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Physical Therapy is killing me!


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I know this is off topic but I just need to vent and talk to someone.  I am going to PT for my chronic neck pain, starting week 8 now, and it is just KILLING me.  I am in much more pain than I was before.  I have done this before and I told the pain dr. it did not help, but of course he did not believe me.  He was pressuring me to get PT or injections, and my husband asked me to try it again, so I did.  We are now at the, "gee, I don't understand why this is not helping you," phase.  We always get to this phase.  I went Fri. morning and had massage, heat, e-stim, etc. and did about 12 gentle neck stretches as the therapist told me.  I have been in extreme pain, spasms, since then.  I have weaned myself off of pain meds because they were making me a crazy person, and were making me itch, which, again, the dr. did not believe me.  If I go back, and they drug test me, and find no drugs in my system, they will assume that I am selling them!  I do NOT plan on going back.  The "war on drugs," has made it very hard for people with legitimate pain to get the meds they need.   I have had 2 neck fusions, and something is just wrong in there!  They say I have a "forward head."  I have had multiple opinions, but they are different every time.  I have had MRI's and x-rays for years.  I have been misdiagnosed with fibromyalgia, and given epidural injections which were not worth it.  I have been put on multiple meds, most of them made me sick.  I have even ended up in the ER from their drug cocktail, and the dr. told me I was committing a felony, trying to get drugs from another place.  Then they wanted to put me on another cocktail, and I refused.   I have had a terrible myelogram which was botched and not completed, and now if I am just told about injections, I cry.  I just can't take anymore.  My pain dr. quit so I had to find a new one.  I told the new dr. that I had had injections in the past and I did not want them anymore and he told me that I was a "fail" and had closed myself off to further treatments.  I cried all the way home, and then had my first ever panic attack.   They treat you like a drug addict the whole time you go there, and don't even get your appointment right.  It is not that easy to just change doctors, cause then you are a, "dr. shopper."  I now feel that western medicine is barbaric.  I feel like I am in the Inquisition!!   No more narcotics for me!!

 

  Needless to say, I can't sew or quilt at all.  I have been sitting here for weeks just watching movies and reading the forums.  I cannot do anything, not even my housework.  I have been trying to knit, do hand embroidery, something to keep busy, but even that is too painful most of the time now.   My kids could not come over today for Easter because I just could not sit here and be pleasant for the grandkids.  I just do not know where to turn anymore.  Feeling rather hopeless I guess, which I am sure does not help.  I know that some of you suffer neck and back pain.  What has helped you?   Do you just learn to live with it?   People say, "be positive," but it is wearing me down!  This has been going on, on and off, for 23 years, but it is constant now.  I hope I do not have to sell my Tiara.  I haven't even paid it off yet!   lol

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Peggy, I was injured at work about 14 years ago and have gone through much of what you have.  I couldn't take the narcotics without being sick (vomiting) all the time so I wouldn't take them.  I was labeled "non-compliant".  I couldn't tolerate the physical therapy because it kept me in a constant state of inflammation and pain.  I took Motrin 800mg and the doctors complained about ordering them for me.  They are not a narcotic therefore couldn't possibly be helping me they said, and they were bad for my stomach.  My life was so out of control and I felt so helpless.  I had the panic attacks the crying jags.  Finally I decided I had to get by as best as possible.  I have really good days and I have really bad days, but I get by.  On my good days I try to accomplish as much as possible.  On my bad days I put a quilt over me and sit in my recliner and watch tv.  No apologies anymore.  Massages help considerably, but are expensive to get on a regular basis.  I have a hot tub...it helps.  Try to find little things that make it better and try to do those as much as possible.  I saw this quote one time and it made me realize I had to learn to deal with all this.  I no longer let doctor's label me with "chronic pain".  For some reason this has made me feel better.  Now if I could just get them to stop labeling me "obese"...lol.

