It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

  • Feet look just awful, anyone see a foot type of dr for help?

  • Post New Thread   Closed Thread
    Thread Tools Search this Thread
    Old 01-28-2012, 01:06 AM   #1
    hatemyfeet
    Senior Member
    (female)
     
    hatemyfeet's Avatar
     
    Join Date: Jan 2012
    Location: Tennessee
    Posts: 128
    hatemyfeet HB Userhatemyfeet HB Userhatemyfeet HB Userhatemyfeet HB Userhatemyfeet HB User
    Feet look just awful, anyone see a foot type of dr for help?

    Hi, just having an awful time of it with my feet. Does anyone see any other type of Dr for foot care? I am not diabetic, but my feet look and feel horribly. Not sure where to go from here? Marcia? You out there? Sure do need some foot advice or stories about good (or bad ) care that you all have had. I really am worried about my feet. Go from blazing hot to ice cubes with bizarre-o colors with swelling and some itching now and again. Any advice about RSD and our feet would be so helpful. Thank you everyone.

     
    Sponsors Lightbulb
       
    Old 01-28-2012, 02:37 PM   #2
    sswallow
    Member
    (female)
     
    sswallow's Avatar
     
    Join Date: Feb 2011
    Location: UK
    Posts: 95
    sswallow HB Usersswallow HB Usersswallow HB Usersswallow HB Usersswallow HB Usersswallow HB Usersswallow HB User
    Re: Feet look just awful, anyone see a foot type of dr for help?

    A bit worried about giving a reply, because my son's symptoms weren't quite like this - more pain and electric shock burns, but it helped him a little to soak his foot daily in warm water for 5-10 min (with lemon balm added - not sure if that was important, but he seemed to think it made a difference) followed by very very very gentle massage across the foot with warm oil for 10 min.

    I hope you get some relief for your feet soon.

     
    The Following 2 Users Say Thank You to sswallow For This Useful Post:
    Dano1971 (02-25-2012),hatemyfeet (01-30-2012)
    Old 01-28-2012, 02:46 PM   #3
    hatemyfeet
    Senior Member
    (female)
     
    hatemyfeet's Avatar
     
    Join Date: Jan 2012
    Location: Tennessee
    Posts: 128
    hatemyfeet HB Userhatemyfeet HB Userhatemyfeet HB Userhatemyfeet HB Userhatemyfeet HB User
    Re: Feet look just awful, anyone see a foot type of dr for help?

    Hi Ss, I have awful pain and horrific aching type pain as well. Thank you so much for the tips on what helps your son. I am really concerned about the skin on my feet. It looks and feels so awful. I know skin changes are a part of RSD, but boy oh boy this is bad. Thanks again for your reply. I hope your son is having a painfree day. Karen

     
    Old 01-29-2012, 08:33 AM   #4
    feelbad
    Senior Veteran
    (female)
     
    Join Date: Dec 2003
    Posts: 10,122
    feelbad HB Userfeelbad HB Userfeelbad HB Userfeelbad HB Userfeelbad HB Userfeelbad HB Userfeelbad HB Userfeelbad HB Userfeelbad HB Userfeelbad HB Userfeelbad HB User
    Re: Feet look just awful, anyone see a foot type of dr for help?

    ya know karen, getting your meds esp that low dose of MS contin you are on at only 15 mgs 'could' possibly help along with the other two raised up even more possible since they best hit this type of pain better? but that IS a pretty small dose of MS. i cannot currently of course recall the other two, was it nortriptyline and neurontin?? like i mentioned in the PM forum, they 'usually' can be raised up for better coverage too depending upon any given side effects. i do believe you still have alot of room to go upwards on them. my memory is just getting worse and worse along with everything else or i would have recalled your doeses on those too.

    but this RSD crap just sucks, and is soo very hard to rein in that burn he** its sick. i was wondering just how they determined that you have BOTH neuropathy and RSD? they just are so much alike in some ways i would think it would be hard to tell one from the other in your situation?
    have you ever tried the lidocaine patches for like ANY of your extremity/RSD areas? i cannot remember if i asked you that one, or the lido ointment that you can rub into the skin? i was also Rxed what is called 'prudoxin cream' when i was dealing with the very beginning of what is my central pain syndrome while still in the rehab hosp after my spinal cord surgery that ended up also triggering my RSD very shortly after i was discharged. it can help with the pain of RSD too. central pain is a syndrome that occurs thru SCI and its a constant 24/7 stingathon from absolute he** just like the underlying components of RSD kind of is(this feels like a severe second degree burn that just will never ever heal)? i have both RSD and this other crappy stuff to deal with and have used some of the RSD treatments on my central pain and vice versa, since neither one really responds well to just only a narcotic approach. out of the box type pain really does call for more out of the box types of treatments too.

    with the feet being involved, you cannot really totally 'numb' or you risk even more possible problems. but trying smaller pieces of a cut up patch over areas that feel the deepest and most hellish could help? i cut these up and use them like for alot of different pain generators too. and that ointment too can go anywhere.

