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Posted

Okay, I have a reason to have a sore back. I've been a passenger in 2 bad car crashes, the last one also necessitating 2 hip surgeries. I've been to over 100 physical therapy visits for hip and back issues in the last 2 years.

On days when I have more energy, I can do more. Yesterday evening, I had on my leg and abdominal compression and my cooling vest and walked with my hubby the mile to my parents (where I laid on the floor panting and drinking) then we walked the mile back. My back feels great today!

I have a list of PT exercises for my back and hip a mile long, its just that I never have the energy to complete them all.

Since I'm needing more maintenance work from now on, my recent physical therapist suggested a masseuse who does myofacial work. I'll probably see him in the next month.

I have documented arthritis in my spine, along with some nerve compression. I'm only 35 and wish I could get stronger but I just don't have the energy most days.

How do you guys who already have back pain issues cope with being so immobile?

Posted

Hi Thankful,

Sorry about your back pain. I know how hard that is to deal with. (like you don't already have enough!) But I am so glad you wrote about this. I have pain all over, but the back and the chest are two of my worse places. And I have noticed that when I am "bad" POTS wise and more inactive that the pain becomes severe. I have found some stretching in my bed does seem to help with this a lot. I looked up some breathing exercises last night to try and "stretch" my chest muscles, in hopes that will help me breath better. How did you end up feeling POTS wise after the walk?? I am glad you got out and got to do that. Did the cooling vest help?

I am 37. But gosh I feel 80 some days!

I hope you are able to keep up with the walking if it helped you, but be careful not to overdo. (gosh I am good at giving advice I don't take myself.) There are a lot of yoga stretching videos on you tube, that stretch the back, that you can do right from your bed. But with your history of car accidents I would make sure it was ok first.

Hugs

Suzy

Posted

I have never been so inactive in my live. I'm 37 and have been trying to gradually get back in shape by walking in the neighborhood with my 2 youngest kids in the stroller. That was helping until about 1 month ago I blacked out during a walk. It scared my kids and me and my stroller was broken by the emt's trying to fold it up so now I'm back to just staying home. My back actually went out about 2 weeks ago and that's the last thing I needed right now. I know I really need to get back in shape and that will help prevent these types of injuries. I barely have enough energy to keep up with my life and now I have one more thing to work on before I can try walking again. I've also had bulged discs in the past. My next task is to find out if my insurance covers chiro visits since that has helped me. I also have some back stretches I can do while laying down or sitting and watching T.V. and those have helped some. Good luck to you. I hope you can find something to get you back to feeling a little better!

Brye

Posted

I have similar problems with recurrent back pain. When my POTS and EDS are behaving themselves and I can get out and about / gentle swim / walking / Tai Chi class my back seems to be okay and doesn't cause too much bother.

However if due to POTS or pains in my knees I am unable to "keep moving" then my back will flare up badly. Sitting in the car or driving for too long also causes back, shoulder and neck trouble.

When I am having a bad time with my spine it can take quite a bit to sort it out. I see a personal trainer who is qualified in sports massage. A few weeks ago I had really bad upper back pain (couldn't sit down as too painful, had to lie or stand up) and needed him to massage me 3 times in one week but the repeated treatment worked and the pain settled. I try to get a massage at least once a month even when my back is behaving otherwise it does tend to stiffen up and cause pain.

Once you have got your back moving without too much pain try doing some gentle exercise (such as Tai Chi which has gentle curling / uncurling "spine wave" and rotation movements of the spine) to maintain the movement.

Flop

Posted

Hi,

Several bad days of being barely able to move or stand up aggravates my already severe myofascial pain as well. I don't have many good suggestions, but have you tried gentle movements while laying down or stretching while laying down? Simple movements like flexing your legs, rolling your ankles, bending your arms, etc. might help some.