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Peggy, I had 3 cervical disk fused about 15 years ago. It worked like a charm. About 6 months ago, the pain came back in a different way. The MRI said the disk above the 3 fused disk is collapsing. The pain does not affect my arm like yours (15 years ago it did). This is a pressing pain like someone is choking me from the back of the neck. I don't know how to describe it but it keeps me in the bed about 2 days a week. One of the meds, a nose spray, cost $2800 a month so I only use samples. The other med makes me levitate about 2 feet off the ground. I have had head/neck shots twice and go Tuesday to get my third round. It is like huge bumble bees stinging me all over the head, neck, and shoulders. It is worth every sting. After Tuesday I am going to ask my sweet Neuro Dr (a lady) to refer me to someone who does the laser treatments. I can't go on this way. I WILL NOT go to PT as exercise hurts like the dickens. So, I feel your pain. BTW, we have one of the leading migraine specialists in the USA here in H'Burg. Folks come from all round the world to see him, Dr. Kevin Cole. I don't have migraine so he is not going to be able to help me. I will put you on my prayer list as I feel your pain. Blessings.

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So some of you ARE just living with it!  I have gotten on some pain forums and I see that I am not the only one being treated this way, and that I am not the only  one who is hurting, and the doctors can't help.  Thank you for taking the time to talk to and encourage me.  When I go to PT on Tues. I am going to talk to them all about this again, and NOT do any exercises.  No massage this time either.  It hurts too much!!  BTW, my arms don't hurt, it just hurts my neck and shoulders to hold them up, and it hurts my neck to look slightly down at whatever I am working on.

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I have heard of laser pain therapy, and it has helped some. They don't like it when you tell them the meds make you I'll or you can't function on them so when you take control and refuse them you are non compliant. Don't accept the prescriptions. Find a different doctor in another area until you find one that will listen. I have nerve damage in an ear and there are days I cannot function. At least if I drank I could understand the house moving. I finally found a doctor and believe it or not an imported drug that has to be compounded from Switzerland. A local pharmacy by his office gets it in for him. He is an older military doctor. I don't know what I will do if he ever retires. When I go to the doctor you tell them what meds your on and I get told that med is not in any of the books so I have it wrong. Hmm, been on it for 9 years now, our medical plan won't cover it since I can't get it mail order and I don't care. I pay full price for it. You have to be your own advocate. If they call you a doctor shopper tell them yes, I'm not after narcotics I want help. Hang in there. My daughter has an unknown chronic condition and the pain clinic is able to help her, but that was after unnecessary surgery and multiple doctors. What works for one doesn't work for another. If their theory doesn't work your a non compliant patient. Well why take the crap if it makes you up functional or ill and does nothing for what you went in for.

Sorry for my rant, but I understand. Some pain you can learn to live with some you can't.

Shirley

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Peggy,

I feel for you. Pain that wakes you up at night and limits productivity during the day is discouraging.

I struggled with intense pain in my lower back for nearly three years. Two herniated discs and a ruptured disc. After frustration with two neurosurgeons who thought surgery might help, I went to a pain clinic and told the doctor I wanted no meds, no surgery, just wanted it fixed. The doctor mentioned a specific physical therapist, with sports medicine training. We were a good match. My life is manageable now and I'm not on meds. There are a few activities that will set me back for a week and I think I've learned what they are and don't do them. Bike riding is one of those activities that I had to give up, but if can walk 8 miles a day on gentle slopes with no problems. I can paddleboard but not kayak. For me it's jarring or bedding forward too much that causes the nerve/disc problems. I'm back working in my garden, just close to where I'm kneeling, no stretching for that weed three feet out. It feels so good to be doing things I enjoy this summer.

Please do not give up. If one physical therapist isn't a good match, try another. Take your vitamins, including extra Vitamin D3 and treat yourself to a massage when you can. It's hard to relax when things hurt, but tension seems to exasperate back problems. I'm going to be praying for you that you find and feel lasting relief.

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Thank you.  I did try acupuncture, but lying face down on the table was torture.  They dimmed the lights and left the room.  I was left there, and after a while, started calling for help.  lol   No one could hear me!   I am not sure if I should go back and try again because my insurance does not cover it.  Has it helped you, or anyone you know?  I just felt a warm sensation, as if perhaps the blood flow was heavier in that area.  I think I have tried everything but a Mongolian shaman.