    how well do you think your PM really 'gets' your RSD? that matters alot in whether or not you should be seeing someone else too or not in many ways. with your feet, you could possibly try sweeing a podiatrist or if there just is someone else in this "line" of specialty that deals more with vascular crap. alot of what is going on with esp your situation is also very much a vascular type of component too. i see my PM most often(every 28 days) but both my really great ortho who had to do my two knee surgeries on that RSD knee in 05 and also did my rotator cuff repair also knows alot about my RSD stuff as well as what is called a physiatrist? this is not a physc doc but a very highly trained physical medicine type of doc that just knows everything about muscles nerve and overall more in depth body mechanics too. he was my rehab doc in the post op phase trying to help me to regain my L leg and get some use back in my L hand. both were knocked out with the L hand severely damaged during my cord surgery. he knows alot about RSD as well. but these are who I see only becasue they just do know alot about RSD among my other sci issues too.

    having the symp blocks done really is about the only thing that has ever really helped me to get that pain down in that knee thru my foot when it goes way beyond what even my TENS will manage. if i have to ramp that sucker up too high, it will create its own form of spasticity. i already have that crap in the L leg and do not need it there too,lol. so when things go beyond THAT for me, THEN i will usually go in for that series of blocks again. but i DO get worse pain before it gets better. the last ones, with the first of the series, my knee just exploded into a nightmare for about six days, but then it DID start to go back down and then under what it had been before i had it done. i just don't know why all blocks seem to do this on me. but you can have the blocks redone too if it has been awhile since youy had them done. it can help.

    as far as your TENS goes karen, when yopu got that unit, did an actual PT person who is VERY familiar with how that unit just works and the best places to place the electrodes get told or shown to you too? if not, someone really does need to actually show you where to place them(a criss cross pattern usually works best to get that current to go 'thru" the worst pain areas and NOT in a line that only runs on the sides of your foot where the trodes are only) and what the different settings just do to help individual pain too. i like the pulsating current myself. but the TENS really can be a very useful tool as well depending on if you can tolerate it, some cant because of very severe hypersensitivity. i just try and stay away if i can from that more hypersensitive area i have.

    just what is it that concerns you most about the feet hon? i know they can hurt like hell and change into wierd colors and i know MY toes have "shifted' a bit too. it is kind of part of this whole nightmare. the stuff i try or use most i think i have either put it here and in the PM forum too. soaking in a bath with a cup of epsom salts which i do more for my muscle damage and spasticity really also seems to help with my RSD too for some reason. its just pure granulated magnesium that you can buy at any drug store. mag is natures lil muscle relaxer, so it 'can' at times help with certain components of pain too depending.

    there just are many different things that make up RSD overall and how any given individuals will actually play out or just what particular symptoms one will have. i have RSD from severe SNS damage done by a scalpel while they were in my cord and other pain syndromes with one on the very same side as where my RSD is too, so 'my' presentation of this has added componenets too to deal with. then there is the other possible pain crap that comes from spinal issues and other stuff we can just have. so it does take a very much multifaceted approach to really try and manage anyones given RSD and overall pain generators and triggers.

    you just keep on trying things to see what really works best for your pain and symptoms. and anything new you can find, just becomes one more little "tool' you can use too for back ups when meds just will not help at all, or during THAT particular flare or day. the more stuff you try, the more things you just 'have" to work with. when you sleep karen, do you try and sleep with your lags raised up some? this is what i do,and i have to kind of sleep in this 'nest' type of thing since my c spine is falling apart too now. my head and upper back is raised up and so are my legs(supported with pillows from right where my butt stops on down to the feet) or i just cannot sleep at all. keeping the legs raised up also just helps to keep the swelling down too. whenever you just CAN, try and keep the feet up above the heart. if the swelling starts to get too way out of proportion, there are dieuretics that can help, but this would be for more extreme since you DO have to be very carefull with balancing out potassium loss with this crap. it requires in most cases to have an Rxed form of potassium, not the little vitamin suppliment stuff that simply does not have enough, and is simply highly unpredictable as to just how much is REALLY in it. so the Rx form is more direct with dosing. so they can be used, but usually left for the worst types of overall swelling tho.

    i hope some of this has helped you karen. but DO have a much more honest and 'telling' next appt with your PM so he now truely KNOWS your pain and how this hell is impacting you and your life, or you just will never get the "appropriate and true types of pain coverage you so desperately need right now. take care hon, marcia
    __________________
    3-22-01,herniated C-6-7
    11-20-01,placement of hardware for failed fusion
    9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

    Last edited by feelbad; 01-29-2012 at 08:48 AM.

