physical therapy and getting worse

I am a 44 year old women with severe osteoporosis and 3 compressions fractures. Was misdiagnosed for over a year and told pain was all in my head until I suggested a bone density test. Over 8 xrays missed the fractures. When a mri was finally ordered the damage was already done, the fractures had healed...not a candidate for kyohoplasty. Most likely caused by extremely low body weight and no period in over 10 years. Went from a strong, vibrant women to a invalid whose 85 year old mother is stronger than me. Can no longer lift anything heavier than a water bottle, have a severe potruding stomach, horrible kyphosis, and forward head posture. Used to wear size 1/3 now a size 13, bra size up from 34 to 42 due to new posture. I am putting on weight, up to 90 lbs but lost 3 inches in height, now only 5 ft tall. Constant upper back scapular pain, severe, unbearable chest tightness and spasms, and zero range of motion in my upper body due to constant pain and limited activity. My question is I am now in my fourth round of physical ttherapy(my first since my diagnosis) and I feel worse than when I started with increased spasms, tightness, and horrific pain. My pt says I have multiple trigger points in upper back and rib/chest area. She painfully trys to relaease them, which slightly loosens them, but only for a few minutes. I cannot stand to look at myself. I can no longer drive, push a cart or barely walk without extreme pain and spasms. I am on Actonel, valium ultram tylenol and advil....doesnt put a dent in pain or spasms. I don't know if pt is right for me. But if I dont do it I know my muscles will atrophy more! Does anyone know of any pt's in the Chicagoland area who specializes in osteoporosis? Have an apt with rheumotologist next month. Being treated now from a pain mgt doctor who does nothing for me and my regular doctor. I am at my wits end! I cry constantly because of the pain and spasms and my new appearance. I need help but do not know where to turn. If anyone has any suggestions or advice for me it would be greatly appretiated. I don't want to give up but I see no light at the end of the tunnel. Thank you!!!!

By OWIE
Posted August 3, 2009 at 8:55 am
Report post

Jude23 Celebrex has helped me a great deal. You can only take it twice a day, from what I understand, but works well combined with Ultram for me. Have you been taking vitamins? How about glucosamine chondroitin? Magnesium? This is an incredible website along with NOF. There's plenty of help for you to become more informed, along with lots of support. Hang in there!!!! Everybody will help. Try the Tones Your Bones website too. Just Google it.

By OWIE
Posted August 3, 2009 at 9:01 am
Report post

It's Tone Your Bones. It includes diet, exercises, recipes, and a whole lot more. It's put out by UAB, University of Alabama at Birmingham. They are an all inclusive osteoporosis clinic including, nutrition, physical therapy, rheumatologist. Anyone can go to the website. It's fantastic!!!!!!!!!!!

By liliane
Posted August 3, 2009 at 10:27 am
Report post

Get off Actonel! Making you worse!
Take Ambien and sleep, sleep. Lot's of rest and good food---real food and fresh. Not supplements.
Will yourself to get well.

By karenatheklineback
Posted August 3, 2009 at 10:38 am
Report post

Hello, Jude23
I will ask around for a pt in your area who specializes in low bone density. If what you are doing is making you feel worse, though, then that is a pretty indication you are not working with the right person. Keep looking. Talk to other clinics. Go in person and talk to the director of the clinic or the head physical therapist. Tell them what you are experiencing. PT should NOT create pain. We all know what muscle soreness feels like and muscle soreness after pt or any workout is normal but structural pain is not normal.
From the description of your injuries and postural changes, I am not surprised that you are hurting but I would also be surprised if you could not find someone in all of Chicago that can help you reduce your pain somewhat. You are going to have to do some serious leg work (get on the phone, talk to lots of people) and you will find some help.
Good luck and I'll let you know if hear of anyone in your area. Karena

By debbie59
Posted August 3, 2009 at 1:05 pm
Report post

When you see the rheumatologist he will check your blood levels for various things like calcium and your vitamin D levels. Tell him about the spasms. Are you also tired and have general muscle weakness? You may need more potassium and magnesium. This helped me immensely with the spasms. I haven't heard much good about actonel. I also have multiple compression fractures and am almost at the end of 2 years on forteo. It has worked wonders for me and many other people on this site. Good Luck

By sdivas
Posted August 3, 2009 at 2:15 pm
Report post

Jude23, you didn't mention where you were going for physical therapy, but are you aware of ATI Phyiscal Therapy, 327 Genderson Dr. Suite C, Carol Stream, IL. (630) 784-3251. There is also a transportation service provided for patients. You will need a script from your doctor, and if you are HMO, only Aetna is accepted, but otherwise, patients with other plans or out of pocket are accepted. Another suggestion is contacting Sara Meeks (community member) www.sarameekspt.com and ask if she has a listing of a PT that has taken her training that is in your area. I'm so sorry you are going through so much discomfort because this seem to be the time when you will have to advocate for yourself in finding the help that you need. Please let us know if you find help and get some relief. Sandi

