Physical Therapy and RSD
 

Hi
Just me again..:confused:

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..:icon_sad:

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..:confused: 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..:grouphug:

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

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. :eek:

Good luck

Mike

Hi Summertime,
 

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.:grouphug:

Hi,
 

I used a tens unit for about 3 or 4 years. I had two since I had bilateral TOS. They helped me a lot. Just make sure you don't turn them up to high. Your Dr. will most likely tell you what to set it on but I worked with mine until I got it set to my liking.

I think they work great but some people most likely didn't have the luck I had with them.

Ada

Hi Summertime,

I used a TENS unit before I was diagnosed with RSD and it didn't help me. It was really weird as I had a lot of pain in my leg but I couldn't feel the electrodes anywhere from my knee downwards, not even of the highest setting!!

I hope the TENS unit helps you - i've heard a lot of people who have had some sort of pain relief from them.

Good Luck!!
Alison

Ok this is all I have been told by docs and this and what I have experienced. Again though make sure you follow your treatment program. Anyhow that range of motion,strength training,etc is key to recovery from this. I had went to a day program for pain at Cleveland Clinic and my pain is in my inner ankle/foot/calf. Anyhow I lasted only a few days from my pain being so high and all the activity so that is why they want to do a catheter so I am able to do pt. The last doc said it is like a dog trying to catch its tail. That it is important in the long run to do pt but it hurts so bad that many are unable. Even though I have built up my walking time that is not enough because range of motion etc is key. It is still hard for me to wrap my mind around how that will make the pain go away in the long run. I try to not think of this like a "normal" injury but still it is hard. Good luck.

Tens
 

As you said, everyone responds differently. When I had a tens back in the 80's all that happened was irritation where the electrodes were applied. I am sure that these devices have improved (the 80's was like the dark ages for electronics) since then, but I hesitate to give it a go again.

One of the best things about the TENS is that it can be tried quickly and with no surgical procedure. It is simple to "rent" one, give it a trial and then give it back if you don't like it.

Mike

I have done all kinds of therapy and the most important thing is having a physical therapist who is well educated on RSD and looks at you as an individual patient and does not see everything as black and white. I cannot tolerate contrast baths due to the vasomotor instability of my RSD and any therapist that suggests it is not the therapist for me and I walk out the door immediately. I have found that aquatic therapy is essential and the water has to be 95 degrees or my legs go numb. But I can do exercises in the water that I could never do on land and if I fall, no harm no foul and I do not hurt myself. It has been a lifesaver.

I am still finding physical therapy painful. I went to PT and the burning is increasing. I now have it in the back of my thigh.
I don't know about any of you but this exhaust me to the point I am not just physical tired but emotionally exhausted.
Just thought I'd give you all a little update.
Thanks again for all the support.
Take care everyone.:)

Summertime,

Are you seeing any benefit from the PT? I endured therapy long enough to see if there was any real physical benefit from it, but once I saw that there was not significant improvement I stopped. Your therapist should be able to clearly explain the goals of your treatment plan

It was strange because I enjoyed the treatments and it actually felt good. However, the pain following the treatments would be horrible. I was recovering from lumbar surgery which triggered RSD in my legs and feet.

If therapy is improving your situation, then by all means tough it out; but if you are not being helped then there is no point in going through all of that pain.

Best regards,

EJ :cool:

Hi kejbrew

The only improvement I see is my balance is a little better other than that not much more.

I'll push through it for a little longer and see how it goes. It's frustrating.

Thank you

Hi Summertime, I wrote you last night, but it didn't go thru. I'll try again. Yes, I have a TENS unit and it helped me a lot. It has leads and a patch. You can monitor the frequency and strength of the current. It's like a distraction; The Dr. that diagnosed me ordered it and physical therapy. Insurance paid for it and the replacement patches. I had already had rsd for maybe 4 years but didn't know it and had lots of p.t. for frozen shoulder after breast surgery. Then had hand injury during water skiing. RSD used to be called shoulder hand syndrom. Anyway, I had a lot of therapy on hand and got half of the range of motion back to my fingers and they desensitized my hand so I could bear things touching it. My fingers bend about 1/2 way now. but can cut my own food etc.
Therapy is very painful, but the only way I got use of both arms (frozen shoulder) and use of hand. Was losing my toes, ( I have full body RSD) they were turning upward off the flood. Dr. gave me exercises to do in the swimming pool, and now they touch the floor. I try to stretch and do something everyday. I can't remember, Summertime, but do you have frozen shoulder? I remember how much torture it was, tears falling down my face, while strapped on a table. I took pain meds before treatment and I also had an hour of massage therapy that I paid for. After about 50 treatments, they introduced me to a orthopedic surgeon who wanted to break my shoulder. I said no thank you. Everyone knows surgery is the worst thing you can do for an rsd patient unless absolutely necessary. I called my insurance company and told them about my introduction to surgeon, and asked them did they want me to go that route or pay for my massage therapy sessions, that I had before the p.t.? They said OH we would be happy to pay for the massage therapy. So I feel , for me, that was the best way to go, massage and p.t. After a few more months, we moved out of state. They therapist told me it might move over to the other shoulder and it did. In RSD language that is called mirror spread. I found a great therapist, who had just opened a new office. He was the PGA physical therapist who traveled on the pro golf circuit. He was great and the therapy was not very long compared to the first shoulder. I still use a cylinder styrofoam and lay on it and roll rom side to side. I do other exercises to keep my shoulders loose and straight.
I do agree about too much pain is not good, but I don't think there is a way out of a part of our body locking up from RSD to loosen up without considerable pain. Swimming has been my best helper, but when I was so bad, I couldn't even do that.
I hope the best for you. What part of the country do you live in? Everyone on here is a kind and compassionate person who understands what you are going thru.
I had the electric shocks and shooting pains, spasms and knife like pain, They only stopped when I went on anti-seizure med after I was correctly diagnosed. Take care, Loretta

