Therapy for arthrofibrosis

[Lottiefox]

Funny you mention gardening - when I was told I had RSD after my foot surgery my doctor said "I want you to use that foot like a foot". So, I strapped on some sandals and a thick sock.....gritted my teeth and made my hubby take to the garden centre. I bought tubs, compost, herbs and bedding plants. I spent happy days pottering about planting....clearing out existing pots....replanting....then I tackled overhanging branches of fruit trees with long loppers, mowed the lawn, and jet washed the patio! I understand what you mean about it being therapeutic...I watched everything flower over the following months and remembered how far I was also travelling.

It is a bit of a pattern with RSD AND AF to have good and bad days. Sometimes you just need to rest up for a day then tackle stuff again. I am glad you've found Lenore's AF update. It is important to read about successes. I deliberately don't read horror stories about RSD now! I educate myself but not the horror tales.

You've got the right spirit. Keep smiling (and weeding!)

Lottie x

[silver14]

Thanks Lottie, knew we were kindered spirits from the start LOL, I am trying to regain some normalcy to my life and gardening, and eating the fruits of my labor is one thing I most enjoy, so far just am able to enjoy my lettuce, but peppers, corn and tomatoes are well on their way to harvest! Unfortunately I am not able to use the leg for this, the kneeler I spoke of is like a scooter, but you kneel on it not to bear weight on that leg, but as I said gardening is definitely therapeutic for me! Oh and yes I do try and read the more positive postings it is encouraging to know there is a light at the end of the tunnel.

[silver14]

Well went to see OS for second opinion and am relieved and concerned at the same time.  I am relieved because he has and is treating pts with RSD, concerned because he was very concerned about the situation.  I have to go for some type of bone scan and wants me to see the vascular surgeon right away.  It only took him a moment to see my leg to say it was RSD.  He had no doubt.  I told him what therapy was doing, icing, forcing my leg into full extension and I thought his jaw was going to hit the floor.  He was adamant that I stop therapy for now. We talked about a sympathetic nerve block and the possibility of a sympatheticectomy. He still wants me to go to the pain management doctor. I got the overall feeling of urgency because of the length of time that I have been like this.  I am approaching the five month mark now and for what I have read its now or never to try and get this under control if possible. He told me of a patient he has been treating for 12 years now and that I have a long road ahead of me and then brought in one of his colleagues' to talk to me and see my leg, I guess I was a teaching moment.  I admired his candor in the situation and felt very good with the appointment, at least with the fact that someone recognized what was wrong and took action. Also that he did not sugar coat the dx and what to expect. 

[Lottiefox]

Silver

I have to admit to a few tears in my eyes as I read your words as it is such a hard thing to hear being said to you. BUT I am SO pleased you have an OS with experience of RSD even if he is now sure you have it. In some ways, knowing is better than the maybes. Either way! Thank goodness he has told you to lay off the therapy of doom for a period of time. You have found someone who is honest with you and to me, that is the best possible thing for a surgeon to have. They can have all the chopping skills in the world but if they faff, fib and beat about the bush or don't know what to say then its useless. He is right - this is a long road. But positivity is a big step in it all, and you have that shining through. The block could well be the next move for you.

Good luck. I am so happy you had some definite answers, but am so sorry you too have to deal with this utterly rubbish condition. Life chucks some right googlies at you sometimes. Bring on the home grown peppers...send me some over! 

Keep us posted and feel free to message me if you want any more info, to offload etc!

Lottie xx

[silver14]

Thanks again Lottie, but please no tears. My post, as hard as it may seem to some, was meant to be enlightening and good. I know to some reading this it may sound odd, but I almost feel as if a large weight has been lifted from my shoulders. I am putting my energy into beating or at least getting on top of this, without being unrealistic. Without being too cliche, I've been beaten down and it's time to stand up and fight back. I know the road may not be easy, but my thought is to start with a positive attitude can't hurt. I am sure I wiill, in the future, not have such positive posts. But for now I'll try to live day by day. And those peppers are blooming, I believe I planted, well my son planted for me, green, yellow and orange bell peppers! So get me that address and in a month or so I should be harvesting!

[Lottiefox]

Yay! I kind of meant tears because I think this whole RSD junk is SO danged random! I know what you mean about a weight being lifted. I was diagnosed REALLY fast - my foot surgeon treated me for an infection - 48 hours later I was worse, couldn't bear weight, and when he touched my big toe I nearly went through the ceiling. He said a) fusion failure b) huge bone infection or c) RSD. He KNEW it was c) but X-rayed me anyway.....and I knew too. I work in rehab and i'd read about it/seen it in a couple of folks through work in the past. So I too kind of found a relief in knowing....and decided there and then it wouldn't beat me either. I do have periods of frustration, but I am really active and busy working again and trying to remain positive that one day my body will kick this rubbish out completely. My PM doc calls me a complete success but I am still on Lyrica and still have strange colour/temperature changes in foot....but hey, it could be much worse!

Looking forward to the peppers.    Did your new OS mention AF or does he think the issues you've got are actually due to the aggravation of the RSD?