     
    The Following User Says Thank You to feelbad For This Useful Post:
    hatemyfeet (01-29-2012)
    Old 01-29-2012, 09:05 AM   #5
    hatemyfeet
    Senior Member
    (female)
     
    hatemyfeet's Avatar
     
    Join Date: Jan 2012
    Location: Tennessee
    Posts: 128
    hatemyfeet HB Userhatemyfeet HB Userhatemyfeet HB Userhatemyfeet HB Userhatemyfeet HB User
    Re: Feet look just awful, anyone see a foot type of dr for help?

    Thank you Marcia, you're the best. Your replys always make me feel better somehow. It is hard to tell which burn is RSD or neuropathy. But burning pain is burning pain. It is evil. It is VERY easy to tell RSD pain when it is hurting. There is nothing quite like RSD pain, deep aching bone type of pain with horrific sensitivity. Just awful. I want to see a podiatrist to make sure my skin is not going downhill. Its so red, swollen, and this weird waxy look and feel in places. Plus the tight shiny bizarre patches. I am just not sure if my PM Dr can address the skin issues. I will ask her. I will also ask her to show me how to use my TENS for better pain control. We are slowly raising my neurontin. I think I need to just hang tough and wait for it to kick in. Thank you so much for all your help. You are such a sweetie! Gonna try to sleep. Have a wonderful Sunday. Karen

     
    Old 02-17-2012, 07:00 PM   #6
    laurav
    Junior Member
    (female)
     
    laurav's Avatar
     
    Join Date: Sep 2011
    Location: Victoria, Australia
    Posts: 33
    laurav HB Userlaurav HB Userlaurav HB Userlaurav HB User
    Re: Feet look just awful, anyone see a foot type of dr for help?

    Hi Karen, we've not met before - I signed up ages ago but changed computers and lost all my bookmarks.

    Definitely get your skin checked out. My CRPS is full body but worst in my feet and lower legs, and I have a terrible time now with the skin on my feet. My feet blister, they crack, they peel - and any open wounds combined with our swelling and circulatory issues really are a recipe for disaster. I've got cellulitis in both legs at the moment - for about the 10th time in three years. It's not too bad this time luckily - I know the signs well and was on antibiotics very quickly, but I've been hospitalised with it several times.

    Marcia's post was hard for me to read because my eyesight is terrible - but I'm pretty sure I saw magnesium and salt baths in there? Excellent idea The baths, and gentle massage if you can tolerate it like Swallow said, can help sometimes with the swelling, and can help with skin issues as well.

    Laura

     
    The Following User Says Thank You to laurav For This Useful Post:
    Dano1971 (02-25-2012)
    Old 02-17-2012, 07:05 PM   #7
    laurav
    Junior Member
    (female)
     
    laurav's Avatar
     
    Join Date: Sep 2011
    Location: Victoria, Australia
    Posts: 33
    laurav HB Userlaurav HB Userlaurav HB Userlaurav HB User
    Re: Feet look just awful, anyone see a foot type of dr for help?

    Hi Karen, we've not met before - I signed up ages ago but changed computers and lost all my bookmarks.

    Definitely get your skin checked out. My CRPS is full body but worst in my feet and lower legs, and I have a terrible time now with the skin on my feet. My feet blister, they crack, they peel - and any open wounds combined with our swelling and circulatory issues really are a recipe for disaster. I've got cellulitis in both legs at the moment - for about the 10th time in three years. It's not too bad this time luckily - I know the signs well and was on antibiotics very quickly, but I've been hospitalised with it several times.

    Marcia's post was hard for me to read because my eyesight is terrible - but I'm pretty sure I saw magnesium and salt baths in there? Excellent idea The baths, and gentle massage if you can tolerate it like Swallow said, can help sometimes with the swelling, and can help with skin issues as well.

    Laura

     
    Old 02-17-2012, 07:31 PM   #8
    hatemyfeet
    Senior Member
    (female)
     
    hatemyfeet's Avatar
     
    Join Date: Jan 2012
    Location: Tennessee
    Posts: 128
    hatemyfeet HB Userhatemyfeet HB Userhatemyfeet HB Userhatemyfeet HB Userhatemyfeet HB User
    Re: Feet look just awful, anyone see a foot type of dr for help?

    Quote:
    Originally Posted by laurav View Post
    Hi Karen, we've not met before - I signed up ages ago but changed computers and lost all my bookmarks.

    Definitely get your skin checked out. My CRPS is full body but worst in my feet and lower legs, and I have a terrible time now with the skin on my feet. My feet blister, they crack, they peel - and any open wounds combined with our swelling and circulatory issues really are a recipe for disaster. I've got cellulitis in both legs at the moment - for about the 10th time in three years. It's not too bad this time luckily - I know the signs well and was on antibiotics very quickly, but I've been hospitalised with it several times.

    Marcia's post was hard for me to read because my eyesight is terrible - but I'm pretty sure I saw magnesium and salt baths in there? Excellent idea The baths, and gentle massage if you can tolerate it like Swallow said, can help sometimes with the swelling, and can help with skin issues as well.

