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    Old 08-19-2004, 11:15 AM   #1
    despnhurtn
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    Question Just diagnosed/RSD in foot-HELP

    Hi all, been reading posts for about two weeks. Had bunionectomy 3/23/04, with v cut to big toe bone and two screws. Long story short, Dr. had me weight bearing on what they call a nonunioned metatarsal head (big toe bone joins to foot) due to aggressive PT therapy, weight bearing and flexing toe while toe was not healed I experienced excruciating pain and RSD set in. After almost five months I found another Dr. that immediately diagnosed the RSD (two weeks ago) and did a CAT scan on toe that confirmed the toe still has not healed. Osteo has set in. Dr. said two weeks ago to get off my feet need to wait one more month for healing then a bone stimulator to finish healing. There is a lot of scar tissue making the toe stiff and painful. Prior to getting off my feet, the foot would swell, burn terribly, turn terrible purple and have some electric like shocks on top the bone pain in toe. Since I have been off my feet for two weeks, RSD has diminished, however I can't sit with foot on floor, it begins to burn and turn purple but not swell. Dr. says I amin beginning stage of the RSD and recommends I do nothing about it. Says neurologists and pain managers are way too aggressive and makes matters worse. This Dr. is a podiatrist, good one though, was team Dr. for the US Women's gymnastic team and a Famous football team. He says three months after the bone has healed he will put me under and hand crank the scar tissue off the toe, may have a few bone chips but should heal nicely..then all pain related to my toe will be gone and rsd should be fine. Doesn't want to do surgery to remove scar tissue due to cutting into nerves,etc. He also feels any pain I'm having now is due to my body getting used to the hydrocodone I have been taking. Please note, I go three days without any since I have been off my feet. I don't feel I'm addicted at all. I know I need different meds as narcotics do not address RSD well. Sometimes though even off my feet the right side of my foot starts burning like crazy and little shocks and throbbing start so I end up taking the meds. I am concerned about leaving the RSD as is because what I have read is the earlier you get treatment the greater the chance of containment for even reversal. I think my good foot dr is looking more at the problem with the toe than truly understanding the RSD condition. My Cobra insurance runs out 12/31/04, Ihave not been able to work for five months, savings running out, will not be able to work for questionable time ahead. Should I seek help for RSD while I am down waiting for metatarsal head on big toe to heal? Or wait for it to get worse? I value your guys opinions as you have experience and researched knowledge about this condition. Thanks so much....Beth

     
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    Old 08-19-2004, 01:56 PM   #2
    RSDtrinity
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    Re: Just diagnosed/RSD in foot-HELP

    It is true that the earlier the treatment the better the result, but is also true that not everyone gets better or has remission. Have you looked at ********** they have tons of information on that website. I would definately look into treating the RSD sooner rather than later. I myself have noticed that anything that happens to my RSD limb it takes 10 times a long to heal. (ie, I wore some boots one afternoon and they rubbed sores on both feet. the regualr leg healed in about 4-5 days where the RSD leg is still working on healing 4 months later.... ) You might be waiting on healing for a longer time than you think. RSD affects us all differently and each treatment affects us differently. Some people do well on meds, some do well with SCS, some do well with the pump. Treating RSD can get frusterating because it's a trial and error system. Just make sure that you don't give up and you don't underestimate and under-state your pain... The docs need to know, because otherwise they can't treat... Hope that helps.. - Jessica

     
    Old 08-19-2004, 03:18 PM   #3
    despnhurtn
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    Re: Just diagnosed/RSD in foot-HELP

    Thanks Jessica - It is confusing, since it has gotten better since I'm off my feet. My family physician, whom I love, has been on vacation and will be back Monday, his nurse squeezed me in for a l:00 appt, I'm hoping he will have some direction for me. He is the most compassionate man, so much so my 18 year old daughter loves to go with me just so she can see him. She loves the way he takes care of us. Perhaps he will know someone familiar with this. Thanks for your advice, I some glad this board is here...Beth

     
    Old 08-19-2004, 04:47 PM   #4
    KateInAustralia
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    Re: Just diagnosed/RSD in foot-HELP

    Hi Beth, welcome to the group.

