Those days when it's closer to give up than fight - Pain Management Message Board

ld3340 · 05-21-2006, 09:57 AM

Hi, If you are on these boards, and especially here, you are looking to feel better for yourself or maybe the one you love. I am having one of those days like the title says, It is closer to give up than fight. I was injured in a fall down a stairs at work with a armload of tile. I broke off some spurs when I landed on my hind end, and because the MRI showed DDD, I have been unable to get comp to do much, but fight in court. I am at 19 months, and it feels like the day after the fall. I have had no treatment beside PT, which was done for 6 months, and only made things worse. The rest of the time has been nothing but the pain meds, and searching for ways to get fixed. I ran out of assets within the first 6 months, and have been relying on family to support me and my son, oh, and Human Services from the county, which have been very good to me. Unfortunately with this and many other problems there is no middle ground, either you progress or regress. Staying in the middle doesn't really happen for to long. About two months ago, I started having a little more swelling in my left leg, and within two weeks I was in Emergency with cellulitis and a very swollen leg and foot. The antibiotics cleared the infection but not the swelling. Now, I have Lymphedema. They say it's rare, but I'm not so sure. The Vascular surgeon I see says there is no cure, only comfort. It is painful, my skin is bright red and feels like fresh sunburn. I hurts right to the bone, and my foot is huge! Finally I have a decent size to my knee, but only one! Well, as you can guess, there is no pain meds for this, I am maxed out on my low back, so, this I just have to deal with. It has cut down my time outside by 80%. I am not even comfortable just sitting. I have to shorten this up, thanks for reading. Has anyone else here had Lymphedema? Is there any good ways to take some of the pain away? LD

Kay14 · 05-21-2006, 04:24 PM

Hi LD, I know what you are feeling, believe me I know. When I was coming off of Methadone you said some kind words which touched me deeply and gave me hope. I want to thank you for that.

When life becomes more than I can bare I go to my book, The Prophet by Kahlil Gibran. He writes of pain, "Your pain is the breaking of the shell that encloses your understanding. Even as the stone of the fruit must break, that its heart may stand in the sun, so must you know pain....It is the bitter potion by which the physician within you heals your self. Therefore trust the physician..."

And of joy and sorrow he writes, "Your joy is your sorrow unmasked. When you are joyous, look deep into your heart and you shall find it is only that which has given you sorrow that is giving you joy....Together they come, and while one sits alone with you at your board, remember that the other is asleep upon your bed."

I wish you peace, LD. Sincerely, Amy

ld3340 · 05-21-2006, 08:09 PM

It has given me peace tonite, thank you Amy. LD

feelbad · 05-22-2006, 07:10 AM

sorry for all you are having to deal with here,really.I just had to comment on that foot pain?have you done any research on RSD? I am thinking,in just what you have described here that this may be what is actually going on with you.everything you described as far as actual symptoms(the overwhelming excruciating'down to the bone' type of pain,color changes in the affected extremity,and the swelling)those all fit with this nasty condiditon.I have RSD in my R knee and it feels like this non stop pain a thon from hell.my knee and lower leg will get red from time to time but it is not a constant(this can be different for each case)some people will actually have their affected area turn anything from red to deep purple in color.the hypersensitivity to even slight touch is also a symptom.i have the most nasty very deep bone ache that feels like someone hit it with a sledgehammer or something.it is a constant deep migrane like pain that is just in the head of the femur.and the BURNING is horrid and non stop too and is probably the biggest symptom of RSD and also central pain syndrome that i also have in my L arm.i really DO think this is a very likely possibility for you to have aquired.

just exactly what was injured in that fall?what does your MRI report actually state?somewhere in your spinal column,you very well could have injured some part of the sympathetic chain that actually runs down along both sides of the outer sides of the vertebrae,this would be the trigger for the RSD to have started.my SNS was damaged way up in the lower c spine from a spinal cord surgery.

i really would just do some googling on RSD and compare your symptoms.and see what you think.i would also very highly reccomend that you file for disability.RSD is now much more recognized by them as a permanent disability depending on the actual symptoms and how it affects your daily living and ability to even work.You should also bring this up to your vascular surgeon,I am kind of suprised that he has not mentioned this condition to you,as I am pretty sure that this type of surgeon would definitely be very much aware of this possibly being your biggest issue here.this condition also involves a certan level of vasomotor malfunction,I am wondering just exactly why you were referred to him in the first place??I am also wondering if when he told you "there is no cure,only comfort"if he has already Dxed you with this and just has not actually told you this yet/you definitely need to ask him about it.

I just really do think this is what may be going on with you,you described so many of the same symptoms I have,to a "T".I have a ton of problems in my R leg nowalong with just the RSD actually being there.my swelling is constant and has never ever completely gone away in over the two and a half years since the sydrome started.its just always there now.

