Physical Therapy kicking my A$$... what to do with the pain??

Hey everyone!

So I've been doing PT twice a week for 3 weeks now.
It's all starting to catch up with me and the Tylenol & Ibu is not cutting it. I'm a stay at home mom, I have 2 girls to raise and as many of you know, that's a very hard task when it hurts to move.
I would really appreciate any advice on coping & methods of dealing with the pain.
I refrain from taking any narcotic pain medication cause it's hard on my stomach and makes me feel icky... but the last few days I been thinking it may be worth it to have just a few hours without pain.

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Hi Niven,

Ok, you have two different problems going on.

1) If you are in pain and having to recover from PT, you need to find a new PT ASAP! Traditional or Rehabilative physical therapy causes us damage/harm. Physical Therapy for EDS should not have weights or resistance bands. My therapist says if anything hurts, stop what I am doing immediately and do not repeat that exercise. Most of the exercises are isometric...most of mine I am supposed to do on my back on my bed. There should not be any "no pain, no gain" and there should not be any "push through the pain". If you are doing the same thing as everyone else that comes into the practice is doing, you can be sure they have no idea what they are doing. It is imperative the therapist you are seeing is experienced with connective tissue disorders and/or hypermobility because it really is about the opposite of "typical" pt.

2) Pain that exceeds low levels must be managed by whatever mean is necessary. Untreated pain for periods of time increases blood pressure and actually alters brain function. Additionally it disturbs sleep and lowers immune system. Quality of life decreases and depression can develop. There is nothing good that comes living in high levels of pain. There are many pian relief options and I suggest you fill your arsenal with as many as possible. Many EDSers find that narcotics do have a place in that arsenal. Once on them for a set time, the side effects diminish and people are able to function without the loopiness when taken in low doses. But that decision is up to you and your pain management specialist.

Good luck...and I really hope that if you are with a pt that is really kicking your a$$, you drop that PT like a bad habit before you are further injured and start finding one that can actually help you!

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Ditto to what SlapaSmileOn said!
Additionally, the PT I use, though they don't really 'get it', does a few specific things for me:
- I use the warm water pool for ALL my PT (stretches too) - the pool is around 80 degrees (70 seems cold to me)
- before I get in the pool they put me in a warm water massaging bed that helps relax my knotted muscles so that I can actually use them (typically they use this for people at the end of sessions - if the PT you use even has one!)
- they have noted what causes me pain & they adjust accordingly!

Don't let a PT push you around! They may think they know all, but that is NOT true.
Have you gotten any good info from the CA EDS group?
As a mother of two I SOOOO UNDERSTAND!
Feel free to friend me if you want to chat.

Gentle Hugs,
Christi

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Thank you lady's!!

He is nice enough, and not pushy but I am realizing he just does not understand. Today when I went in I told him I was hurting and he suggested we only work my legs and refrain from using the resistance bands... I am now laying in bed really wishing I had taken it easy!
I have a apt with my doc tomorrow so I am gonna talk to her about finding someone who knows more about EDS for PT.

Christi, I can't seem to find CA EDS group?? do I search for it under CA EDS??

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I've gone through PT twice, once before my diagnosis and now after. The first time I was going because they thought it would help with my "fibromyalgia" pain. PLZZZZZ I told them it wasn't fibro, but I was sure going to do whatever it took to feel better. I was in pain EVERYTIME I left PT. The guy commented on my flexabilty but never figured out that my flexabilty might be causing the problem. Fast forward to my current PT (I love her). She has never had a patient w/ EDS but she is very knowledgeable (sp?) of NORMAL range of motion. I've been going 3 times a week for 6 weeks and I'm telling you it has changed my life. At first I never felt like we were accomplishing anything because I wasn't hurting when I left therapy. It's a slow process but now my bad knee and ankles have stopped swelling because I've actually developed muscles (that I never knew I had) to hold my joints in the correct place. My neck and shoulders are still a problem, but she actually spends time thinking about new ways to excersise them and if it doesn't work then she stops me and we try something else. ANYWAY my point was a GOOD PT makes all the difference in the world. They can either help....or hurt.... and if your hurting then you need a new PT.

Hugs
Amanda

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Oh and about the pain meds, there are times when I don't really have a choice. I have to take the pain meds. It's like what Slapasmile said. When I've gone to long suffering I get a little depressed and a lot angry. I'm not one to complain so I really never talk about the pain with anyone (except on here) but I will notice that I become cranky with the kids, or my husband will start driving me batshit crazy and it's not their fault it's mine for pushing myself to hard. I've made peace with the pain pills, I am a better person when I dont feel like I was run over by a train and then forced to get up and make dinner. lol

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As a nurse and a patient who has looked up all the research on fibromyalgia, IT IS a disease of the central nervous system and the problem is in our brain chemistry and such. THEY CANNOT REHAB US WITH PT! That is rediculous. WE DO NOT have a condition which has to do with the muscles neccessarily, we have a chronic pain condition in which the brain interprets pain from the wrong sources. PT does not HELP FIBRO.... Can I scream that???? Will they listen??? NO. Becuase they are treating you as you have had a stroke or some accident that can be fixed with PT. This illness is not fixed with PT. And furthermore it makes you hurt worse. WHEN IN THE HELL will these medical people get off their asses and read the truth about what fibro is?
I am sorry you are going through hell with some dumbA$$es that don't have a clue.
Sorry for the french to, but it makes me angry they are doing this to you.
Debra

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Hi Debra,

The PT is for the Ehlers-Danlos Syndrome...if the physical therapy is done correctly (it's not being done correctly in Niven's current sessions), then it is very helpful to increase joint stability and decrease subluxations and dislocations. The joint instability causes pain as well as the micro tears in the connective tissue. It is my understanding that Fibromyalgia is a diagnosis requiring exclusion of other causes. This is why many EDSers have been diagnosed with Fibro before discovering they have EDS, but don't get diagnosed with Fibro after their EDS diagnosis (except by some very controversial diagnosticians). I agree that folks with Fibro do not have great success with pt alleviating their fibro symptoms, but EDSers do require effective pt.

Take care...

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Sorry for the misunderstanding. But you need something for pain then. Because all the while the PT will make you hurt worse at least for a while I assume. They need to give you some pain medication.
Debra

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Yep, EDSers do a ton of pain management including the meds...just had to order new pads for my TENS unit this morning in fact. However, that is the red flag in Niven's post...the extreme pain. The PT for EDSers should not be painful. If anything even begins to be painful, the exercise is supposed to stop immediately. It's a slow process, but should not cause pain (though there can be some muscle fatigue if you are working muscles that have not been activated in a while, but that is very different than joint pain due to EDS).

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Find someone else and strongly explain EDS and that you must GO EASY! Good luck.

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Sorry, I did not realize that I posted this in both forums.

I saw my doc today and she prescribed me some lidoderm patches and Meloxicam... and told me that she referred me to a specific therapist in that office and is not sure why they set me up with the guy I am actually seeing so she asked me to please call and change PT's! So, NEXT! lol
And here's to hoping the medications work!

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Good luck, Niven. Sometimes the first thought is to quit! Glad you are giving it another go. My thought is that a really on the ball PT can help us with all of our pain conditions. Dont get me wrong, the wrong ones can do worlds of damage! Educate your PT on your illness. I have fibro and took a whole book in for mine to read. I knew i had the right guy because he read it! We both know I wont be cured but it helps with the stiffness and gives me a great sense of pride when I am done. Also, I have found the more pool work the better. Good luck! Vickie

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