    In my opinion, if RSD has been diagnosed, you really should see an RSD specialist or pain management dr. You don't have to follow through with what they suggest, but I think its important to see what they think. Like you said, your podiatrist is a podiatrist and may be a great one, but he may be focused on repairing the foot and not taking into consideration that RSD can be made worse by having further surgery or painful (which it must be if he needs to put you under) manipulation on the area.

    I had my first treatment and diagnosis at the six month mark, which is meant to be right on the line between long term rsd and being able to have remissions. Although I still have RSD now 3.5 years later, I have held off alot of the symptoms, been on basic meds, and have had months of low pain levels at a time, and even long remissions, which I think is due to the early treatment.

    I think its worth getting an opinion on the rsd, but that dr needs to work with (or maybe at least talk to) your podiatrist so that they can both do what's best for you.

    In my opinion, waiting for it to get worse is not worthwhile, as if it does get worse it may need more aggressive treatment.

    Like Jessica said, keep doing your research, sounds like you're already getting well informed which is the best thing you can do. There are a lot of great RSD sites, some much better than others, but unfortunately we can't post links! I find Dr Hooshmand's website is very informative. If you do a search under his name it'll find his website for you. There's heaps of general RSD info, then a "puzzles" section that gives all kinds of scenarios and topics related to RSD.

    Good luck, keep us in touch with how you are doing, and ask us any questions you like- I've found this group to be so helpful and supportive!

    x Kate

     
    Old 08-19-2004, 06:16 PM   #5
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    Smile Re: Just diagnosed/RSD in foot-HELP

    Hi Beth,

    Welcome to the board. I agree with Kate. If I were you, I would definitely be seeing an MD for a second opinion. I think you should consider a pain management doc as they seem to know the most about RSD. I think you're probably right about your pod thinking more about the structural problems in your foot than the RSD. That's been my experience with my ortho surgeon as well. I really can't see how prolonging treatment for the RSD will help at all. At the very least, it doesn't hurt to get a second opinion from a pm doc. That's good that you have faith in your primary doc. Hopefully he'll have some advice to guide you. Good luck.

    Sharon

     
    Old 08-20-2004, 07:13 AM   #6
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    Arrow Re: Just diagnosed/RSD in foot-HELP

    Good morning Beth and Welcome to the Boards. !! This is a great place you have found and we are glad to have ya !!

    I have RSD in my Rt foot and it started from a foot surgery to remove a growth on the nerve. about 4 days after the surg my great toe started turning purple and funky pains and electrical shocks went through my foot and then started to swell. My podiatrist was not aggressive in my treatment and just kinda blew it off like yours is doing and just "played it by ear" and with in the 4 mos after surg, my foot was deformed and was inverted so i can only walk o nthe out side edge of my foot nad the rest is up in the air, i am unable to wiggle my toes or move my foot at all bc its frozen in a locked position. My foot still turns blue, purple and is soo swollen and i cant touch it and it has been 2 years and i have 2 stim implanted in me to try nad calm the RSD down bc it has started to spread to my back and my other foot. and you dont want to have surgery on your RSD foot, it will only make the RSD worse and flare it up and make it spread along with any ice application!!

    But my point is that you NEED to see a pain doc and have him be aggressive or else you will end up like me and so many other people here on the boards. You also posted that you have COBRA insurance as do I and mine also runs out in october but bc i am on social secruity disability it has been extended another 13 mos, are you on SSD also??

    Good luck and look into seeing a good PM doc, you need to be aggressive with any RSD diagnosis and its nothing to be messin around with and po po iing it either. ! hope to hear from you !!

     
    Old 08-20-2004, 10:47 AM   #7
    despnhurtn
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    Thumbs up Re: Just diagnosed/RSD in foot-HELP

