don't have all the symptoms doesn't mean it couldn't and that is what the block is for. I was curious about after the first block but he said he didn't want to discuss further till after the first. You know at the start of this I would of done anything to take away my pain. Now with multiple dx's and docs wanting to do different things I'm confused. The doc even asked me why my eyes were bugged and I said i just have so many opinions. I drove more then 90 min each way and they spend so little time. He said there is no side effect other then infection. Is this true because the catheter and scs doc seemed to say the same and that turned out untrue. I have had a horrible week and now have an eye infection which the doc made worse so I had to go back and maybe again which doesn't help this with docs and mistakes. Also all the things to now between the meds,pt,nerve block in my foot has made things worse or other side effects I'm more apprehensive.Any ideas?Also I wanted to ask since I'm med resistant they say since I get little relief I have been wanting to try the fentnyl patch cause it is absorbed through the skin. Has anyone tried this? It really seems like the pain docs don't do much with meds or this just shots or procedures like the catheter.Ok now thanks

[Debby]

What do they mean you are 'med resistant'???

When this first happened to me, btw it hit both of my feet at the same time in 2003. I was taking neurontin & felt it didn't do a damn thing to help the pain. I was also allowed only 3 to 4 Norco (same as Vicodin only stornger with less tylenol) & I had NO NONE ZERO pain relief on those drugs either. WHY??? Because they were under medicating me. It took me awhile to get into the pain doc I see now & have seen since Sept 04. The Dr over a few months worked me up to a specific dose of MS Contin (generic is Morphine Sulfate & is what I take). Then I got relief. It doesn't take all the pain alway, but keeps it at a level I can cope with. That I can atleast walk around my home with the help of a cane. When I go shopping, I use a store scooter or my own electric wheel chair. I am on basically the same dose of meds now that I was on then. I am on less Neurontin than I was in 03 also. BUT I can tell now that Neurontin does help with nerve pain.

Walking on your feet even if they hurt is way better than not walking on them. I had alot of PT at first, but do not do it now. I learned everything PT wise that I could so I could do it at home too. Did it hurt at first? Hell yes it hurt. But when it reached a specific level of pain I quit pushing. I feel if I had not made myself get up & walk around my home when I did I would probably be completely chair bound, house bound, bed or recliner chair bound. Once pain relief is obtained to a certain level, that is when you are able to stand PT, to push yourself a bit more. Not everyone is lucky enough to reach that level of pain control. I wish all were that lucky. I believe I am that lucky. But am I pain free? NOT BY ALONG SHOT. I have pain 24/7, I have flares. But alteast now I know what I can & can't stand to do, I know when & when I can't push myself anymore. I am disabled & not able to work. The level of meds I am keep me too sleepy & tired to work. Plus my brain doesn't work like it use too. I loose the ability to think of what word I need to use. If I could get off these meds orally then maybe I will get my brain function back *LOL*

After the first of the year I am going to look into getting a pain pump. My PM Doc feels I would be a good candidate for one. For now I want to get thru the holidays.

Anyway from what I am seeing here isn't so much you are med resistant as that you are being under medicated like I was for the first 10 months of pain. It is not easy to find a PM Doc who will treat you with pain meds strong enough to ease this AWFUL pain. Especially someone as young as you are. They are so darn afraid of us becoming addicted, that they forget to think about what type of quality of life they want us to have. I went thru 2 other PM Docs. One said he never wrote pain meds for anyone with RSD. This is the doctor who Dx'ed me with RSD. Another was a big PM Clinic who would only take me up really slowly & I don't think they would have given me the pain relief I do have now. Then finally I got into the Doctor I am with now. And he is great & alot of their patients are RSD patients. And they will treat RSD as aggressively as we want them to. Well like I said if I could get Ketamine treatments paid for by Medicare I would go for it. I had Ketamine infusion during major back surgery 2 yrs ago because my surgeon worked with my PM Doc in trying to keep RSD from spreading into my back. It worked. It didn't spread.

Anyway good luck.

Good luck,

[ali12]

Hi,
I think I am med resistant, because I haven't found any tablets/medicine that take away the pain and I have been on Lyrica, Ibuprofen, Beclofen, Tramadol, Gabapentin, Paracetamol, Amitriptyline and Morphine

It sounds like you PM doctor isn't that good, you should be able to ask all of the questions you want to and he shouldn't tell you not to. My PM doctor isn't good and I am hoping to trying to get a referal to another hospital.

I haven't tried the fentnyl patch but I have heard that it can be really helpful, so talk to your doctor about it and see what he says.
Do you have any of these symptoms?:
Muscle spasms
Severe burning pain, stabbing pain, aching pain
Osteoperosis
Temperature changes
Colour changes
Swelling
You have to have 3 or more of the above symptoms to have RSD (I have all of them apart from the Osteoperosis

What sort of nerve block did you have? I was just wondering because I had a 'guanethidine' nerve block and it caused me to have severe balance problems, swelling and my pain went up a lot.

Hope you are feeling better
Love
Alison

[ali12]

These links might help you, they are all about eye and ear infections:
Hope they help you

http://www.surgerydoor.co.uk/medical..._infection.htm

http://www.patient.co.uk/showdoc/23068797/

Take care
Love
Alison

PS: I forgot to mention hypersenstivity on the RSD symptoms list, there are also other symptoms including hair and nail changes, headaches and dental problems but these are not the main symptoms

[tayla4me]

Hi Daniella,

I think " med tolerant" may be a better term than "med resistant".
Resistant seems to insinuate that you have some control but are resisting it.
Unfortunately after months and years of certain meds we may feel as though they are not helping as our pain is still there or more severe when in fact we have just become tolerant to the drug and require continuing higher amounts to get the same amount of pain relief. Unfortunately in the long term, totally depending on drugs for pain relief is a flawed system of pain control, it does leave us in a very vulnerable situation for sure.

I think your doctor is actually on the right track here. It seems he wants to eliminate the possibility of your pain being from some other source but at the same time provide a better quality of life for you.

I think it is a very good decision to try some blocks, epidurals etc. These maybe a viable alternative as seemingly your body has become so tolerant that your meds are just not working for you. Even to give your body a detox from what you are having and then start a new regime makes the block/epidural option a good one.

Whilst there maybe some risks they are not huge and to possibly find a different way of managing your pain rather than medications, it is a good option.
These blocks to may help you with your PT too and this is a plus--pain is far worse when we are not moving our joints. As painful as it maybe, it is only going to get worse from lack of mobility.

Heaps of luck Daniella, I do hope this doctor can sort things for you.
Love Tayla


PS-I don't want to seem anti drugs ! I am not against drugs, I take them, but I just can't see the point of taking something that I know is no longer working for me.

[daniella]

Hi. Well thank you. See I have been being on my feet through the pain. I take short walks now so on. After I went to cleveland and they wanted to do the catheter and he said if I could be on my feet through the pain I could wait. At the start of this I was in bed full days so now this even though the pain is high is far for me. Thanks about the meds. I guess I meant more that I have tried many and none help. I do feel though your right that they don't work aggresivly with me and I need maybe a combo of things and why I felt maybe a med that is absorbed might be better. If I do the lumbar sympathetic block I will ask again. As for my symptoms well I had osteo before the rsd cause of my eating disorder history though doing good now it left me with that. I have the constant severe pain,sensitive to cold,but not the color,hair,edema. What are the side effects of the lumbar block other then infection? I just would like to feel heard from the docs like I do from you guys. Thanks