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Has anyone tried LDN and became a tighter or more together EDSr?
Posted: 25 August 2013 06:23 PM   [ Ignore ]  
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I am 10 days into trying this for pain.  It been used by other EDSrs who have had a good run (I also have auto-immune hx as well as cancer hx so it makes sense since it is protective). I’m not feeling the same as other EDSrs report.  So just wondering if others here can share their experience.

EDS99

Sorry this is in “orthopedic joint forum”.  How do I change it to the right place?

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Posted: 31 August 2013 12:04 PM   [ Ignore ]   [ # 1 ]  
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EDS99 - 25 August 2013 06:23 PM

I am 10 days into trying this for pain.  It been used by other EDSrs who have had a good run (I also have auto-immune hx as well as cancer hx so it makes sense since it is protective). I’m not feeling the same as other EDSrs report.  So just wondering if others here can share their experience.

EDS99Hi EDS99, I think this may be the right place for this question, actually! I’m curious what others think. I’ve never tried it because I never had pain (until NOW—Gads.) But I know a lot of folks who use it with mixed success. I’m trying to figure out the SOURCE of the pain, and am working hard to do so. I make my husband nuts as he often says, “Why don’t you at least TRY something for the pain?” My response is if I cover up the pain, I’ll never figure out the SOURCE of the problem, and which treatments hit the source. But this is not something you all will want to try at home. Trust me. If you can get pain relief, the quality of your life will go up. I’ll continue to work ‘in the background’, if you will, to locate where our bodies are going wrong. I don’t think “joint hypermobility” is the true source. After all, I’ve been hypermobile my entire life, and never experienced pain until now. So what just happened? That’s what I’m working on! So, anybody else try LDN? I understand it is supposed to help with other things beyond pain—am I right? Interesting topic!

Sorry this is in “orthopedic joint forum”.  How do I change it to the right place?

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Dr.Diana, therapeutic optometrist disabled by EDS/POTS/ME/CFS for a decade, now recovered and practicing full-time at POTS Care cheese

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Posted: 03 September 2013 09:40 PM   [ Ignore ]   [ # 2 ]  
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Are you talking about low dose naltrexone?  Can you use it with narcotics?  Tell me more please!  I live with severe pain, and I would love more options.  My pain management doctor is not great! 
Shonda

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Posted: 03 September 2013 11:19 PM   [ Ignore ]   [ # 3 ]  
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No you can not use it with opioids because it is a opioid receptor antagonist.  Its action on the o receptors stimulates endorphin levels and I believe opioid growth factor. PEA (supplement sold in Europe) can be used with opiods.

Be careful. From what I am reading long term opioid use or very low opioid dosing (I think)  can make for more pain.  Opioids are god for short term.  Pople who use opioids would need to come off of them to get on LDN.

Are you from the Dallas area? My PT just started there.  She is VERY good and knows EDS… She is a 3rd level certified dry “needler”, DPT, LMT, & CERT in conditioning.

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Posted: 04 September 2013 03:29 PM   [ Ignore ]   [ # 4 ]  
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Diana, I thought I posted to you but I guess I didn’t press the send button. rolleyes

I felt the same way for the longest time. I had cancer 20 years ago. if it were to appear in my bones (most likely place), I would like to know that, asap, so I could have the most time or get the best results through treatment. Also, the long term effects could put me at risk for subsequent cancers. This is why I avoided pain meds. It paid off because I get the full impact of LDN. However, chronic and acute pain can change the body metabolically when it goes unaddressed. So the pain can evolve to something else, chemically, in one’s body. An example would be that an acute pain didn’t stay locally but felt like it was   ‘frying’ my brain or the chronic pain that was originating on one side would be duplicated on the other side during PT treatment. (Very weird… happen several times and required treatment of both sides even though one side was asymptomatic. I’m just summarizing here what can happen with sustained or chronic pain and not really explaining how.  I learned in hindsight, there was a cost for not having earlier intervention.  I don’t think I would have done it differently because it was not due to my lack of asking for help.  It is a reflection of the usual issues we have with providers.  The only thing I would have done differently was to fly to NM to see the only person I knew prescribing LDN…. or get a referral from him.  In my I spire Journal, I posted twice about LDN in April 2011.  So when an MD showed up locally and a few EDSrs had good results…and I had been dx’d with MCAS since then…. well, it was time.

So what I can recommend to you is that not addressing the pain, in anyway, because you want to know where it comes from is an assumption.  not addressing it runs the risk if it evolving and becoming an entity in itself (physiologically).  Does all pain do this? No.  But it is riskier in chronic pain and unaddressed acute pain.  So all I am sayi g is ‘be careful’ a d as a scientist, know your assumptions! grin)

LDN is being shown to heal the intestinal wall in the Crohn’s patient…. I’m hoping for a positive effect, with regards to that, on my mast cell activation.  I do feel it has affected my gut (PM me for details as it us TMI) and my sense of taste (spicey food is not so spicey anymore… Receptors for capsacium are similar to opioid receptors). Yes, it has been used with those who have auto-immune & cancer dx’s so time will tell with that.  It has had a pretty instant positive affect on me with regards to sleep but that is not the usual from what I hear.  It also has reduced the pressure in my head and a low level occipital headache I had after a trial of butterbur (low level because I took feverfew instead of going back in the Butterbur ).

You know me from Inspire grin. We can communicate or talk by phone if you want more info

Best,

EDS99

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Posted: 05 September 2013 02:46 PM   [ Ignore ]   [ # 5 ]  
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EDS99 - 03 September 2013 11:19 PM

No you can not use it with opioids because it is a opioid receptor antagonist.  Its action on the o receptors stimulates endorphin levels and I believe opioid growth factor. PEA (supplement sold in Europe) can be used with opiods.

Be careful. From what I am reading long term opioid use or very low opioid dosing (I think)  can make for more pain.  Opioids are god for short term.  Pople who use opioids would need to come off of them to get on LDN.

Are you from the Dallas area? My PT just started there.  She is VERY good and knows EDS… She is a 3rd level certified dry “needler”, DPT, LMT, & CERT in conditioning.


Sorry I did not see this sooner.  I am in the Dallas area.  What is your PT’s name, and is she in Dallas or somewhere nearby?  I have been doing PT and other things for years without success.  My body does not respond well to intervention.  The narcotics were last resort, and I have been on them for a 1 1/2+ years.  They help some but not enough.  I have not tried dry needling. How is that suppose to help?  I think my body would react poorly to that.
Shonda

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Posted: 05 September 2013 04:19 PM   [ Ignore ]   [ # 6 ]  
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Drumroll:

PT: Jessica Rossman, DPT, CSCS, LMT

Office:
Allen Sports & SpineCare
1111 Raintree Circle, Suite 150
Allen, TX 75013
(p) 214.509.0029
(f) 214.509.0070

http://www.vistarehab.com/locations/allen/home/

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Posted: 06 September 2013 03:52 PM   [ Ignore ]   [ # 7 ]  
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Thanks

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