NeuroTalk Support Groups - hi everyone! Need advice

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)

- - hi everyone! Need advice (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/91912-hi-advice.html)

I was just thinking of you. You know I am here for you to talk anytime day or night. I was worried. I did a day patient well for 4 days because my pain was too high but anyhow these programs don't use as needed meds like opiates etc only the ones like neurontin. My current pain doc feels the same way as in the long run he said that your body begins to process pain more when used on a regular basis and you would need to keep increasing to get any benefit. I think as a once an awhile thing it is different. I am not sure the answer and to I think everyone with rsd responds to treatments different. I am sorry for all though who have to deal with WC pushing something. I don't like giving advice on what people should do for treatment because what may help one person may be torture for another. I do feel for you on a side note that you need to work on some of the stresses in your life and over doing it. It is ok to say NO to someone. It does not make you a failure nor does asking for help and support. It is a success to reach out and know your needs and barriers. I do think that certain type os coping that some of the programs aid with like biofeedback,family and self therapy though does not take away the rsd physical pain can aid with the depression/anxiety and also help families to understand. I saw your other post as well about the detox. Can you ask your doctors what the long term plan would be and what types of other relief or treatments you could try especially if the pain gets to a bad state? You are in my thoughts.

hey
mike is right,,lamene terms,,,,,,,,,,rotaion of meds, not increasing them ,Then if you come off of them opiods withdrawel[one of many] it makes you whole body ache,,even parts that are not afflicted,,flu like symptoms,,,ive been there,,,rotate not increase,thats where the danger is,,,,,,,and about w/c,,,,,,i fought them 15 yrs ago once,,,,,they just want to frustrate you to throw in the towel their dr,s are being paid to find something else that you did to say its a new injury,If they can do this and they will,,there goes your claim,,they try it with me for 2yrs,,,,i ended up getting a lawyer and they offered a low settlement,,i asked for a couplemore grand,,and thry settled,,,wasnt much 5 grand total back then,either way,,they by law have to take care of you,and they have to offer you a secound dr to go to,,,,good luck,bobber

Hi stressout,
I can't tell you how disturbed I am over your WC care of you, or rather lack of car. The only option they gave you were the blocks. That means to me, they are responsible for the outcome of the blocks.-----spread of RSD. There are many on the forum that have had bad results from blocks. In my opinion this PM Dr. doesn't know what he is doing. He doesn't sound confident in his treatment. Everyone knows how important it is to take care of the pain and sleep. Our condition worsens without these two elements being taken care of. Meds do not spread RSD! period As far as physical therapy, it was only because of physical therapy, I got the use of my left arm back after surgery and getting RSD the day following surgery. It took 100 treatments. They wanted to operate on my shoulder, but I said NO. I had private insurance. This was about after 50 treatments. and I was paying for 50 massage treatments to soften my shoulder and get more out of the p.t. I called my insurance company and told them my rehab Dr. that I was sent to after the surgery induced RSD sent me to orthopedic surgeon and he wanted to break my shoulder during surgery. I told them I would still need physical therapy after 'this' surgery. I told them I choose to have p.t. and massage therapy for my frozen shoulder and I could choose surgery or massage therapy with my pt. The agent said just a minute----came back to phone and said send your massage therapy bills to us, we'll pay them. I'm glad you have an attorney. WC is doing you a great disservice, actually putting themselves liable for your worsening condition. Document everything that goes on with your Drs., like your spasms and them not being in the notes. That's not OK
It's not OK that you are not given pain meds for RSD. There are others meds too, that my Dr. has given me to reduce nerve pain. Anti=depressants help greatly with nerve pain. anti-seizure meds help with nerve pain and can completely do away with spasms, jerks electric jolts, anti-anxiety meds help greatly to reduce anxiety and keep your system calmer, thus pain is reduced. I have not increased my 'pain' med, vicodin in strength or amount in over 5 years. Because I'm sleeping good now, my Dr. cut my anti=anxiety med in half, and I'm taking 5 vicodin instead of 6.
I'm sorry you are having to deal with WC, but let your good attorney take the stress off you and call the shots. Keep a record of what he needs to know, and tell him what is happening. Being in pain creates more pain and activity of the sympathetic nervous system, like spread. Hope the best for you, stay with us, we all need support. Soft hugs, loretta smiley face

Quote:

Originally Posted by Dew58 (Post 531858)

Outstanding research,Mike, Thank You so much for the effort you place into your posts.

Opioid rotation is the path my PM is following. I am in a place where my pain is tolerable, and does not rule my every thought.

Opioid rotation is increasingly becoming an option to improve pain management especially in long-term treatment. Because of insufficient analgesia and intolerable side effects, a total of 42 patients (23 male, 19 female; mean age 64.1 years) suffering from severe musculoskeletal (64%), cancer (21%) or neuropathic (19%) pain were converted from high-dose morphine (120 to >240 mg/day) to transdermal buprenorphine. The dose of buprenorphine necessary for conversion (at least 52.5 microg/h) was titrated individually by the treating physician. No conversion recommendations were given and the treating physician used his or her own judgment for dose adjustment. Pain relief, overall satisfaction and quality of sleep (very good, good, satisfactory, poor, or very poor), and the incidence and severity of adverse drug reactions over a period of at least 10 weeks and up to 1 year was assessed. Following rotation, patients experiencing good/very good pain relief increased from 5% to 76% (P < 0.001). Only 5% reported insufficient relief. Relief was achieved with buprenorphine alone in 77.4%, while 17% needed an additional opioid for breakthrough pain. Sleep quality (good/very good) increased from 14% to 74% (P < 0.005). Adverse effects were reported in 11.9%, mostly because of local irritation, did not result in termination of therapy. Neither tolerance nor refractory effect following rotation from morphine to buprenorphine was noted. Conversion tables with a fixed conversion ratio are of limited value in patients treated with high-dose morphine.