    Laura
    Hi Laura, I cant tell you how much I needed your reply today. Very bad day for me, I think I am grieving over the things RSD is taking from me. Crying all day and feeling like I don't know how I can do this for the rest of my life. My feet are peeling, cracking, with blisters all over, two toenails are loose, and the edema and burning is awful. The deep, deep, horrific painful itching is taking my sanity. I left messages for my PM Dr about my fears about my feet, but I don't think they will call back till Monday. What can PM Dr do to help the skin on my feet? I'm scared. My symptoms are getting worse by the day and I have only had RSD for a year. Do you have the " body jerks" too Laura? My blood pressure and heart rate are going crazy too. Sorry that I am all over the map and ranting...just cant stop crying and I feel so over whelmed tonight. Thank you listening and being there tonight, I needed it. karen

     
    The following user gives a hug of support to hatemyfeet:
    laurav (02-18-2012)
    Old 02-17-2012, 07:46 PM   #9
    laurav
    Junior Member
    (female)
     
    laurav's Avatar
     
    Join Date: Sep 2011
    Location: Victoria, Australia
    Posts: 33
    laurav HB Userlaurav HB Userlaurav HB Userlaurav HB User
    Re: Feet look just awful, anyone see a foot type of dr for help?

    Oh Karen *huggies* I'm so sorry you've got the same problem. And yes, that deep, burning itch - you want to claw your feet off, but the first scratch makes you wish you'd never thought about touching them?

    My baclofen pump (muscle relaxant) helps with the jerks and spasms. The only thing I have found so far to help with the skin on my feet is a cream called DermaDrate, made by a company called DermaTech. I don't know where you are from? My tube says it's made in Australia, so I don't know whether you can get it overseas if you're outside Australia. It's a balm for cracked heels though, so maybe any of them would work?

    Laura

     
    The following user gives a hug of support to laurav:
    hatemyfeet (02-18-2012)
    The Following User Says Thank You to laurav For This Useful Post:
    hatemyfeet (02-18-2012)
    Old 02-17-2012, 08:09 PM   #10
    hatemyfeet
    Senior Member
    (female)
     
    hatemyfeet's Avatar
     
    Join Date: Jan 2012
    Location: Tennessee
    Posts: 128
    hatemyfeet HB Userhatemyfeet HB Userhatemyfeet HB Userhatemyfeet HB Userhatemyfeet HB User
    Re: Feet look just awful, anyone see a foot type of dr for help?

    Oh!! You have the burning itch too?? It is making me crazy. I want to rip the skin off my feet. Thank you for the info about the cream you use. I am going to try tofind it on line. My hubby got me some epsoms salt today and I am going to go soak my feet in it. I am praying it helps. And *gentle huggies* to you too sweetie. karen

     
    Old 02-18-2012, 08:18 AM   #11
    feelbad
    Senior Veteran
    (female)
     
    Join Date: Dec 2003
    Posts: 10,122
    feelbad HB Userfeelbad HB Userfeelbad HB Userfeelbad HB Userfeelbad HB Userfeelbad HB Userfeelbad HB Userfeelbad HB Userfeelbad HB Userfeelbad HB Userfeelbad HB User
    Re: Feet look just awful, anyone see a foot type of dr for help?

    god i feel soo badly for the both of you. thankfully i have not had too many bad issues with my feet, but HAVE had and still have a whoppin type of spasms more due to spinal cord injury. if you use the epsom salts,and are also getting any spasms in the lower torso, and not "just' your feet, take an actual 'soak' in a tub with your legs also under that water too. it DOES readily absorb right directly into the muscles so doing it that way works much better than 'only' your feet.

    one good product out there that is supposed to work really well for this type of really hard/cracked skin is 'aquaphor"(sp)? this just really helps to try and rehydrate really dry areas of our skin with something that is a much better 'overall hydrator' than most creams or ointments.

    using lidocaine patches cut down to fit a speacific area also works well on what is actually more like a 'neuropathic itch' is. i have this too in my shoulder blade where i used to have central pain syndrome. that particular pain left THAT area but left me with some really odd and insane crap, including this itch from hell that will simply pop in and out at will. that is when i place a lidoderm patch over the worst area(s), just to 'numb' that crappy itch and works REALLY well too? they also DO make a lidocaine ointment that is still the same 5% that the actual patch is, but not 'quite' as good as the patch is. but it is a rather heavier type of ointment that has the same consistancy as like vaseline does, so it would help to put on immediately after you soak in any water to best help to hold that moisture still left on your skin in too. just do NOT wipe your feet totally off before using this(just very lightly kind of 'pat dry') since that moisture WILL kind of be forced into the feet with just using the lido ointment and massaging this into the feet. i really am wondering if that product you mentioned you use laura just 'may be' the same 'type' of cream'ointment as the aquaphor that sells in the US? it just sounds like a really good 'hydrator' for skin, just like aquaphor is.

