[tireesix]

<p>I have fibromyalgia, Ehlers Danlos Syndrome (either hypermobility type or a classic type, waiting for genetic testing) and possible Osteo-Arthritis (there is also a possibility of kidney/bladder issues, I produce too many oxalate crystals and it seems to have made my kidneys 'bumpy')</p>
<p> </p>
<p>Anyway, my back is killing me, I have always had back problems but this past year it has reached a point where i do not know what t do with myself, it is bringing me to tears and I spend most of my time lieing down as a result because I cannot tolerate standing/walking etc (although I have no choice when it comes to the school run and I can't get help for getting the kids to school, I would use the bus but that would involve me walking half way to school anyway and the bumpy, crowded bus doesn't improve matters).</p>
<p> </p>
<p>I get major back spasms at night, have tried quinine but it doesn't do much. I just don't know where to go from here and the Docs are dubious about increasing my pain meds (currently on Oramorph, buperenorphine, oxycodone, paracetamol, ibuprofen and sertraline for depression as well as the odd sleeping tablet) and a ignocaine infusion every 10 weeks. I don't want a lecture on taking pain meds because to be honest, without the painmeds, my life would be intolerable (suicidal thoughts are already something I have to suffer with, I just cannot see how I can cope with this for years to come).</p>
<p> </p>
<p>I have tried physio, swimming, TENS, heat pads, hot water bottles, baths, herbs etc either it doesn't work or the effects simply do not last long enough. I get no release, not even at night where I am woken with it frequently (as well as other issues, night time seems to be the worst for dislocations, mainly jaw, shoulders and knees).</p>
<p> </p>
<p>Is it being caused by the fibro/EDS etc or is it something else? There has to be something I can do thats going to help, the pain kilers do help, sleeping tablets seem to help more but I suffer more the next day if I have them so I usually have to toss up getting an ok night and a crap following day or a crap night and an ok following day.</p>
<p> </p>
<p>This is driving me nuts, walking around would help ease it but even thats not doing anything these days. Apparently I looked so awful on the bus today (I went into town later on so didn't have to deal with the added issues of a crowded rush hour bus) that an old couple asked whether I was ok and I did need someone to hep me, it was kinda sweet yet very embarassing at the same time.</p>
<p> </p>
<p>An occupational therapist came round yesterday and they are going to do a few things around my home to make life a bit easier, unfortuantely the stupid benefit doctor decided that I had nothing wrong with me so now I have no disability benefits coming in. Things are kinda sucking.</p>
<p> </p>
<p>At the moment my back is painful to even touch. I can't afford a chiropractor, osteopath, accupuncturist etc (thanks to the stupid benefits system in this stupid country, everyone seems to think there are a bunch of people out defrauding disability living allowance and yet I know so many people who should be on it who can't get it because its so hard to get).</p>
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<p>There has to be something I can do myself that will help, anyone got any ideas??????</p>

 

[tireesix]

<p>Anyone??????</p>

 

[kjbrown92]

<p>Have you tried ice for the spasms? I know what back pain feels like to that point, believe me. I had 4 physiatrists who gave up on me, 4 bouts of physical therapy, all sorts of pain meds, orthopedists, and all sorts of other doctors, chiropractors, naturopaths, rheumatologists, etc. Most of my back spasms were from food intolerances, believe it or not. When I went off gluten, dairy, soy, and corn (the four most common food intolerances, and also the 4 food intolerances my two kids had in common) I weaned myself off all the pain meds and stopped having to ice my back 8-10 times a day. I still have back spasms if I wear constrictive clothing -- the doctors still can't figure that one out, but they think I have a compressed nerve somewhere, but otherwise, most of my pain is gone. So don't give up looking for a cause. Other things that have helped are cell salts (there's a nerve combination one that has helped a lot). Arnica gel also helps rubbed on my back (by my kids most of the time).</p>

 

[Panserbjorne]

<p>I'd certainly be doing the cell salts.  I'd say similar to kjbrown the nerve tonic and calc fluor.  Also magnesium can be helpful.  I'd also wonder how you'd do with a nice high dose of arnica.  does moving around make it better or worse?  does ANYTHING help it (aside from meds?)</p>
<p> </p>
<p>food intolerances can certainly play a part too.</p>

 

[tireesix]

<p>At the moment, moving around seems to increase the back spasm.  Its not just the spasm though, I am pretty positive that my back bones are shifting in the night causing me other problems (my back and shoulders are my most hypermobile joints, I mean,  my shoulders will dislocate in my sleep so why not my back bones shifting around?).</p>
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<p>I can wake up and my lower back can be red, puffy and intensely painful to touch. I am not sure whether i should maybe be asking to have an x-ray/scan on my lower back for arthritis as well, they suspect osteo arthritis in my shoulders already (I am 29) and also my knees so I guess my back wouldn't be a surprise. One thing that I know makes it worse is stools in my bowel, it seems the pressure can really set it off bad as well but thats not something I can do much about lolol.</p>
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<p> I generally avoid dairy products and caffeine due to intolerance, maybe I could try an elimination diet again and see if there is anything else.</p>
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<p>I have tried hot and cold packs for my back but I will look into the other things you have suggested and hopefully come up with something that works!!!!</p>

 

[Panserbjorne]

<p>calc fluor addresses hypermobility on a cellular level.  It provides the nutrients needed to stabilize connective tissue.  The five phos is rebuilding and normalizing nerve tissue and the nervous system in general.  It addresses pain and fatigue.  They aren't necessarily fast acting, but for chronic issues I can't think of anything better!</p>