Lottie x

[silver14]

Lottie, glad to hear your success with this! My OS thought it could be scar tissue,  but even that he felt was due to the RSD. The only real aggravation of the day was dealing with my health plan, they still hadn't approved my referral to vascular. After a bit of yelling and finally getting a supervisor on the line it has been straightened out. And also my best friend had come along with me, she has been dealing with cancer for the past 2 years and I really hadn't gone into the seriousness of RSD or arthrofibrosis with her and she kind of found out yesterday and was a bit upset with me.  I tried to explain that I didn't want to burden her with this along with everything else and proceeded to yell at me and tell me that she wasn't fragile. I know what she was saying, I would not have wanted her to keep anything from me about her condition, though I am usually the one who accompanies her to her drs visits so I know first hand.  Now just have to wait to see how long it takes to get in with vascular, but I do see pain management next Tuesday.

[silver14]

Lottie,

 Just an FYI! Didn't know how to just message you, but ate our first harvest of broccoli tonight!!! It was wonderful, also picked my second round of lettuce.  Peppers are growing saw a few growing quite quickly, think I may be harvesting some very soon too! Our weather here has been very hot and humid, so everything is growing like crazy.  It's been great getting back out to the garden and now being able to enjoy my and my son's hard work!!! This is why I love to garden!

[silver14]

Just a general question, having more pain and swelling, it's weird, the weather has been hot and humid, but now that the humidity has gone down, I am in more pain and the swelling is worse, so I guess it's safe to say it's not the weather.  My question is this, I am on percocet, neurotin and soma, I see PM on Tues. these don't seem to be doing it anymore for pain and muscle spasm, also getting burning pain again, so I would presume neurontin isn't helping.  Just want to go into my appt with a little knowledge, what other meds could help and what should I stay away from??? Any input would help, thanks everyone.

[Lottiefox]

Hey Silver

I LOVE broccoli as well!    Glad the peppers are starting off well......they may not travel too well but I would love to see a pic! To PM me you can click on the bit on my profile that says send this member a PM but you do need to have made 20 posts before you can do so, which I see you've now done so you should be OK!

I find weather does affect my RSD, but I haven't found a pattern apart from the fact it doesn't like really hot weather (good job I am in the UK... ) and also it hates getting very cold in Winter...so maybe extremes for me...humidity can play a part I think but sometimes it is when the pressure changes that triggers something......it is a weird beast.

I found Pregabelin to be the best for the burning pain and muscle spasms. It is a similar family to neurontin but I found a study somewhere that mentioned Pregabelin (Lyrica) was better than neurontin with RSD reaction pain. Cannot recall why but I know my pain doc goes straight for that one. Some docs also like to use it in combination with other things, like an SSRI anti-depressant as that also works on serotonin levels and arguably has a good combo effect with the RSD reaction, mood and nerves...

Most of the opiate based drugs don't do much for RSD apart from knock you out and take the edge off a big flare. Codeine would kill my initial hideous pain for about 2 hours then it felt worse. With the Lyrica I have pretty well controlled pain, although the temperature changes still bother me. However yesterday i did Circuits at the gym including bunny hops, step ups and lots of plank/push up work...not bad on a jiggered RSD foot!

I am so glad you have your friend on hand too, friends are a life support system I think. Good luck tomorrow, keep us posted,

Hugs xxxx

[silver14]

Well just an update, had a busy week, went for my bone scan yesterday, and saw both the PM dr today and my original OS for my hand today.  The pain management dr. started me on all new drugs, I am now taking Lyrica, Zanaflex and he upped my percocet.  We spoke about my upcoming appt with the vascular surgeon and said I was seeing him regarding a sympatheticectomy.  I was surprised by this because I thought the normal sequence of events was to to blocks then consider surgery.  He saw my surprise and agreed he could do the blocks, but wanted me to speak with the vascular surgeon first. Hope I am not reading into this too much, but am getting the feeling that they think I am beyond the point of blocks helping me. Hope I am wrong. I probably won't get the results from the bone scan until I see my OS for my knee on 7/25 unfortunately, though I do see the vascular surgeon on 7/17 so he may have the results. The PM dr is willing to do a block as soon as next week, the day after I see vascular surgeon if he agrees on this. They do this in their surgery suites, I would get a mild anesthesia for this so it's done in their or. A little nervous about this, but would rather try the blocks before surgery.  My OS for my hand must have been feeling a bit guilty because most of my appt wth him was spent talking about my leg, not my hand.  So that's the latest, a little apprehensive about seeing the vascular surgeon and possibly getting the block but got to do anything at this point to get back on my feet, haven't walked in 5 months.

[Lottiefox]

hey Silver

I bet your jaw hit the floor when they started talking about sympathectomy! I would have been in shock too! It will be interesting to see what the results of the bone scan say and what the consult on the 17th brings. I understand that I too would want to try a block prior to going for anything more major, although as I understand it blocks can sometimes have a great result, sometimes not...sometimes you need a series of them...sometimes they don't "hit" the right spot....it all seems very unsure as to their treatment potential and I guess they are clearly concerned about your current situation. I think if that is their game plan, they you obviously want to try as hard as possible to get some control back and start walking. I think you've got a good team in place there, so i have all my fingers crossed that things start moving forwards!