By Ranita
Posted August 3, 2009 at 9:44 pm
Report post

I see an endocrinologist who is searching long and hard to find an answer as to why I have osteoporosis at such a young age. I was on bisphospante therapy IV for 8 years (aredia infusions) and it did not help in fact made my bones worse. I started on Fosamax by mouth last week so we will see how it goes. And next week I go for more labs and bone density test. But definetly I agree with the others you have to do a lot of leg work and ask around and as I have learned it takes lots of patience but this site has been very helpful for me and very encouraging. I wish you the best don't give up. Just be determined to get relief and do the things you can control exercise diet rest Melody

By petplant
Posted August 3, 2009 at 9:50 pm
Report post

I recommend Acupuncture or Acupressure for pain. Acupuncture is probably better - less pressure. If you find a good Acupuncturist, and most of them are good, it will give you some pain relief. I have been told that this could also help stop the bone deterioration, but I don't know for sure. If you go to someone who is also an herbalist, that could also help. Chinatown, if you have one nearby, is a good place to look. (Note that all acupuncturists are not Chinese.)
I can vouch for the pain relief of Acupuncture.

By jude23
Posted August 4, 2009 at 2:32 am
Report post

Thank all of you for your great advice and encouragement. Just some other quick facts... I have had my calcium, vit d ,magnesium, and every other blood test known to man checked before I was diagnosed and everything was normal. My first doctor I saw who practices with a more holistic approach put me on Miacalcin nasal spray and also ran a saliva test and said I was low on progesterone and Dhea. I filled the Miacalcin and progesterone cream(bio-identical) but never the Dhea. But every one kept telling me with my numbers(t score spine -5.5, hip -4.6) so bad I needed something stronger..so thus the actonel. Still doing the progesterne cream but never started dhea, maybe I should. I now have a new doctor who put me on current meds. I am just so torn on the best approach. I guess I will see what the rheumatologist says. One thing is that I sleep great, the only time I am not in pain. Of course I sleep with 4 pillows, almost sitting up in bed, which I know does nothing good for my posture!!! I just don't understand why my range of motion in my upper body is so bad. I think I became so week due to inactivity and the muscles atrophied. I cannot reach higher than my shoulders! I put a call into my pain mgt dr. today to see if I might need another xray or mri just to make sure I haven't fractured anything else. Hopefully she will order one. But all she ever says is continue pt and see me in 6 wks!! Any movement of my upper body causes severe spasms and tighness...just the simple act of brushing my teeth or stirring some tea....its crazy!!! I just bought Sara Meeks book walk tall and the books Stand tall, and Better Bones , Better Body. Started reading them, wish I could find someone in my area who took one of Sara's seminars. And by the way I live in Carol Stream Illinois so I will call ATI this week to see if there is a pt there that deals with osteoporosis. Also near a hospital that has a big physical therapy dept. I appreicate all of your help. I don't want to give up... but sometimes the pain is to bad I get so frustrated and depressed. I want my life back!!!! I feel like this is a death sentence. Thank you for the encourement, my family is supportive but they just dont understand. I was always the strong one in the family, doing things for everyone and now I depend on everyone else and I dont think they want to face this. I'll keep you update. Thank you everyone....you give me hope!

By jude23
Posted August 4, 2009 at 2:43 am
Report post

One more thing....I will check out that web site and look into celebrex. Other nsaids dont seem to work... but maybe this one will. Wish I could find a good muscle relaxant. I take valium but only 2.5 mg 2x day...probably not enough buy you hear about the addiction aspects of it...and I hate to take pills. Doc says I can take 5mgs up to 3x a day, but if it doesnt work in the smaller dose don't know if it would help taking more. Also the accupuncture suggestion sounds interesting and I know my insurance covers it. Half of my problem is that I am always bracing for pains and spasms that the fear and anxiety make my muscles tighter. Anyone heard of botox injections to relax muscles? Thanks again!! God bless.

By rosied51
Posted August 4, 2009 at 8:00 am
Report post

I can totally relate to your comment about being the strong one in the family, I too use to do everything now I am limited. I have osteporosis & ostepeana of the hip, when I stand my lower spine is in agony.

By liliane
Posted August 4, 2009 at 9:03 am
Report post

I reiterate----You are poisoning your body with Actonel. Actonel inhibits the growth of new bone. It works by holding on to old bone. Therefore all your horrible symptpoms. The body wants to and needs to build new bone. Actonel is crippling you. Everything else you do is merely a bandaid.
I was there.
Ask your doctors about Forteo----builds "new" bone and heals fractures.
Also, educate yourself on the internet---it's all there.
Search.

