Hi
Just me again..

I've been in PT for a while now...it seems like the pain is getting worse when I go to therapy.
Is this normal? Does this happen to anyone else, if so why and should I continue therapy?

I'm desperate as we all are..

Thanks again for helping a newbie

also what medications are any of you on? (I take hydrocodone and use a lidoderm patch)

Hi Summertime,

I have just completed a 3 week intense Physical Therapy program at a childrens hospital in London and it did make my pain worse whilst I did the therapy and for quite a while afterwards but it did help me somewhat. Before I went on the program, I couldn't walk at all and now I am able to walk short distances on my own. I still have the horrible pain, swelling, spasms etc but it makes things easier now that I am able to walk somewhat.

I would definately stick to the therapy - I know at times I just wanted to take the easy option and go home but the PT's wouldn't let me and told me that it was for my own good (even though it didn't seem like it at the time!!).

Almost everyone who has RSD has had some sort of Physical Therapy and for most of them it did make the pain worse in the short term!!

It might be an idea for you to speak to a Psychologist also if you haven't already - they gave me some breathing techniques and coping stratergies to use when the pain got too and they may be useful for you also.

The Physical Therapists on the program I have been on always used to ask me if the exercises hurt and when I replied "YES" in a very tearful voice they would tell me that that was a good sign as it was doing something and I was doing the exercises correctly!!

I would speak to your Physical Therapist and tell them that the PT is making your pain worse and ask them what their advice is.

Sorry that I can't help you that much but if you have any questions, please don't hesitate to ask me!

Pain free hugs
Alison

Hey Summertime,
I had 8 months of PT and was told by the docs that it was to try and keep some strength in those areas of your body so you don't have muscle atrophy. The docs stopped mine and said they weren't doing me any good, but every one is different. I think mine has just gone past the point of being able to help me. I have to go see my doc and medtronic representative tomorrow. For the past 5 days I have been having so much pain in the back of my shoulder. They are going to see if my leads are causing it or if it is something else.The pain is so bad that I can't sit back, bend down, move my arm certain ways, and when I lay down in bed I can only lay on my right side because I have a very hard time breathing when I do all of that. To sit back I have to have a pillow to help prop me so I can breathe. When I stand up the pain isn't as bad but I can still tell it is there. Also when my scs is on at a low amplititude my whole arm feels like it is on fire and it don't matter whether the scs is on or off I still have the shoulder pain. It is mostly the shoulder blade in the back. I guess i will see what happens tomorrow. I am so sorry that you are having so much pain. Maybe you should talk to your doc to see what he says. I hope you get some relief. Your in my prayers.

Sincerely,
Screwballpookie

Hi

I've been in contact with one of my doctors, he wants to try a muscle relaxer.. This all new to me but the pain has going on for a few years and I just assumed it was "normal" after having gone through so many operation.
I have 3 numbing patches on but I still feel the spikes and crawling sensation. There's been mention of a stimulator. I don't know much about those either.
I already have atrophy and I have trouble walking.

screwballpookie

I hope you find relief soon.

ali12
You are a brave young girl to be dealing with so much...you are an inspiration.

Thank you both for your input..

Thanks Summertime!! I'm sorry that you are in so much pain right now and I hope you find relief soon

I really hope the muscle relaxants help you. I have been on a few as I have severe spasms from my hip down my whole leg and I also suffer from Dystonia (a complication of the RSD) and Myoclonus. I have been on Baclofen, Propranolol, Kenadrin and Diazepam so far, they didn't help with the spasms but helped a bit with the cramping pain that I have. I have heard a lot of people though that say that muscle relaxants help them a lot.

I'll be keeping you in my thoughts and if you need anything I am here

Alison

Hi. Last year I went to Cleveland pain clinic it was a day program with pt and groups. Anyhow I could not finish because my pain which is in my inner ankle/foot/calf got so bad. Anyhow they sent me to get a tunneled epidural catheter so I could do pt. I waited and began not in pt but do more on my own. I am now up to 20 min slow walk and can do daily errands. I still have super high pain days so I went back to CC and they still want to do the catheter and have me do pt two times a day. This they said is because I can't do resistance training or lots of range of motions like foot flexes. I fear this because when the catheter would come out will I feel delayed pain like I do now on busy days. I will say there was a time I could barely get out of bed from pain so I do see where the more I do the more I am able but the pain is so great sometimes. I was also going to ask you about the scs cause I was suggested that too. Just fyi and I am not saying this is for you because everyone is different but those pain patches actually increase my pain because it goes on the area and even a light finger touch flares me. Hang in there.

I am not a person who subscribes to the "no pain, no gain" adage. There is a difference between discomfort and PAIN. It think all of us know pain when we feel it. It is the body's way of saying something is wrong.

Of course, RSD screws up the pain signals at times, but still... If it is really hurting (and not just sore and tired) my opinion is to stop. I have had times where I am actually crying from pain. No one will convince me that is doing me good.

Good luck

Mike

I agree with Mike on the "No pain, no gain belief. I believe research said a few years back also that it just isn't the case.

I had 7 different PT'ers in my almost 4 years of PT and 4 of them were dropped real quick by my Dr. because of the therapy they wanted me to do.

These PT'ers need to know enough about RSD that they can help get the pain down, not multiply it. There are many who don't know just as we run into many Drs. that don't know.

The fact is that the pain might get worse and just not calm down. There is no way I would let a PT'er make me do some of the things they think we should be able to do with RSD.

Muscle relaxers are a good thing but you have to make sure if they are working that you don't start to think you are doing better and overdo. Especially with the P. T.

Hope you start feeling better soon.
Ada

The way the PT's on the intense PT program described it was that you need to push through the pain to be able to get better and that sometimes the pain can get really bad before it gets any better. The PT's also said that sometimes people give up on the PT when the pain gets worse (who could blame them?!?!) without giving the PT a chance to work.

My pain levels got worse whilst I was doing the PT and for quite a while afterwards but eventually it settled back down to an 8 on the pain scale. I am still no where near pain free and my pain ranges from a 7 and a half to a 8 and a half on a daily basis depending on what I am doing but I am able to walk short distances now which I was unable to do before I went on the program.

The PT's also said that you are in pain whether you are sat doing nothing or doing something so you may as well be doing something and have pain than not do something and have pain.

As we all know, pain in RSD DOESN'T mean that you are doing any harm (even though it may not feel like it!!) The PT's always used the saying "To Hurt Is NOT To Harm"

The PT's have also taken several video's of how I was unable to walk at all before the program and how I am now able to walk short distances to put into an International Conferance on how to treat RSD and other chronic pain disorders so that proves that it can help - maybe not take the pain away but help people to become more mobile.

Just because the PT hasn't helped you or you haven't given it chance to work, please don't tell others that they shouldn't try PT. Everyone responds differently and no two people are the same as i'm sure you all know

Alison

Thanks everyone for your input it helps me to understand this.
I've been in PT for a while now and I am in agony today. My PT said he doesn't know if this helping or hurting me more, he said we need to see what the doctor has to say at my next visit. He doesn't want to push me if it's causing more discomfort. I have crawling sensation & numbness,burning & sharp shooting pain.
My leg is killing me..I've taken more pain med's this afternoon than I did yesterday.
Mike...I've been in tears so much from the pain also...
daniella mentioned the patches and I am starting to wonder if they are doing more harm than good...I wondered this before I read any replies.

RSD is so tough to understand and treat. After PT my affected area became swollen also, along with swelling in my legs (fluid retention).

Anyone use a TENS unit? I know everyone is different..I am in need of some relief, as we all are.

Thanks again for sharing your experience with me.