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Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS) |
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04-24-2010, 09:09 AM | #1 | ||
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My back is getting stiffer by the day, I have no padding in my elbows and knees. My hands are tremoring- I was up almost all night because, for the third time, I am trying to get on baclofen (it did help with the back pain but gives me a bad headache, I am hysterical right now because I just want to give up. I have tried every treatment including ketamine. Nothing works -my back is so stiff now I can hardly bend or turn. I am hanging on to my job by a thread. I know you guys dont have any answers but just needed to vent....Has anyone had difficulty getting on baclofen but did make it??
TY Debbie |
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04-24-2010, 09:41 AM | #2 | |||
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Grand Magnate
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"Thanks for this!" says: | debbiehub (04-24-2010) |
04-24-2010, 11:11 AM | #3 | ||
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Hello Debbiehub.. I am not much help with advising you on your meds as I am cold turkey RSD... but I can help you by relating to the relentless pain RSD offers and the feeling of ..okay.. IAM DONE! Does anybody care and who heard me out there.. It is all so common for us to have to our ups and downs to RSD..It just beats the pulp out of us and leaves us feeling sad and alone..and desperate..Please know that you are in my prayers and that I am sorry for your pain.. Please know that you are not alone in your pain and fight.. You are however stronger than you realize..but on days like these we all feel helpless... try to take some time alone..take in some fresh spring air, take a warm bath.. sit in the sun and remember tomorrow will be better..I promise..Just remember to move as much as possible even thru your pain as that will keep you limber and able to move..keep moving... Hugz, kathy |
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04-24-2010, 07:29 PM | #4 | ||
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Deb, I hear you.....We've all been there with frustrating days/nights and feeling like we have to give up. Hang in there ! I'm sorry I don't have any words of wisdom on the Baclofen |
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04-24-2010, 07:57 PM | #5 | |||
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Debbie,
I have been on Baclofen for year & years. I had no problem getting on it at all. In fact we just upped it to 20 mgs every 8 hrs. As far as I can tell I have had no side effects at any time while taking it. I am sorry to hear that you are having such problems. You are the first that I heard of who has had this problem actually. And I am sensitive to certain meds. So sensitive I can't take them. Two are Topamax & Lamactil. And any type of anti-depressant out there. All of them throw me into a manic episode of huge magnitude. DebbyV |
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04-24-2010, 09:30 PM | #6 | ||
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Thanks for your support. The baclofen is giving me like zingers in my head...
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04-24-2010, 10:25 PM | #7 | |||
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Debbie -
I have no further information on it, but check out this intriguing post [04.11.2010] from the MS forum: I've taken all those meds in the past and quit them, because of side effects. Spasticity is a part of MS, in one degree or another. My spasticity is ever present, but nothing, with which I can't cope.http://neurotalk.psychcentral.com/thread119119.html Mike |
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"Thanks for this!" says: | hope4thebest (04-25-2010) |
04-25-2010, 12:43 AM | #8 | ||
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Hi Debby,
The LDN that Mike that is referenced in Mike's post is Low Dose Naltrexone, and is advocated by Stanford Pain Center. There is a website where you can get more information on LDN and its application for muscle spasms in MS and other neurological disorders. www.lowdosenaltrexone.org I hope your painful bout does a turnaround soon....I'm sorry you are going through such a hard time...I know you need a break.... Hope4thebest xoxox |
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04-25-2010, 07:00 AM | #9 | |||
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Dear H4tB -
Good catch re LDN. I was aware of it's anticipated role as a potentiator for opioids, and I certainly swilled enough of the stuff to block opiod receptors the in gut before Hospira, Inc., of Lake Forest IL, the sole RDA licensed produced of Naloxone HCL jacked up the price by 600% within a year, to the point that it was no longer worth the candle. But never in my wildest imagination did I suspect that it was as versitle as suggested in the website you posted. Of course there weren't all that many published articles, a couple really, the rest of the website being a collection of tantalizing leads that may be fruitful in the near futute. Thank you again for spotting this. Mike ______ ps Something I stumbled on by chance, really got my attention. I ran down on of the articles alluded to on the website, Microglia-mediated neurotoxicity: uncovering the molecular mechanisms, Block ML, Zecca L, Hong JS, Nat Rev Neurosci. 2007 Jan;8(1):57-69: Abstracthttp://www.ncbi.nlm.nih.gov/pubmed/17180163 This in turn led me to some good stuff having little if anything to do with LDN, but interesting nerverless. See, Norepinephrine enhances the LPS-induced expression of COX-2 and secretion of PGE2 in primary rat microglia, Johannes CM Schlachetzki, Bernd L Fiebich, Elisabeth Haake et al, Journal of Neuroinflammation 2010, 7:2, free full text at http://www.ncbi.nlm.nih.gov/pmc/arti...2-2094-7-2.pdf Abstracthttp://www.ncbi.nlm.nih.gov/pubmed/20064241 |
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"Thanks for this!" says: | hope4thebest (04-25-2010) |
04-25-2010, 08:58 AM | #10 | ||
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Magnate
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Hi. I just wanted to let you know I am thinking of you as well. I wish I could offer more other then I hear you and understand. I hope you feel better and get the baclofen worked out.
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