By Oakside
Posted August 4, 2009 at 9:08 am
Report post

Jude
With a break and several compression fractures in my spine I now have a spinal brace obtained from, and fitted at, the hospital which is a great success. I only wear it for activities that would otherwise cause pain (as I don't want to risk my muscles getting weaker) and it has helped my posture, and therefore pain levels enormously. Having a bag that has a strap round my hips to carry things means that weight is not supported by my spine (ie. less pain). Personally I find side effects of most medicines unacceptable.

By Loods
Posted August 4, 2009 at 9:24 am
Report post

Hi Jude23,

I'm not sure I can suggest anything to help with your physical pain but like you I am aware of how much my body shape has changed and I agree it is very depressing.

I am 47 and my spine has become increasingly twisted over the past 2 years (I have lost 4 inches), plus I am pigeon chested. It isn't easy finding clothes that look nice but what I will say is try and make the best of what you have. It is surprising how wearing a few colourful scarves and bright jewellery can make you feel better and bring your face alive. Even when I am feeling unwell I put make-up on because it makes me feel better knowing I look better. It has a sort of knock on effect.

Please don't be so harsh on yourself, you can't help your physical appearance that has been caused by your condition, you are still the same person everyone loved before.

I do hope you can get your pain under control and the help you need because I am sure then you will feel more positive about yourself and how you look.

By shoreside
Posted August 4, 2009 at 11:50 am
Report post

I am in full agreement with the suggestion to contact Sara Meeks, PT. She is an expert in the area and keeps a list of the therapists who have taken her courses.

It sounds as though you might benefit from a Spinomed spinal orthosis. It may serve to decrease your pain and strengthen those severely weakened back extensors.

Please keep looking for a PT experienced in osteoporosis. We are out here and can help.

By MSGSUZANNE24
Posted August 4, 2009 at 9:10 pm
Report post

I just want to extend my heartfelt sympathy and encouragement to you. I don't believe Actonel is causing all your problems--many seemed to have begun before you took that drug. But the above description is right: all the bisphosphanates including Reclast stop the sluffing of "old bone"--the osteoclasts--and unless the old bone is sluffed off the osteoblasts are not activated to create new bone. Since you were very underweight and stopped menstruating at a very early age I suspect something else is going on. Were you a dancer or did you have anorexia nervosa?
Put all the ideas together above and you are on your way. Let me add: you could look for a rehabilitation psychologist to help you get your head together. I trained as one and no longer practice in that area. But such therapists can be of great help in facing your enormous physical difficulties. Next you must get your nutrition into shape. Something is going on with you that has not been fully assessed. As above, an endocrinologist or rheumatologist may also be helpful--however, those doctors may not look at all your hormone levels. Do you have enough estrogen, testosterone and how are you managing your calcium and so on? As well for pain I agree with the suggestions of acupuncture/acupressure and learning breathing and relaxation techniques. As for building new bone on your own add Tai Chi to PT. It stimulates the body to utilize nutrients that feed our bones. You are much too young to give up. And get a social network that supports you with love, humor and encouragement. That can be hugely difficult in our me/materialistic culture, but not impossible. God Bless. Michele Garden

By borobelle
Posted August 4, 2009 at 11:46 pm
Report post

Dear Jude23,
Have you ever been tested for Celiac Disease? This is an intolerance to wheat which can impede the absorption of nutrients, including calcium and other minerals necessary for bone production. It can lead to osteoporosis. It is often misdiagnosed as IBS. Low body weight is not unusual. You eat, but you don't gain. There are two blood tests which can reveal celiac, but the gold standard is actually a procedure similar to an endoscopy. Really nothing you've said hints at Celiac other than your low weight. You might mention this to a doctor if you have digestive issues too. Explore any possibilities. Many times, I believe there are multiple factors, but this can surely be one that can contribute to bone loss and poor health in general.

By SuzaFrancina
Posted August 5, 2009 at 2:00 pm
Report post

It has been a real education reading all this! What I learn here helps me to be a better informed yoga teacher for my students with osteoporosis.

I'm also continuing to learn more from the website www.BetterBones.com/ . I found the information on fracture prevention and healing especially useful. Here is a direct link: http://www.betterbones.com/default.aspx

By SuzaFrancina
Posted August 5, 2009 at 2:05 pm
Report post

The above link went to the home page, so I'll try again.
Here is the direct link to Fracture Prevention and Healing:

http://www.betterbones.com/bonefracture/default.aspx

Welcome to Inspire!

Explore topics in this discussion:

29 replies

Add to the discussion

NOF on Twitter

Group leaders

You