    laura? the epsom salts themselves is actually ALL granualized magnesium(a very natural muscle relaxer), so all you have to do is simply soak in a tub with about a cupful. this really does help even my level of spaticity too. but DO kind of swirl this around in the tub once you have dumped that cupful in there. it can take some water movement back and forth to fully dissolve the granuales sometimes.

    karen, while i KNOW what you are feeling with all the many losses you just feel when anything that impacts us on this much deeper level start to play with our heads. while you ARE most definitely entitled to a lil pity party once in a while, and i too grieved MY losses from not only RSD, but from what generated it as my SCI to begin with, just do NOT "allow yourself" to wallow in it or i can guarentee you, your current depression just WILL get much worse if you do not try and change your thinking patterns in some way to just allow yourself to feel what ARE some real solid positives in your life right now. ANYTHING that is simply 'good' or the people who are actually there for you ARE positives that concentrating more of your emotional/mental energies on, really DOES help alot to try and see things in a bit different and better perspective. sometimes that just CAN take a while to do, but you WILL think of something that is actually either going better, or the many symptoms you do NOT have that you could, just try and be thankful for, since thsoe really ARE positives for you. unfortuently, that just IS what this comes down to in the end, when all is said and done, looking for ANY good in your life and mostly anything positive that you can better concentrate on too. but as i mentioned to you before, just getting onto a GOOD ANTI d TYPE MED ALONG WITH SEEING AN ACTUAL THERPIST WHO YOU can VENT?TALK TO, JUST REALLY does HELP. AND IF YOU ARE GOING FOR ssd, IT is CRITICAL THAT YOUR DEPRESSION ALSO GETS WELL DOCUMENTED TOO BY YOU SIMPLY SEEKING OUT SOME HELP TO BETTER 'DEAL" WITH ALLLL THE CRAP THAT COMES ALONG WITH EVEN HAVING rsd. sorry, dam mit i hit that #%$^&*** caps lock again and i just do not have the energy to go back and fix it all,so just pretend its all okay, K? lol. my fine motor damaged fingers on the L side keep hitting the stupid caps lock ALOT when just trying to hit ONLY the "A" key. stupid fingers!

    also karen,and this IS really important if you can do this hon. when you are just even trying for SSD, the MORE real documented info you just have to support your claim, the better chance you just have of getting awareded.soooo, i would be taking pictures of those feet again and again anytime they simply 'look' horrid. this would simply 'show' whoever looks at your info the 'real' underlying issues going on at your foot levels. also date the pics too. but this IS by far one of the very best ways to "show them"(instead of only you 'telling them') what is going on. also just seeing ANY doc so he or she just sees this and then also documents it too just really helps as well. you just do NEED all and any real 'back up evidence' on any types of injury or syndromes when trying to be awarded SSD.

    some anti D meds, such as cymbalta can sometimes really help with RSD crap too, so that would be a good one to try and start with just becasue, ya know? i personally am, and have been now on lexapro since like 02, only becasue its the only one that we have found after trying MANY others(including the cymbalta too) that took my brain out of what felt like this very deep black ugly place at all. i can always tell whenever i just need any real upping or adjustment of that med since that 'blackness' will creep back in on me. then we change dosages, either up or even back down, at least with the lexapro can help. strange, but going back down after going up on this particular med to 20mgs(and for over a year) down to the 10 i was initially started on actually DID help me tons. do NOT have a flippin clue as to why, it just 'did'. you just also really need a 'venting/good feedback person along with possibly some med help with this one hon. a good therepist combined with a good anti D can do wonders for our depression and the crap we have to just suck up and deal with like 24/7.

    and for anyone who is just suffering spasms or full on spasticity, i have found that for me, only 5mgs of valium really has worked well for me, esp at night when mine seem to 'appear" the absolute worst. i also will 'halve' some other 5mg tabs to take during my day too, which helps during the day just to try and keep any real spasms on a lower more even keel too. and my particular spasticity is from two totally seperate sources. one part is the loss then coming back of my main motor nerve down that leg to my feet during my cavernoma resection that went into my cord, and the other part is from a particular spinal tract that became damaged during same surgery. that one flippin motor nerve has been firing now exactly every other second since that surgical day 'hit/loss, and came back damaged" back in 2003. tho your baclofen pump laura is by far the best that it can get realistically.

    whenever we end up with any level of real damage to our sympathetic nervous systems, it also tends to bring out a much higher overall 'sympathetic tone' as well. and that just does NOT help at all in the 'overall calming' we just normally would have pre damage to. it would make us much more susceptable to not only 'just' spasms or spasticity, but in what i have found with my body ius that like EVERY singlke 'sense' we have has been amplified down to actually feeling pain inside my head 'only' whn i hear certain tones, or noises too? very strange.