The absolute best type of meds for this particular pain are the anti siezure meds.i had been on neurontin and was wayyy before the damage happened to my spinal cord just from the pain of my c spine problems.but when I started at my pain clinic,i was switched to gabitril which worked much better but makes me sooo tired that I can only take one dose in the morning and have totake the other three pills before bed.it makes for good sleep tho.i will be starting lyrica this next month as I really have to have something that I can take thru out the day.i recently had to have two surgeries done on the RSD knee for many other problems and since then the burning has really gotten way out of control now.it got soo bad that I have started taking the gabitril during the day now.lots of naps with this crap.but it helps with the burning issue.oxycontin seems to do nothing for the actual burning but it does appear to have some effect on the deep bone ache stuff.a also use the TENS unit which really really helps tons with the flares.the TENS was actually the first thing I tried where I could really actually feel a reduction in my pain flares.just something you may want to try.
getting to a good pain management doc would really help you alot in giving you the many different options you can get only thru a good pain clinic.mine was truely a lifesaver.

to really get a good idea on whether this pain/condition is really stemming from some possible form of sympathetic nervous system damage,talk with your surgeon about referring you for a sympathetic nerve block.if you get any sort of actual relief from this,then it is most likely being generated by sns damage.tho this test is not foolproof,it is just one way of trying to see if this is indeed possible RSD.The sympathetic nerve blocks also can really help with the overall pain and in some cases can actually put it into kind of aremission status,at least for a while.

the big thing here is to get this aggressivly treated with things like the symp blocks and desensitization therepy,as soon as possible. the earlier treatment is started with RSD,the better response you will get,as far as being able to possibly get that pain level down and possible remission.tho this will only actually occur with only some cases.my particular one was not the best as far as response.

but seriously,start doing some in depth research on RSD which is also called CRPS(complex regional pain syndrome),an see what you think.and most definitely speak with that surgeon about this soon.

i would also start the application process for disability and ssi.whether or not you decide to actually do this is pretty much up to what you still feel you are able to do and not do and your actual ability to still even work.the process can sometimes be kind of lengthy and you will need to gather up all of your medical records and any records from anyone who has ever layed a hand on you or anyplace that you have been sent for testing.ask your surgeon just what he feels about the disability thing.if he actually does think that what you have is really RSD,most likely he will be one hundred percent behind you on this as the prognosis for most RSD patients is not real good.unfortunetly,this can spread to other areas too.

hopefully this may be something less dramatic,but quite honestly from what you have actually described as far as symptoms,I really do think this may indeed be what you have going on.and I AM really sorry about that and DO know how you feel right now.it really does suck.

also speak with your surgeon about referring you to a pain clinic.they can do those blocks right there at their clinic.i really do think a good pain clinic would really be your best bet for being able to actually get the best treatments for pain control.like i said,mine was truely a lifesaver for me.

sorry this was sooo incredibly long but I really wanted to explain just what you may be dealing with here.good luck and please keep me posted on how you are doing with all of your issues.start doing that research soon.there is a really good RSD board on these healthboards,its just a scroll on down below this one.you should check it out,there are some really wonderful caring people there who are living with this too and would be able to answer your questions.Hang in there.Marcia

daylilyfan · 05-22-2006, 04:16 PM

I have RSD also.

When I read about the pain, infammation, burning, redness.... bells were going off in my head -- this person has RSD!!!

I wonder if the vasucular doc maybe does not KNOW what RSD is???

If it sounds like you, go on over to the RSD board here, and there are other RSD boards online too - you will learn so much from them.

Next step would be to get to a first rate pain management doctor as soon as you can. Make sure if your doc makes the appointment, or if you do that RSD is mentioned when making the appointment. IF they are worth going to - mentioning RSD usually takes a lot off the waiting time to get in.

Some people find physiatrists, or neurologists can be of help, but you'll want to also get to a physical or occupational therapist soon - but also make SURE they are very familiar with RSD. Many people with RSD travel a long way to see docs/therapists that know RSD. I went to a local occupational therapist when I was first diagnosed, and he said he had treated RSD. He pushed me to hard, and actually, I believe, made the RSD so agitated, it spread some. I now go almost 3 hours to one who has treated many many people.. I just go every once in a while and get a 6week to 2 month plan at a time.

Please check it out. I am not sure if I can give web sites here, so Try googling these

for grace RSD

H. Hooshmand, M.D. RSD

Robert G. Schwartz, M.D. Reflex Sympathetic Dystrophy Support Group Medical Director

I hope this is NOT what you have. But if it is, there are things you can try to make a difference.