Joint hypermobility disorders :

Some wierd questions for ya - - Posted by Erin (Erin), 18 July 2003

Hey, I was trying to figure out where to post this, and I guess this section is good.
I was wonding if anyone has had problems with not getting any relief from pain pills. Also Ive had a nerve block for a knee surgery and that never relieved pain. After my ankle surgery they numbed that up, but I didnt get relief from that either. I know I have some hypermobility (or thats what a PT has told me). And its getting wierd how I can just let my right shoulder fall out of joint. Im begining to think that my pain is coming from being loose jointed, since no one never knows why Im in pain.
But has anyone had problems with not respoding to pain pills or blocks?
Erin
Posted by Stacey (Stacey), 19 July 2003

Hi Erin

I dont know whether it is common or not but i get very minimal relief from pain pills.  Ive never had a block though so cant answer you that.  I know that there is some information about EDS III not responding to dental anasthetic or something like that

Stacey
Posted by Maz (Maz), 19 July 2003

Erin,

I know how it feels to find pain pills don't work.

I think it depends on which ones you take and for how long.

I used to think Ibuprofen was my wonder drug. I took 2 when I had a headache and saw instant results..... but haing taken them after my last knee surgery for a while they stopped working, and became inneffectual, even for a headache. I wonder whether your body gets used to some and they stop working?

I always found paracetemol didn't work, same for asperin and tylenol (acetomenophen?). When I had my first ACL reconstruction on my right knee 9 years ago I was given morphine. It just made me feel in pain and drunk, rather than pain free. I just felt in pain but groggy like someone was trying to take my control away (very upsetting for a slight control freak like me) and crying in the middle of the night post srugery, I asked they take the 'morphine watch' away and give me the Ibuprofen which was weaker, but worked for me then...the nurse thought I was insane.

I just seem to have become accustomed with living with constant pain. I read in newsweek a couple of weeks ago, that some people who live with pain gain a syndrome called, ironically, 'chronic pain syndrome', where the slightest touch can cause pain. I read it and counted myself lucky that in general I don't suffer too badly... as long as I don't have to walk!

I also had a percocet and toradol mix after my last surgery which seemed to work, but is hardly a long term option. On percocet I could spend the whole afternoon watching reruns of bewitched, and gazing at the ceiling! Toradol was the real pain killer, but rots your stomach if you have it for more than a couple weeks.....

Any over the counter wonder drug recommendations would be gratefully received here!

My suggestion is try something different and see if it works for you.

By the way....an occasional Gin and Tonic seems quite good for me.

Maz
Posted by Lizzie (Lizzie - UK), 19 July 2003

Hey Erin

I also suffer from not getting any relief from pain meds.  My GP is really good with me and understands how I am feeling.  He is very keen on prescribing the right medication for the right syptoms.  

He has told me that he is 6'2" and weights approx 16 stone and the pain meds that I am on would knock him out for days, whereas they just seem to take the edge of the pain I am suffering.

Apparently this is part of HMS/EDS.  I always wondered why when I went to the doctors for dental treatment and they would have to give me a few injections of lignocaine and it still didn't work until I was on my way home, after they had had to do the painful work!  Maybe that is why I hate having dental work

At the moment I take Dihydrocodeine 60 mg 4 times a day and also Tramadol 100mg 4 times a day, together with Celebrex 100mg 2 times a day and if necessary a Diazepam 10mg at night!!  Bit of a c0cktail of drugs, wouldn't you say!

Hoping that you can find some relief from the pain that you are suffering with.

Lots of love
Lizzie xxx
Posted by Maz (Maz), 20 July 2003

WOW,

Lots of new names I don't recognise in that cocktial, but they sound like prescription meds. Are any of these over the counter?

Maz
Posted by Shazinoz (Shazinoz), 20 July 2003

I too am an EDS'er and I too take a mixture of meds to help keep my pain under control.
I take MsContin 60mg twice a day, Neurontin 800mg twice a day, Vioxx 25mgs a day, Adalat Orus 60mg a day (this is for my RSD), and a number of suppliments also.
It is a part of HMS/EDS that you don't respond normally to pain meds and also common in most chronic pain conditions as your pain settles in or takes the occasional jump or you get a new injury or even your body gets used to it.
As to nerve blocks and local anasthetics, it is known that in EDS -H people do not respond normally or at all to local anasthetics (I am one) due to part of the fault in the body that makes the EDS-H. There is a bit of research on the net about it and they recomment a test of this to see if you have EDS-H instead of HMS...
I don't get given nerve blocks due to my RSD anyway and now also I guess due to my EDS-H diagnosis.
I have tried a LOT of the pain meds on the market over here and a lot of them either don't work enough of I am allergic to.
SHaron
Posted by Erin (Erin), 20 July 2003

Thanks all for responding to my question. Im about ready to go crazy with this pain, as its almost been 6 weeks out of surgery, and Ive yet to have relief. I though that after I got the cast off my pain would go away, since my joints dont like to be confined in one place for to long, but my theory has been proven wrong, and Im in worse pain now. I think Ill talk to my PT on Monday to get his ideas about this pain.
Im just really wondering why I never get relief from pain pills or blocks? Im definitly going to ask lots of questions Monday. Lets hope that I can get this pain under control and get on with life.
I wish all you others out there some pain free moments too.  
Erin
Posted by elasticlizzy (elasticlizzy), 15 September 2003

you say you r hyper mobile me too i have had recuurent dislocatons of both knees my ankle has been twisted so severely that the doc said a normal person would of had a compound fracture. you say you still have pain even with nerve blocks and pills i dont mean to sound as though im trying to say you r stupid but this might be a help when i had my knee op i had a spinal and it blocked the pain but the discomfort was still there which was sometimes worse than the pain and still is for that matter so could it be possible that you r not experiencing pain but severe discomfort? its a long shot i know and your probably sat there saying stupid cow i know what imn feeling but just thought id let you know your not the only one x
Posted by Shazinoz (Shazinoz), 15 September 2003

I for one feel both but the sharp stabbing pain like someone is sticking a burning white hot knife into me and my joints and twisting it so that I feel physically sick, dizzy, gasp and sometimes can't catch my breath and nearly faint, is DEFINATELY pain and NOT discomfort. Everyone is different even those with Hypermobility/ HMS and or EDS or any of the other connective tissue disorders, so what is true for you may NOT be true for others and visa versa, I am glad that blocks work to remove your pain, but wish they could also remove your discomfort.
The same as we are all different some of us may "only" be hypermobile while others may have "HMS" or "EDS" or "O.I." or "marfans" or one of a multitude of other disorders that have hypermobility as a symptom (everything from hypertonia to down syndrome and a WHOLE lot more), or you could just be more flexible than is normal.
I have had an eidural (put in after my first knee reco. (while I was under the general anasthetic)) and it worked for me by removing my pain post op, and I have had nerve blocks and they have made my pain worse sometimes or not worked (my blocks were for PAIN (I have RSD as well as EDS-H) and made me worse   ).
Sharon

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