    karen, did your BP and HR issues recently start or have you already had this pre onset of RSD? sympathetic nevous sytem damage CAN also impact our BPs(just in and of itself, AND of course having pain flares too) and the overall heart rate as well. when i awoke in recovery post cord surgery where they most certainly hit my symp chain, it was to hearing ALOT of docs and nurses yelling out for what i already knew, since being an EMT for more than a decade, as all cardiac/rhythm meds. my rate and rhythm were just truely all over the place. it took them forever to finally stabilize everything. but i had NEVER ever in my freaking life at ANY cardiac problems, ever until that post op fun. we CAN also in some cases, have some levels of real impact from what is our PARAsympathetic nervous systems too which just will add more crappy stuff that can show itself as system malfunctions and other basic affects/symptoms in/on our bodys too.

    i would just try anything andf everything that you can get your hands on to see what particular product(s) work best for your actual feet issues. and DO please try the lidocaine in BOTH ways(the patches, known as lidoderm 5%, and the lidocaine ointment 5%). this stuff has saved me from sooo many different types of suffering with esp my pain that will NOT at all respond to any narcotics or other types of meds i have tried either. and it also works wonders for neuropathic itch and those ugly trigger points we can also get mostly in the neck/shoulders and blade areas too. good luck hon,marcia
    __________________
    3-22-01,herniated C-6-7
    11-20-01,placement of hardware for failed fusion
    9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

    Last edited by feelbad; 02-18-2012 at 08:30 AM.

     
    Old 02-18-2012, 06:49 PM   #12
    hatemyfeet
    Senior Member
    (female)
     
    hatemyfeet's Avatar
     
    Join Date: Jan 2012
    Location: Tennessee
    Posts: 128
    hatemyfeet HB Userhatemyfeet HB Userhatemyfeet HB Userhatemyfeet HB Userhatemyfeet HB User
    Re: Feet look just awful, anyone see a foot type of dr for help?

    Hi Marcia, *hugs* you always make me feel better. My sister is coming to see me and that has really cheered me up today. She lives over 1800 miles away, and she is my bff so I miss her horribly! I am seeing my PCP about a rx for my depression. I have the lidocaine patches. Problem is, by the time I put them on I am already in agony. So, I need to stay on top of it somehow?At my last two PM appt they commented on my bp being high. My bp and hr have always been low. So, this is not normal for me at all. I hope the clonidine ( for sweats) will help. I have been taking photos of my feet all the way through this so I really hope they help in my ssdi case. My next step is the alj hearing in 6 months or so. I have hired a patient advocate to assist me with it. Cross your fingers for me sweetie. Thank you for all the kind words Marcia. Today has been a better day. I hope you are having a wonderful weekend. Karen

     
    Old 02-19-2012, 08:30 AM   #13
    feelbad
    Senior Veteran
    (female)
     
    Join Date: Dec 2003
    Posts: 10,122
    feelbad HB Userfeelbad HB Userfeelbad HB Userfeelbad HB Userfeelbad HB Userfeelbad HB Userfeelbad HB Userfeelbad HB Userfeelbad HB Userfeelbad HB Userfeelbad HB User
    Re: Feet look just awful, anyone see a foot type of dr for help?

    while i know what you mean by wanting to find that magic 'something' that will keep this hell in check hon, it may or may not be possible. soo, you USE those lido patches whenever you have unresponsive to anything type of pain. this IS what i have to do with my central pain syndrome. it just stings like heck 24/7, then will have insane flares that run down my arm to my pinkie. and that i cannot 'control', so that is when the lido patches come out to COVER that sick radiating area(this starts in my elbow then follows the c 8 T 1 dermatomes down my arm). but for some reason, everytime ANY type of actual numbing occurs to my RSD knee, it will get some really insane spasms a goin like an RLS type of response? so i just cannot use them there, but the central pain, they at least help. feeling 'numb' instead of agony is much much better than having to just 'feel it" and suck it up. why put yourself thru that karen, if you do not absolutely have to. but ideally, trying to prevent that crap from even getting to the agony point is what we ALL really want and need.

    if you cannot get a stable BP, you may,depending upon just HOW UP your BPs are above the norm, have to go onto some type of actual BP med like atenolol or something similar? but trying that clonidine just 'may' also help you. so i would see what THAT does and go from there. you just do not want your BPs to be a sustained higher than norm for too overly long since that alone can generate its own type of kidney damage, and place you at risk for ALOT of potential cardiac and vascular crap too. i already have a kidney and liver disease courtesy of what is polycystic kidney disease i was born with, so for me, keeping MY BPs lower is critical too. i am still usually more on the hypo side like you were too, but as my disease process progresses, my BPs have gone up a bit, but what would be considered more the 'norm' for most? but i usually was about 100-110 systolic? sometimes i was even under 100 too. but not so much anymore. just make sure to discuss you BPs with your doc too when you are there for your depression stuff. i am so happy that something that is going to happen in your life IS making YOU happy too.