Hi Loretta

You've been through a lot also. I posted on the spinal forum about SCS. This is the next step. I'm scared though.
I know there's no easy answer and everyone is different in treatment, what works for them might not work another,etc..
I am already having a bad day as I feel my thigh is on fire. This stinks, there's no other way to put, well there is but I don't want to kicked off the site..LOL

I have seen the emotional toll this has put on my family. That bothers me a lot also. I'm very fortunate to have a wonderful husband and caring kids. They help me a lot but I also do as much as I can to keep active until I can not go anymore. About mid day I'm taking a nap because I hurt so much.

Thanks for sharing and being here for me and everyone else. This site is a blessing. I felt so alone and lost,this may sound really dumb but knowing others are going through this helps to know I'm not alone...does that make sense..:confused:

:grouphug::grouphug: to everyone..:)

Thank you for updating us, Summertime. I totally understand what you mean about being both physically and emotionally exhausted after Physical Therapy. I have PT sessions once a week at my childrens hospital and when I come out of PT, I always seem to be in a mood and it takes a while for me to come round. If someone says something to me when I am in a lot of pain, even though they might be trying to help, I always think that they are saying something wrong.
If you feel that the PT isn't helping you, I would speak to your doctor and see what he/she suggests to do. My PTs told me that it can take a while for PT to start helping but that even though you might feel like it isn't helping, it could be at least keeping you where you are now and stopping things from getting any worse than they already are.
Take care and keep us updated when you can.

Hi Summertime,
Yes, it makes sense, I believe it's not entirely possible for someone to truly understand what RSD is like unless they have it. My daughter, age 29, understands the closest. She is a court reporter and has done depositions on RSD patients and she has done a lot of research too. She and her husband moved to Chicago a year ago, but now she comes back every 2-3 weeks and works here. Her husband became a commercial pilot, so it is so wonderful they can come back so often. She left yesterday. My husband trys to understand, and is very helpful, but our life has changed so much, it's just not possible for it to be the same. You are not alone, even though we all might react differently, we are all the same in so many different ways.
I've been sleeping a lot lately, also. I'll see my Dr. next week, and I'll ask him about the SCS. I respect him greatly. I have skin lesions that bother me as to looks. When I asked him about having them removed, the moles, he said he wouldn't be able to touch them, because of his insurance. His insurance does not allow procedures on RSD patients. i remember, my daughters malpractice case, was because the Dr. didn't inform the patient about the possibility of getting RSD from the surgery procedure.
Summertime, it's late and I'll write you later after I see my Dr. He is a neurologist, pychiatrist, pharmacologist from new york. I'll see him Monday. I hope you rest well. I know you understand about the memory problem, but, did I tell you I have full body RSD? How did your's start? and where do you have it? I'm sorry, I forget. Take care, Loretta

Re: Pt
 

Hi,
I for one just could not tollerate PT at all. I am so hypersensitive as well as swell from both hot and cold that Ive had oh probably 4 therapists after like 3 visits basically say, "you are just to sensitive we cant even touch you. Its a waste of both your time as well as ours" so basically, dont come back. Frustrating but, to me sure PT is gonna be a bit uncomfortable but when it is so bad that all you can do is cry and beg to stop there is no reason to go.

Blessed Be
Deb
RSD is not whom we are what we have to be is fighters and survivors.

Hi everyone,
Therapy is very difficult and probably impossible for some. My first frozen shoulder was so bad, I took pain med before hand and also paid myself for massage therapy to soften up the tissue. I was strapped down and tears rolled down my face. I didn't feel I was getting worse by it, or would have stopped. Would have permanent frozen shoulder with no range. The second shoulder was much easier and faster. Then the third time with therapy was for frozen hand. and desensitize the touch. That was tolerable, but too late to get full range back. four fingers can move just partially, but enough to cut my own food and have some use of it.
I just want to say, that the anti-anxiety med lorazepam works well for me for less pain 2 mg. 3 times a day. take less vicodin and flares are less due to stress etc. CoffeeBean said I was only one she had heard take it for this. My Dr. is conservative, but he also feels that type of med has a place with me anyway. take care, Loretta