~ Broken_Shell :blink:

Posted

Hi Suzy,

As you know, what kind of day my body's having determines whether I can walk or not. Also, temperature plays a huge factor. It was under 70 degrees while I was walking. It took me 1 and 1/2 hours to walk that far, which is pretty slow! I still get warm from the activity, but the cooling vest keeps it bearable while I'm walking. After I'm walking, then I really pool in my legs but last night I spritzed my compression hose with cool water and the hose are very thick so they stayed damp quite awhile and kept my legs from pooling so much. I actually feel pretty good the next morning, as long as I've stayed extra hydrated. And my back feels better from the movement.

Generally, I can walk about 1/2 a mile a day for exercise (and it takes me about 1/2 an hour).

I have lots of stretches I'm supposed to do daily, but on my worst days I can't even tolerate stretching. I try to do them on my good days, for 1-2 minutes at a time, throughout the day. My muscles get so stiff so quickly it seems. I totally agree with feeling 80, as I'm just 2 years younger than you!

Thanks for your support. It's always good to hear from you!

Hugs, Janie

Posted

Hi Brye, I hope you can get some relief for your back. I understand your hesitation to stay at home. I've never fainted (thank you, God!) but I try to wait til my husband can walk with me in case I'm too dizzy or tired to make it home. I hope you can get the insurance you need!

Flop and Broken Shell, you hit it right on the money with gentle movement. I've been to chiropractic many times, and can only really tolerate the gentlest of adjustments. Otherwise it seems I have more adrenaline and back pain for several days following. Then I'm stuck again. GENTLE STRETCHING is the best it seems my POTS and back can handle right now.

It's hard to resign myself to a life of pain. It's hard to tell most days whether much of my upper back pain is from past injury and arthritis or lack of bloodflow from POTS. It doesn't matter, I guess, except on the days when my POTS is better I definitely have less upper back pain.

My neck is so stiff all the time. It's been like that since the first car accident over 10 years ago, but gotten worse with POTS. I sometimes use a heating pad on it which takes the edge off.

I don't know how you EDSers do it. I don't have EDS (I'm stiff as a board) and so sore!

Posted

The EDS bit is strange. Yes I am flexible and can put my hands flat on the floor with my knees locked most of the time, but when my back is bad it feels so stiff. Every wriggle feelis like it is pulling on tight muscles. I sometimes wonder if I over-stretch muscles accidentally then they sort of seize up afterwards?

I know I have to sleep well supported. I lie on one side and have a big "body pillow" that my upper leg and arm rest on to avoid twisting my back. The bad patch I had a month ago was after spending the night away from home and not having a spare pillow to put under my top knee. Once I have seized up all I want to do is lie still in bed, even though I know it is the worst thing for a bad back.

I like sitting in a jacuzzi / whirlpool but usually find the water is too warm for me. I've been thinking about trying to get a jacuzzi insert for my bath so that i can have tepid water but still have the jets massage my back. Has anyone tried any of the home things (not an actual bath, one of the mats that you put in the bath)? I wonder if the pressure would be too low to have the massaging effect?

Flop

Posted

Thanks Pat, I also got quite a bit of relief for my neck pain from accupuncture. But it doesn't seem to help with pain in my head or mid and low back. You're right, though, accupuncture certainly has its benefits.

Posted

A very good bed has helped me a lot. I also use a pillow when I am on my side. Sometimes to prop myself up with, other times to support my knees and hips.

The right kind of sofa or recliner is very helpful, too. Some sofas really hurt my back when I lie down on them. The right sofa or recliner definitly keeps some of the pain away.

Rachel

Posted

Hi Rachel and Rama,

You're so right about being aware of how I'm sitting or lying. We purchased a good mattress a couple years ago and it's been worth every penny since I spend more time in it than the average girl! :rolleyes: I always use a pillow between my knees at night, but I can't seem to find a good pillow for my neck. I've tried feather, poly, memory foam... And you're right, Rama, advil is my friend (until my tummy starts burning anyway).

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