    when trying to 'treat' any painful condition and the effects of it on our bodies you just use what you have as the things you have found that DO work til hopefully you can find that 'right' combo of meds/PM tools that will at least knock this down a few notches. and this does include the lido patches hon. do you also have that lido ointment? if not, i would ask your doc about getting some, just so you have it and can try it. tho it does not seem to penetrate down as much as having that patch just sitting there on the skin with constant contact, it CAN work in areas where you simply cannot even FIT a patch(like maybe your toe areas?). i use this for my c spine crap way up in my base of skull into the hairline areas. patches just wont go there. it can take at least the nasty "edges off' in some cases, and that just IS what i hope for, at least the 'edge of the pain brought down, ya know? just bringing down the overall 'intensity levels' of this brand of pain really IS something.

    just make certain that every single thing that is going on with you and your body gets told to your docs so he or she can also document it too for ssd. i am just kind of curious as to why you just did not hire an actual disability lawyer at THIS stage in the ssd game? i was also turned down the very first go round, then hired the lawyer who can by law ONLY take i think it is 25% of your back pay only if they win it for you since at that point, i could have cared less at that poiint about my back pay amount. it was just extremely important for me to just get awarded at all and just HAVE any income again on a regular basis. i also DID write them a few different letters along the way as well when i could not fully explain certain things to them that my body was doing or other stupid crap came up too. and made dam certain that they KNEW without a flippin doubt that when they denied me that first go round my very real depression got ten times worse. which it most certainly DID, since i just had soo much crap going on and was documented(some stuff i did 'assume" was well documented but was NOT AT ALL) by all my many docs that i was almost certain i would be awarded. cripes, i had one hand actually clawing up(looked creepy) from having lost a ton of my fine motor muscles, a leg knocked completely out but got back very motor damaged and spastic, could NOT stand or sit for more than maybe ten min tops, had awoke in the flippin recovery room WITH that sick central pain sysdrome ALREADY just 'there waiting for me to just 'feel its sting hell and totally non controllable and then the RSD also hit me too. i was a freakshow mess.

    but the one thing i found out thru all this and what ANYONE who is deciding to try for SSD just HAS TO DO well before they even begin the app process is get ALL of your own medical files from any doc that you are going to use to try and get benefits FIRST. this is just so YOU know without a freaking doubt just what ANY given doc has actually written and documented about you as far as actual Dxes that you were 'told' you had, but for some stupid reason, that real dx did NOT make it into your own medical files. and if you had a surgery involved that caused ANY worsening of your condition, or was the sole reason this disability occured, you also do have to obtain ALL of what is in that hosps 'central file' on you too just so you can read thru what are called the 'op notes" that by law just have to be made by the surgeon post op. its kind of a transcript of your surgery.

    the thing i found out was becasue of the deep into my cord type of surgery i had to have, it was also going to be monitored by a particular doc(a neurophysiatrist) whos ONLY job in that OR is to monitor my motor and sensory nerve flow velocitys to tell the surgeon if he is in a good place or a bad place where any real damage may occur if he goes ahead with moving a particular area of tissue out. well come to find out that THAT particular monitoring docs op notes were NEVER actually placed into my file which contained ALL of the hits on my nerves and the losses along with when they actually hit my sympathetic chain that generated my RSD.

    that ONE single document missing from my file that i simply 'assumed" was also in there is what caused me to lose my inital case. and boy was i EVER ******. i ended up having to play 'detective' after the intial denial JUST to even find that stupid very critical document. which i DID eventually track down thru the ins co. but it simply 'should have been there and in my flippin hosp file. this is why anyone who is going to do this absolutely HAS TO check out their own records for what is even in them BEFORE SSD does. if you run across ANY actual mistakes when YOU go thru your records before SSD, you CAN fix the mistakes by simply speaking with your particular doc who 'missed something' or forgot something. but once SSD has your medical files, NOTHING can be changed in your medical files(unless you are telling them about a "new' dx that 'just' occured, which you CAN add to, but NOTHING previously IN your records can be changed or altered in any way). i just would very highly advise anyone contemplating SSD or even SSDI to simply call every doc or hosp and obtain everything well before you even apply. after what just" happened" to me with NO fault of MY OWN, you honestly do NOT have a freaking clue as to what is even IN or NOT in your own medical or surgical records til YOU simply DO look thru them FIRST while there is still the time to "fix' them, or right a wrong within them.

    getting denied THEN getting them like i did, simply 'assuming' everything was indeed there and wasn't, just does not always work really well in the patients favor. thats why i am even telling you all this here. it simply does NOT have to happen the way my case did. i also 'lost" over 2 years of my back pay ONLY becasue since SSD denied me that first go round and i was 'considered' to be not disabled THEN(but everything was still physically the same but for worsening of depression and missing intra op notes) they were 'allowed" to actually use my denial date as when i BECAME disabled instead of the two years before FROM that dam surgery that was actual and real. that was sooo sick. just DO cover ALL bases BEFORE you even apply just to make certain that your Dxes and medical files ARE indeed containing every single dx you have ever been given, or like with me, it could come back to blow you out of the water.