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Heidi, I am a bit confused by your comment because the pain docs I have been to do nothing but meds, injections, and PT.   They have no way to fix it.  They are the last resort when there is no fix, just attempted pain relief.  Anyway, that has been my understanding.  They have never offered me a way to fix anything.  One did send me to a surgeon, who sent me for the myelogram, that was botched.  I will NEVER do that again.  It was horrible and left me hysterical and afraid of needles in my neck and back.  When I tell the pain doc this, he just thinks I am crazy.  My back hurt for WEEKS after that.  They have to pull fluid out of your spinal column and then put a dye in.  They could not get any out of mine and dug around for what I think was about 20 minutes.  Worse than natural childbirth.  lol

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Would love to know what helps you. I have a herniated disc with arthritis. I am in chronic pain. PT was torture and so I stopped it, I hated throwing up and being in more pain afterward than before I went in. I am now looking into shots, before surgery. I had surgery 9 years ago for a herniated disc in my neck and it was such a relief to wake up from surgery and be pain free. I was good for 8 years, now it is back and just want to be pain free again. So I will give the shots a go and than look to surgery again. No pain meds for me, I have a life to live :P

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I should not here that I can not take "pain meds!" I am allergic to all opiates (and we know they are the best). As a matter of fact, they are down to around zero they can give me even in the hospital for pain relief like after surgery. (I am really looking forward to my 80s!!) Perhaps by then they will have fixed the nerve endings that are inflamed by good pain meds. Of course, by then, my insurance won't cover them! In that case I hope Jesus just sends his Angels. PS: When a Dr. says you are non-compliant that is just another way of saying he/she can't think of any way to make you better and it is your own fault!

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Have you tried any adjustments to your diet? Wheat can be one of the biggest aggravations to your system.Wheat is in almost every food that comes in a box. See wheat belly blog.com for more info.

When I eat wheat the bottom of my feet hurt and are very stiff in the morning. Then I take it out of my diet and the pain goes away. The Dr always said my feet hurt because. I was carrying around extra weight. Not true.

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For the past year and half, I've been the sole caregiver for my Mother. She is still unable to even turn over in bed by herself and this 24 hr work day has done a number on my lower back. At times, it feels as if someone is standing on my lower spine, the pressure is so intense. I have even started to have pain down one or both legs at the same time, and start to fall because one leg gives way. I cannot even go to see a dr because there is not anyone to stay with Mom. Hospice was caring for her for almost 10 months, but now, she is not in danger of dying, so they left. Doesn't matter, as we never had a volunteer to sit with her so I could see a dr anyway. Painkillers are out of the question, I need to be alert.For months, I was taking motrin, OTC pain patches and using cold packs to my back. Finally, being desperate, I took some of her prednisone. This I know, is very dangerous to do, but I was at the end of my rope. I took 10 mg a day for 4 days, and at the end of the first day, I could stand and walk without pain. By the end of 4 days, my pain was minimal.  It is not gone, nothing is fixed, and it still comes back after about a couple of weeks. I do believe that I would have had to place Mom in a home if I hadn't taken the prednisone. It is not something I want to do on a regular basis. It weakens bones, and does a number on the adrenal glands.

I know that if you ask a dr about trying prednisone, they are going to tell you that the "shot" is a steroid, directly into the pain area and is better, but sometimes it's not.

I certainly don't intend to just take prednisone for pain control. If I need it again, I know that it works. Once school is out this year for the summer, I have someone to stay with Mom so I can see the dr, I just have to make it till then. 

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Peggy, sorry for the length of this post!

This is what I understand from my physical therapist: After my accident that ruptured the disc in my lower back, and herniated the ones above and below it, it was repeatedly injured it while caring for my parents. ( I cared for them full-time, 24/7, for 10 years, until my my last parent died last October.) Scar tissue and adhesions formed as a way to protect the area. The web of fibrous tissue restricted movement, blood flow and communications between the muscles and the brain, causing the muscles to shorten. Eventually my lower back would not bend, and that put stress on the area above and below the initial injury. The slightest thing seemed to re-injure the area.