    Thanks everyone for your quick responses and your warm welcome. Your viewpoints reconfirm my gut feeling about pursueing this with a neurologist and pain manager. I had read Hooshman's site and copied much of his info, then called about treatment there, but cost prohibitive. They said contact local support group for Dr. info. The head of our Wisconsin group is great and is going to help me find DRs. in my HMO. In Wisconsin to qualify for SSD, you must be disabled currently for 6 months (I'm at 5) and a Dr. must confirm RSD with at least one more year of disability. Cobra will not extend without SSD confirmation, so by the time it gets worked out with a probable first time turn down, It will be too late for a Cobra extension. I'm in a catch two situation with a nonhealed great toe, time to let it heal, what to do about scar tissue (I agree Kate, hand manipulation sounds too aggressive to me also) problem is it won't go away on its own and it makes it very painful to walk which then that aggravates the RSD. I will need a referral from PM, so will see what he knows about this condition. Pain is quite manageable if I totally stay off my feet, so am weaning off Hydrocodone, even though I hadn't been taking it regularly. I know I need to be off that in order to get on to better RSD meds. Thanks all for your help, you have so much given me peace in pursuing this further, the confusion was driving me more crazy than the RSD. I will certainly be back to update....Bless you all in your struggles, this is so hard...Beth

     
    Old 08-20-2004, 06:08 PM   #8
    RSDtrinity
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    Re: Just diagnosed/RSD in foot-HELP

    Another thing to remember is that you have to use the limb (to an extent) otherwise you'll have more problems as well. With RSD it's a balance... Use it enough, but not too much to cause undue pain. Glad to see that you have found the help and information you need. Feel free to ask us any more questions you might have. - Jessica

     
    Old 08-21-2004, 08:15 AM   #9
    despnhurtn
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    Re: Just diagnosed/RSD in foot-HELP

    Thanks Trinity, From this board and other internet info I figured out that I should use it to the point of pain,etc. So thank you for the confirmation. What is weird is up until two weeks ago I could sit for about an hour with the foot down with not problems, but I was weight bearing and walking alot with excrutiating pain and horrible pain at night. Now I am putting no weight on the forefront of my foot where the met head is not healed and scar tissue is stiff, but I can not sit with my foot down without the purple,tingling, shock feeling starting right up. I get up many times a day for 2 to three minutes without standing still. Walking a little is OK, not standing for sitting with foot down. This is really weird. When I am laying with foot up on couch, I try to wiggle toes as much as they will let me until pain starts. I don't want to lose the little flex I have in that toe. Read on Hooshman's site Epsom salt baths are good, so will try those today. The hardest part of this is to watch my daughter (18) and son (21) having to take over everything, cleaning, cooking, laundry, mow 3 acre lawn, etc. They are great kids, never complain, but taking over everything has certainly limited their social lives.
    I never wanted to be a burden at 80 let alone 52. But we look around and
    there are many people with more tragic things on their "platters" than this.
    It just must take time to adjust to it, accept it and do the best you can in the midst of it. There are days tho that I can get pretty depressed worrying about insurance, meds, finances, etc. Thanks for listening, hope to have something good to share next week....Beth

     
    Old 08-21-2004, 02:02 PM   #10
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    Re: Just diagnosed/RSD in foot-HELP

    Hi Beth! Welcome! I'm new here myself, but you'll love the people here. Very supportive! As for your question, I agree with Sharon and Kate. You should see a pain management or RSD specialist. I'm sure your podiatrist is a very efficient doctor, but you'll get your best information and advice from a doctor that deals with RSD everyday. You don't have to follow that advice, but a second opinion never hurts, right? I have RSD in my left wrist and arm, and was seeing an orthopedic doctor at first. He was trying to deal more with the wrist injury than my symptoms of RSD, telling me that it will just take time to go away. My gut instinct was that something just wasn't right in my wrist, and prompted me to contact another orthopedic doctor. He diagnosed the RSD right away and referred me to a pain management clinic, which was one of the best things that ever happened to me since I've had RSD. My pain doc is great and really helpful. There are some things that he has recommended for me that I have declined, and we just move on to something else. You have a voice in your treatment and you don't have to comply with anything you don't want to do. By listening to the first ortho doc for the first six months and not treating the RSD, mine progressed and we had to do more aggressive therapy once I did get into the pain clinic, but that doesn't mean yours will. All cases of RSD are different, which makes it such a difficult disease to treat. I just wanted to share my thoughts with you and let you know that sometimes that instinct is telling you something worth listening to. It can't hurt to explore all of your options, you know? As sufferers of this, we all have to take part in our treatment and be a little agressive ourselves at times. If one doctor won't listen to your concerns, find another that will, if possible. I wish you the best and hope that things work out for you. Keep us posted.