    sorry for the length of this post, but this last part having to just 'do" with SSD really IS so very important to even know about now and not the hard way like i found. marcia
    __________________
    3-22-01,herniated C-6-7
    11-20-01,placement of hardware for failed fusion
    9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

     
    Old 02-19-2012, 07:50 PM   #14
    hatemyfeet
    Senior Member
    (female)
     
    hatemyfeet's Avatar
     
    Join Date: Jan 2012
    Location: Tennessee
    Posts: 128
    hatemyfeet HB Userhatemyfeet HB Userhatemyfeet HB Userhatemyfeet HB Userhatemyfeet HB User
    Re: Feet look just awful, anyone see a foot type of dr for help?

    Hi Marcia, I went with an advocate because I really felt they would help me more than a lawyer. But I think I will call a lawyer and get more info on what the difference is. My advocate worked for ssd for over 15 yrs and really knows the ins and outs. Now I am wondering if I made the right choice. I am going to go on the disability section on here and ask other people about their alf and if anyone went with a advocate too. Not feeling to good tonight, upset stomach, hope its not flu. Thanks for always being so wonderful Marcia.

    Last edited by hatemyfeet; 02-19-2012 at 07:51 PM.

     
    Old 02-20-2012, 07:21 AM   #15
    feelbad
    Senior Veteran
    (female)
     
    Join Date: Dec 2003
    Posts: 10,122
    feelbad HB Userfeelbad HB Userfeelbad HB Userfeelbad HB Userfeelbad HB Userfeelbad HB Userfeelbad HB Userfeelbad HB Userfeelbad HB Userfeelbad HB Userfeelbad HB User
    Re: Feet look just awful, anyone see a foot type of dr for help?

    you may have actually made the very best choice for you karen, who knows. i have just never heard of the patient advocate thing unless it was in a hosp type setting(now THAT type of PA i have had while IN hosp, but of course for different reasons)? but consulting with a good and actual 'disability lawyer' that you see ads for ALOT on TV(i DO know we see them all the time here in MN, and one particular ad is also one of the ones i ended up going with who helped me win my case too), or just looking for that heading in the yellow pages to find one may not hurt you to just see what 'they' can do for you vs the advocate. that is all i am really saying, ya know? and they DO also take 25% of your back pay too, but ONLY if they win your case for you, so they DO have a good incentive to also win for you compared to what i would think the PA actually does(i am thinking that PA just IS some type of a volunteer, or am i wrong?)? just even getting paid for doing ANYTHING for anyone IS a pretty strong motivation vs someone who is NOT going to be getting paid? like i mentioned above, i could have cared less about the stupid back pay portion that my lawyer got, my main goal in the end was to simply try to replace just a freakin income on a regular basis that i could simply 'count on'. tho it is not at all what i HAD been making, at least it IS a regular 'monthly' income that i just KNOW will be there for me

    may be you could even utilize BOTH people, that PA and a lawyer?? not too certain how that would actually work, but you can check that out as well.

    but by all means DO check out the disability forums here on HB karen. they really did help me TONS when i was in the applying and thru it during all stages. there are other people who are in your same posistion along with 'some' people i know i 'chatted with" who also once worked for disability too that simply also post on that forum. so it is a pretty reliable source of info. every little bit just really CAN help you out with this process. good luck karen, marcia
    __________________
    3-22-01,herniated C-6-7
    11-20-01,placement of hardware for failed fusion
    9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

     
    The Following User Says Thank You to feelbad For This Useful Post:
    hatemyfeet (02-21-2012)
    Closed Thread

    Related Topics
    Thread Thread Starter Board Replies Last Post
    has anyone tried a laser therapy? numbing hands Reflex Sympathetic Dystrophy (RSD) (CRPS) 10 09-12-2007 04:05 PM
    I Just Had The Worst Experience With A New Doctor In My Life msswank95 Reflex Sympathetic Dystrophy (RSD) (CRPS) 7 11-20-2006 09:13 PM
    Anyone have RSD in their Foot? annielou Reflex Sympathetic Dystrophy (RSD) (CRPS) 16 10-27-2006 08:08 AM
    Does anyone know if this could be RSD? beage Reflex Sympathetic Dystrophy (RSD) (CRPS) 14 05-04-2006 07:08 AM




    Thread Tools Search this Thread
    Search this Thread:

    Advanced Search

    Posting Rules
    You may not post new threads
    You may not post replies
    You may not post attachments
    You may not edit your posts

    BB code is On
    Smilies are On
    [IMG] code is Off
    HTML code is Off
    Trackbacks are Off
    Pingbacks are Off
    Refbacks are Off




    Sign Up Today!

    Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

    I want my free account

    All times are GMT -7. The time now is 01:16 PM.





    © 2020 MH Sub I, LLC dba Internet Brands. All rights reserved.
    Do not copy or redistribute in any form!