Some sports medicine physical therapists are trained in Astym and Graston techniques. What these techniques do is to break down the scar tissue, making you more mobile. It also stimulates the growth of healthy tissue. As they break down the scar tissue, you do exercises to the previously immobilized area to train the muscles to function as they were intended to function. Initially it was very painful, but I stuck with it and in two weeks I was off pain medication and sleeping at night. I continued the therapy for two months, at which time I felt I was wasting the therapist's time, because I felt so much better. My therapist was a tri-athelete, who had ruptured a disc in competition. It takes me a good hour a day to do the exercises, which I will do for the rest of my life as I can see myself continue to improve when I do them and have pin return if I skip them for a few weeks. Maybe someday the supporting muscles will get strong enough for me to run, as I did before taking care of Mom and Dad, but right now I'm thrilled to walk distances and not have the excruciating pain in my back and the numbness and pain down my legs and feet. I'm in my 60's and I'm grateful I can do so much more than I could 3 years ago, following the injury.

I didn't realize, until a few months after Dad died, just how much stress I was dealing with. There is a cost to caring for one's parents 24/7, that many who have not done it will not understand. It's not just the physical and emotional stress of managing and providing their care, but also the loss of personally relationships, with family and friends's that there is "no time for." Right now I'm preparing my parent's home for a sale. On some days it's tiring, but I'm looking forward to getting reacquainted with my husband and grandkids and building new friendships, including one with Millie, my APQS quilting machine.

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Debbie, I wish I would have known some of the techniques before hurting myself. There are techniques and equipment to help move immobile parents. Both of my parents were in wheelchairs and both died sitting in their favorite chair in the front room. A Hoyer lift is great for getting them in and out of bed and a Sit-to-Stand lift, with the transfer sling, is great for transfers while in a sitting position from wheelchair to toilet to recliner. Dad's last year we used a "low air loss" mattress, that I wish I would have bought sooner. It was great for his skin, so no bed sores, but also great for rolling when changing or placing the Hoyer sling under him. When inflated fully the mattress was very firm and he could be moved up in bed or rolled rather easily. When he was sleeping it gently inflated and deflated so there were no pressure points. The mattress and sit-to-stand lifts are in great condition and for sale if anyone needs them. I couldn't have managed without them. (Dad was kicked off hospice care four times between 2009 and 2013, so I know what's like to not have those resources available. I think my biggest frustration was when Dad would get a urinary infection, I would do a dip test and if it was positive needed to take the culture to the Lab. If his doctor wasn't in that day, the others wouldn't call the orders in because he hadn't been I the office for a year. They actually would recommend I take him to the ER, knowing we couldn't transport him in our car because he was in a wheelchair and could not help load himself and transport vans are often not available on less than a day's notice.

I'll be praying for you as you face the challenges of caring for an elder parents. Bless you for doing this for, your Mom.

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Peggy - I understand your pain.  I ruptured three disks in my lower back in 2007 and had a three-level spinal fusion in November 2008.  The pain, both before and after surgery, was horrific.  It probably took about two and a half years until I could go about my day-to-day life without significant pain.  I can't take any NSAIDs, because I had stomach surgery years ago.  I rely on narcotics (oxycodone) when I'm in bad pain.  Yes, I do get flare-ups.  I'm experiencing one now after doing some yard work.  Well, someone has to do it, and I'm not wealthy enough to hire a landscaping service!

 

I would try acupuncture again.  Maybe don't go to the same place.  Talk to them in advance about your concerns.  I have a friend in Vermont (actually, it's Mary from MQX) who had horrible back pain and sciatica, and got great relief from acupuncture.  She had no medical insurance, so couldn't got the epidural or surgery route, and she decided to try it.  The first few visits left her feeling very uncomfortable, and she wasn't sure she would continue, but eventually she began to feel relief and is doing so well now.  Drugs aren't always the best route.  I think ancient, natural methods work better.  I'm actually considering going for the sciatica I am now experiencing.  I've given it a few days, and I am missing out on my sleep, because it's keeping me awake at night.  The narcotics aren't helping, so it may be the best route for me.