How is the gardening and crop harvesting going?! Still really wet here in the UK - loads of crops are being wrecked by floods and too much rain. Such a shame for some of the farmers who reply on this time of year. We are not very good in the UK are supporting UK farming anyway, this will not be good at all for many of them.    many large supermarkets import loads of produce, and if you want local stuff you need to go off to smaller farm shops and retailers - much nicer and well worth it!

Keep us posted, and hope the new meds at least start to calm down the symptoms.

Lottie x

[silver14]

Hi Lottie,

Well, quite the opposite in the US, most of the states have been suffering from severe drought and extremely high temperatures.  Out west, Colorado, they were also inflicted with wild fires, many people lost there homes, seems we need to change weather patterns for awhile! Here on the east coast, I'm in Connecticut, we are still below normal for rainfall, but not as bad off as the rest of the country.  My garden hasn't yielded any other goodies yet, besides my lettuce and broccoli, but tomatoes and peppers are well on there way, should be picking soon! Were in for another heat wave here, hot and humid weather for the next five days.

As far my leg, I am a bit fearful of the procedures that I will have to undergo, but my feeling is to start with the ones that are a little less invasive, so that is why I was quick to ask about the blocks instead of the sympathectomy, though I will have to rely on their knowledge of what would be best.  I don't want to just go through the motions only to end up with numerous procedures when one would have done the trick.  So I have a lot of questions for the vascular surgeon when I see him on Tuesday, hopefully he is knowlegable concerning CRPS and has treated other patients with this and can correctly evaluate my situation and the necessity of surgery at this point.  I am not sure though, because when I contacted their office for an appointment and I told her my dx, the receptionist had to put me on hold for about 5 minutes and came back and gave me an appointment with the chief of the department. I can either take this as no one knew what to do with me, or he has some experience with this. Guess I will see when I get their. 

Another question though,  my PM dr. put me on lyrica and today I went on line to see what are the side effects, one is swelling of the hands and feet.  Since I have been on the Lyrica, my bad leg is extremely swollen all the way to my calf now and my good foot  has been swelling pretty badly.  I at first put this to that is my time of them month and sometimes I may retain fluids because of this, but that is just about over and my good foot is still extremely swollen.  I am going to give it until Monday and if it does not subside call the PM dr. and talk to him  My question is has anyone ever had this side affect from the Lyrica?

Lottie thanks for all your support hope your doing well and I will keep everyone updated on my progress!!!

[Lottiefox]

Hi Silver

Yep, I have been watching the story of the fires in Colarado, simply heart breaking to see all that destruction of both human property and the scenery/wildlife. Broke my heart. I know the East coast has been really dry - seriously the weather is mad as yet again we have had terrible rain, storms, flooding again. We are very luck in the centre of England as we live on a hill with fields all around so flooding would need to be high to reach us, but it is still terrible for the rest of the country. Ironically everyone was moaning as we had hose pipe bans in earlier this year - not any longer!!

I think you're totally right to keep an open mind on treatments; iI would see the Head of Dept as a positive; hopefully he will have ooodles of experience with the nastiness that is CRPS/RSD. Doesn't help that people call it different names still!

Lyrica - I have not had any swelling with it, but I think you need to monitor that closely as you are doing. I think the other thing is that CRPS can of course cause swelling especially in the hot weather; my toes were like sausages n our one week of heat earlier this year. It does seem strange that it has only got worse since the Lyrica - see how it goes as it might settle down. Do you think its helping with the burning at all?

I am doing good - foot is relatively calm, been training a lot at the gym. Not been able to get out and hike at all as the weather has been so bad. i don't *mind* walking in wet weather with the right gear on but everywhere is so muddy and slippy and to be honest it loses its appeal! Juts off for my Sat morning gym session then hubby and I are off to do some shopping in Cheltenham, which is a nice regency town about 40 mins from us. Some VERY expensive shops but I suspect I will be dragged out of those rapidly - but nice to dream!

have a great weekend, hope the knee behaves itself and you get some fun and relaxation before the next batch of appts.....

Lottie x

[MalDad123]

STOP!!!  Something is definitely wrong!!!  Less is more at this point.  AF is your body's "defensive response" to something gone wrong.  RSD is it's secondary level of defense.  It is now amplifying your pain because it wants you to STOP what you are doing.  Read my post MalDad123.  My daughter went through the same insanity and she's not finished yet (i.e. one more surgery and going on four years)  We've seen the best (Noyes, Shelbourne, Paulos) and Andrews did the original ACL reconstruction.  Believe me, the decision-making you're getting for your care is totally ignorant.  You don't work harder when AF kicks in.  I'm not sure of what happened during the procedure and the post-op therapy, but somewhere in that window is where something went wrong.  You're in a tough situation right now and need to back off for sure.  Right now, you're doing exactly what you shouldn't be doing (i.e. working against your body's wishes).  You body is speaking to you loud and clear!  Back off and see someone who's experienced in AF.  Unfortunately, there's really no clear-cut treatment when it kicks in.  It's typically the result of a technical issue (i.e. during surgery) or too much, too fast on the rehab after surgery.