     
    Old 08-21-2004, 10:48 PM   #11
    RSDtrinity
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    Re: Just diagnosed/RSD in foot-HELP

    You brought up another common symptom of RSD pain. It changes every single day... Today you might be o.k. with it down for 30 mins until the purple and pain, but tomorrow it might only be 5 mins before it starts. If you weren't a flexible person before, you will be one now. (he he he).. That is one of the things that makes RSD hard for those who don't have it to understand.... One day you might have the strength to mow the lawn, and one day you may just sit and cry in bed all day long because you can't get up... I used to be meticulous with cleaning and everything was perfect and in it's place... I've learned now, that things can always be done tomorrow, and that if something is a mess and someone stops by, it won't make them like me any less (they may think i'm a bit of a slob, but who cares)... Life can be incredibly frusterating with RSD (I have many days where depression sinks me down to the deepest levels) but there are other people who deal with it, so when I'm really down, I think about those people... I know exactly what you mean about finances and medical insurance, most of us here do, so when you need someone to talk with, or someone to vent to, feel free... That's why we are all here, because we understand eachother. Hope that helps too - Jessica

     
    Old 08-22-2004, 05:40 AM   #12
    KateInAustralia
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    Re: Just diagnosed/RSD in foot-HELP

    I agree. My husband is really good with understand what the RSD is like, but sometimes he still gets confused. I'll be ok to do the dishes or something, but ten minutes later I'm hurting again. I may not say anything but if he asks me to do something and I say "I can't because my hand hurts" it confuses him, coz I was ok a minute ago and even said I was ok!

    I have learnt not to procrastinate. If I'm feeling ok and the house is a mess, I'll attempt to clean it. Because I never know when it'll start hurting again and stay that way for days in a row. So I do things when I can, but also accept when I can't and don't stress too much about what people think. It's hard enough having a tidy house with three kids under six, let alone me having RSD!! LOL

    x Kate

     
    Old 08-25-2004, 05:51 PM   #13
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    Re: Just diagnosed/RSD in foot-HELP

    I have had RSD since May 2000' from a fall on a poorly built stairwell at work....I am 52 now,,, and still have not received Social Security Disability....The RSD/CRPS was the icing on the cake had other disabilities prior....I am sorry to know that you have gone through all of this.....Hopfully, I can figure out how the posting message thing here really works....I will be checking in......Linda in Arizona

     
    Old 08-26-2004, 02:58 AM   #14
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    Re: Just diagnosed/RSD in foot-HELP

    Just checking in with update. Thanks Sadened for your support. I can't believe it has been four years and no SSD. Have you been unable to work allthis time? I am also 52, single with two children still at home 18, and 21. They are great, great kids, very helpful and supportive. I am grateful for them.
    I am set up with UW Pain Management with Pain Dr., a neurologist and an ortho all specializing in RSD. Now working on insurance for referral approval as they are out of network. This could take a while. I am anxious....

     
    Old 08-27-2004, 12:31 PM   #15
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    Smile Re: Just diagnosed/RSD in foot-HELP

    I was amazed I could even find you.....Yes, I have not been able to work that was the topper....I also have Bi-Lateral Carpal Tunnel since April of 96...had a right wrist release 97' but it returned not as severe...Cervical Spondylasis-fancy word for a very messed up neck....bursitis due to the stairwell fall in my left hip...Neuropathy both legs and elbows...(Nerve damage) Tendonitis right wrist and left knee...Arthritis neck, feet, hands....Osteoporsis....Fun......Yep, in appeal with SSD again,,,I think the reason it failed this time is my Attorney should of spoke up when the Vocational lady said Hey there is 21,000 Management positions and Supervisory Positions here....I was so in twilight zone....I should have postponed the courtdate but I had waited so long to go before a Judge to begin with...I had just had a breast biopsy and I was just blind sided...
    Anyway, you have youngin's at home....it is good that they are supportive...Forgive me if I don't get around to posting here too much...it's a memory thing....You should look into the MSN groups I am really involved in the RSDBUDDIES Group they are terrific....There are several others for chronic pain I am involved in as well....Anyway, I am in Arizona...Where are you??? Hope this weekend is good for you....Linda in AZ

     
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