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I can't say I have had pain quite as severe as yours, I have reverse curve in my neck, but I finally went to a chiropractor that uses the Pettibon System and found relief. The chiropractors that use this method, treat you and also give you exercises to do. Their goal is for you not to have to come back for the "weekly adjustment", unlike most others. I wish you luck in finding something that works for you.

Chris

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Debbie, I second everything Heidi said.  Caring for parents or a spouse during the last part of their lives is a mental and physical challenge.  The emotional satisfaction of knowing they were treated well is the reward we get when it is over. My mom was given up to die at 76 when she lost a leg and had a colostomy due to blood clots and strokes.  She died at 98.......I took care of her much longer than she took care of me...but I wouldn't have had it any other way.  I took care of a brother and both my first and second husband until they died. I don't have a single regret about doing it.

 

You do need to take care of yourself any time you can or else the bottom will fall out of everything. You won't be any good to anyone if you wind up flat on your back for months. I'll keep you in my prayers.

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Have you tried something as simple as meditation?  I too have chronic pain and went through a pain management program that was really helpful.  It included PT, OT exercise, counseling which added some biofeedback.  If massage it very painful, ask to have less pressure.  If done properly it should not be worse than mildly uncomfortable.  The OT was helpful in that it helped me learn how to do things in the least stressful to my pain issues way.  I have been using accupunture for about a year and a half and it is covered by my insurance if it is "referred" by my primary care doc. and if it is one of a couple who do it in my town.  I used to have a friend with terrible neck and shoulder pain after having a store in a mall's security gate fall on her head.  She found a type of "cranio-sacral" work helped her.  The gate caused her head to be jammed into her neck, into her body.  She also found that if she did Qi Gong exercises regularly it  helped. I don't know if you have tried any of these things.  Best wishes. Pain sucks!

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Sometimes it seems that I go around the mountain when all I really need to do is cut thru the gap......I am doing better now since the prednisone reduced the inflammation around the vertebra in my lower back. I know that I still need to see a dr about it, but it is at a point where I can cope with everyday stress and strain on my back without the intense pain I was experiencing. And I don't have to take any more of the prednisone. 

If you are having chronic pain, what I meant to say in my long winded way, was perhaps trying a different medication that works in a different way, to calm the pain pathway, might help better than narcotics. Steroids do have  a place in pain control. Narcotics and/or medications like nsaids, that can hurt your heart, are not the only drugs that reduce inflammation and help achieve pain reduction.

Thank you for all the suggestions and prayers. I am definitely going to see about the sit to stand lift for Mom. I believe that would benefit the both of us. And Peggy, ask the pain drs about a short course of oral prednisone or decadron. It's not for long time use, but might give you some immediate relief.

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I know I can't help you or anyone else that has posted regarding their pain and suffering.  I will start praying for all of you as I know how the chronic pain can be.  I had back surgery after a year of PT and the doc found bone floating around in my back.  The pain would take me to my knees every time I got out of the car.  Embarrassing but I culdn't help it.  I wish I could remember his name as he was the absolute best and he moved to Columbia MO shortly after my surgery.  That was in 1998 or so.

Joan

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Thanks everyone for all of your responses.  I am still really suffering.  I took a little Vicodin yesterday out of desperation and got quite ill from it.  Just doubled my problems.  I also had some weird nightmares!    I was afraid to take anything today except one muscle relaxant.  Just sat on the couch all day.  I fell asleep this afternoon and had another nightmare where I was falling off of a cliff and woke up yelling!  How strange!   All I can do right now is make sure my pets are fed and clean.  My husband is doing everything.  He encouraged me to try PT one last time, and I am sure he regrets it now.  I think some serious damage has been done and I am not going back ever again.  I hope this eases up soon.  Chris, what is a "reverse curve" in your neck?  I have been told I have a "forward head."  I wonder if that is the same thing.

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