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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Old 04-24-2010, 09:09 AM #1
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Default Please help - cant take it anymore!

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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Old 04-24-2010, 09:41 AM #2
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Heart Debbie....



I'm so sorry
I feel so helpless, not knowing what to say.....
Other than 'I Care'.

I understand the place you're in of wanting to 'give up'.......
Hang on tho......

Others who know more about Baclofen should be along........
for now, just accept my little and know that I am praying

Rae
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Old 04-24-2010, 11:11 AM #3
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Quote:
Originally Posted by Rrae View Post


I'm so sorry
I feel so helpless, not knowing what to say.....
Other than 'I Care'.

I understand the place you're in of wanting to 'give up'.......
Hang on tho......

Others who know more about Baclofen should be along........
for now, just accept my little and know that I am praying

Rae

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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Old 04-24-2010, 07:29 PM #4
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Quote:
Originally Posted by debbiehub View Post
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

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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Old 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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Old 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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Old 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.

I find stretching often, as needed. through the day, helps to keep mine under control. LDN seems to help, as well.

If your spasticity is really bad, as some of us have, then, you may have to endure a few side effects, in order to calm it down. Another alternative, would be the Baclofin Pump, which sends the med to the proper spot and, thus, no foggy, sicky side effects.

I hope you find relief soon..
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~Sally [Emphasis added.]
http://neurotalk.psychcentral.com/thread119119.html

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Old 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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Old 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:
Abstract
Mounting evidence indicates that microglial activation contributes to neuronal damage in neurodegenerative diseases. Recent studies show that in response to certain environmental toxins and endogenous proteins, microglia can enter an overactivated state and release reactive oxygen species (ROS) that cause neurotoxicity. Pattern recognition receptors expressed on the microglial surface seem to be one of the primary, common pathways by which diverse toxin signals are transduced into ROS production. Overactivated microglia can be detected using imaging techniques and therefore this knowledge offers an opportunity not only for early diagnosis but, importantly, for the development of targeted anti-inflammatory therapies that might slow or halt the progression of neurodegenerative disease.

PMID: 17180163 [PubMed - indexed for MEDLINE]
http://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
Abstract
Background: Recent studies suggest an important role for neurotransmitters as modulators of inflammation. Neuroinflammatory mediators such as cytokines and molecules of the arachidonic acid pathway are generated and released by microglia. The monoamine norepinephrine reduces the production of cytokines by activated microglia in vitro. However, little is known about the effects of norepinephrine on prostanoid synthesis. In the present study, we investigate the role of norepinephrine on cyclooxygenase- (COX-)2 expression/synthesis and prostaglandin (PG) E2 production in rat primary microglia.

Results: Interestingly, norepinephrine increased COX-2 mRNA, but not protein expression. Norepinephrine strongly enhanced COX-2 expression and PGE2 production induced by lipopolysaccharide (LPS). This effect is likely to be mediated by b-adrenoreceptors, since b-, but not a-adrenoreceptor agonists produced similar results. Furthermore, b-adrenoreceptor antagonists blocked the enhancement of COX-2 levels induced by norepinephrine and badrenoreceptor agonists.

Conclusions: Considering that PGE2 displays different roles in neuroinflammatory and neurodegenerative disorders, norepinephrine may play an important function in the modulation of these processes in pathophysiological conditions.

PMID: 20064241 [PubMed - in process] PMCID: PMC2819253
http://www.ncbi.nlm.nih.gov/pubmed/20064241
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Old 04-25-2010, 08:58 AM #10
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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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