PMID: 17559481 [PubMed - indexed for MEDLINE]

Jennelle..it is odd that WC is making you go through this program. What is their basis of thought for an outcome? How will you handle the pain once you have detoxed? What really bothers me is that patients in chronic pain DO NOT BECOME ADDICTED to their pain meds..as the patient takes the meds to ease pain..not to get high. I don't know about you all, I do NOT get a high from my meds. I would be interested in your replies.:)

Wow,

While I certainly agree with the results of this study and I certainly appreciate pain meds, I am afraid that if you have type I CRPS, you are excluded from this cohort. The only possible inclusion for CRPS patients as so far as this abstract is concerned is that it addresses neuropathic pain, for which you could infer type II CRPS, but without reading the full text article, it may have nothing to do with us. So, to therefore take this to the bank, might work, or could severely blow up in your face.

I am not a nay-sayer, just evaluating the abstract for what it says...

Neuropathic pain is burning pain...be it CRPS I or II, the burning pain comes by the pain receptors changing to a hyper state. The burn is still a burn.

Quote:

Originally Posted by Dew58 (Post 532357)

Neuropathic pain is burning pain...be it CRPS I or II, the burning pain comes by the pain receptors changing to a hyper state. The burn is still a burn.

Of course, I certainly agree that CRPS is a type of neuropathic pain!

I am not discounting the abstract at all! After reading it, my concern is whether or not CRPS patients are included by this study at all. They may well be. Within the body of this paper, which is not included, under the heading of "Methods," the authors would (usually) have listed their inclusion and exclusion criteria. The authors may have excluded CRPS patients (and/or others) from their study or only included a certain subset of chronic pain patients; we just are not given that information in the abstract.

It is just that in research methodology, "guilty by association" doesn't work and many otherwise good papers get in trouble for over-reaching, despite peer review, readers over-interreping the findings or taking the findings of one paper and applying the results to something similar, but not the same.

I am not disputing the findings, it is a very interesting abstract, rather just trying to provide a quick crash-course in research methodology. That's all!

Thank you all again for your input and thoughts it means a lot to me. I feel like they have no other options for me but this pain clinic because I have finally found a drug regiment that works for me and now I have to change it again! I have tried so many...anti-depressants, nerve meds, even anti-seizure meds (i take baclofen for spasms). My case manager is the one really pushing this clinic...it was her idea from the start all because I asked for a different doc because mine was incompetent. She came up with this and I told her over and over I didn't want to do it....then she got all my current docs on the plan-especially my pain doc...now I don't feel like I have a choice because I am worried my pain doc will just cut me off and then I will be screwed! I could cry I feel so backed in a corner.
The attorney told me to get the eval done and then take the plan somewhere closer to home so I wouldn't have to leave my home for almost a month. They really didn't give me much of a plan...and when I asked about delayed pain from the 8hrs of pt they want me to do a day...and flairs they had no answer for what they would do to treat it. I know my spread can't be from the meds....they seem to think my legs are just sensitive nerves from long term use of narcs....but why would my hair fall out, my feet turn blue and my legs swell....usually with nerve senistivity it is just pain.
I guess I need to try....one of my great friends from here told me to stand up for myself if I go. If my pain is not controlled, to say something and not just let them make me tough it out.
Thank you all for your support!
Jennelle

Just dropping in to share a bit of my story...

RSD 5+ years... NO NARCOTICS in the last 5yrs.... Found out through trial and error that I am SEVERELY ALLERGIC to every Narcotic pain killer we tried...we tried many!! Anaphylactic Shock with in minutes to a few hours....

My RSD has spread FULL body including organ involvement.

Narcotics did not cause my spread... not even close.

I wish you the best.....

:hug:gentle hugs,
Abbie

hi everyone! Need advice

Jennelle, I also agree with everone on this. Do not let them play mind games or body games with you! I once went into a detox center on my own. This was before my RSD had been dx. From the time I had my surgery and the Dr. cut thru the nerve on my L small toe,it took over two and one half years for anyone to figure out that I had RSD! So when I went into the detox place to get off everything that I was taking,I was in there for over 6 weeks. When I got out by then I was shaking so hard from being off of all of my meds. I had to go right to a hospital,where they did fianally dx me with RSD. Then it took 2 years of pt and ct so I could do things by myself. Then came the time it took for going thru the loops for SSDI! Please stick up for your rights,get a mean lawyer. Do not go off of the medicine that helps you thru your days and nights. If it were me I would not go back to the pain clinic. It did nothing for me,just a wast of time. Good Luck! :hug: