I need some encouraging words
Posted , 7 users are following.
I've had some really bad health issue happen to me this year. In February I fell as I was getting out of my car and ended up breaking my left ankle in 3 places, spraining my right ankle, fracturing a rib and injuring my back even more then it already was. So it took me 3 months to heal from all of that. While I was healing from the fractures I was diagnosed with gastritis, iron deficiency anemia, diabetesbronchiectasis. then two months ago I bent over to get something out of the bottom drawer of the refrigerator and I felt my back spasm. I was then diagnosed with a fractured vertebrae. in the past 2 months I have increased the number of fractured vertebrae and now I have a total of 5. I saw a spine surgeon and he did kyphoplasty on the two lowest fractured vertebrae. unfortunately when he injected the cement into the fracture some of the material went into my artery and traveled through my heart and into my lungs. now I have a pulmonary embolism made of cement. actually I have a number of them in both lungs and they will be there for the rest of my life. that's because when the cement goes in its liquid and it then hardens. So I think what happened was it was in liquid form when it traveled through my artery and became solid once it reached my lungs. Because of all the fractures, the muscles in my back are spasming. I can't survive anymore of this. the pain I am in right now is so horrible I can't even describe it. In fact the only reason I can write this is because I am between spasms. They come on whenever I move wrong. I have a pain management doctor and she's giving me a tiny bit more pain med then I was already taking for my chronic back pain. some of you might know me from the PMR group. I have had PMR for 2 years and I have been on Prednisone for those 2 years. I'm sure that the prednisone created the initial problem of thinning my bones out even though I've been on calcium/vit. D for the entire time.
0 likes, 11 replies
constance.de amkoffee
Posted
You poor thing! I can't imagine the pain and discomfort you are going through. I can't help in any way, of course, but just want to commiserate with you.
Regards from Constance.
BoneAmi amkoffee
Posted
My goodness gracious. My heart goes out to you. I hope you can get some or better pain relief soon. Know that you are not alone, and that I and others understand more than you know. Do you mind me asking how old you are? Have you been diagnosed with osteoporosis? Feel free to send me a private message if you would rather. My best to you for a quick recovery.
amkoffee BoneAmi
Posted
Thank you for your kind words. I am 57 yo. In April I had a bone density test done and was informed that I had osteopenia. But after my first vertabra fractured my doctor said it indicated osteoporosis. She explained that they only measure 3 points on the body. Apparently they didn't check my back very well.
Prohow amkoffee
Posted
YOU ARE EXPERIENCING BAD LUCK THAT CAN CHANGE AS YOU WORK ON THE PAIN ONE AT A TIME
YOU HAVE TO SURVIVE AND THRIVE BECAUSE YOU MEAN SOMETHING IMPORTANT TO YOUR HUSBAND BROTHERS,SISTERS AND CHILDREN AND FRIENDS YOU CANNOT GIVE UP OR ALWAYS LIVE IN YOUR UNCOMFORTABLE TIMES
WE ARE ON THIS SIGHT TOGETHER AND WE CARE BECAUSE THERE BUT THE GRACE OF GOD GO I WE ALL HAVE OUR PAIN AND MINE IS FROM L1- L3 and i have one doctor saying its fractured and one doctor saying its not fractured. so we all have challenges . BE HAPPY YOU HAVE PEOPLE THAT CARE AND CRACK A SMILE TO STRANGERS AND FRIENDS
Anhaga amkoffee
Posted
There must be someone in your area who can help release those spasmed muscles. Some physiotherapists are brilliant at this. I may have mentioned about the dry needling before. It's possible to elicit as similar response just through a certain type of massage. It resets the electrical signals in your muscles which currently are causing them to spasm.
Where do you live? ❤
amkoffee Anhaga
Posted
I have heard many people talk about dry needling so I asked my pain management doctor and she said they do not do that. She did not give an opinion which is very unlike her so I don't know how she feels about it but I do know a lot of people that swear by it. I live in the US in the very middle of the country. I live in Wichita Kansas. You know... Dorothy and the Tin Man. How rough is needling? I would not want to do anything that would disrupt the fractured bones. but doing something that will help release some of these muscles so that they will quit spasming and cramping would be Heaven Sent.
Anhaga amkoffee
Posted
I think there are sometimes problems with it, I'd only want it done by an experienced trained person who knew what they were doing. They don't go near your bones, just into the muscles. I had several treatments, starting with the muscles on either side of the base of my spine, and each treatment working up the spine until she got to the neck - and that I did find very odd, it made me cry although it really wasn't any more painful than the other treatments. Apparently that's not an uncommon reaction. I found sometimes the needle was very painful, just like someone sticking a needle into you. Other times it didn't seem to do much of anything, and other times it felt just like a finger pressing right into my flesh (not painful). Some months later she did a much shorter couple of sessions, and none since then. She never treated the neck with the needles again, although she gives me other treatment.
john93584 amkoffee
Posted
My poor dear I feel so bad for you. I can understand at least some of your pain because I have PMR, osteoporosis, iron deficiency anaemia too as well as a badly damaged spine which I have had all of my life, amongst several other chronic conditions, though I hasten to add that I have not had any broken vertebrae!!
I am at the end of the PMR now thank goodness but I am struggling to get off the Prednisolone steroids which is my number one priority. It is this drug that has brought on the anaemia and the osteoporosis and goodness knows what else.
I am 70 and the rheumatologist has said that because every time I cut the dose of steroid my pain levels go off the scale I should stay on the Prednisolone for quality of life but I am determined to get off the things so I am toughing it out as much as I can .
Anyway once more you have my complete sympathy and understanding and I hope that the injuries you sustained when you fell getting out of your car are healing. I am sending you love and healing. If you want to post to me again please feel free.
Love
John
amkoffee john93584
Posted
With all of your conditions you do know how I feel . the worst part about the fractured vertebrae are the spasms that they're causing . everytime I move just right they start . I had about 2 days of just almost constant Charlie Horse like spasms in my back and the only thing that would make it stop was to stand up. But I couldn't get up on my own because of the pain so fortunately my husband was around because it was the weekend and he wasn't working. as soon as I started yelling he came rushing in to help me to stand up until the spasms stopped. I still get spasms now and then but nothing like they were.
As for prednisone I understand completely where you're coming from. My osteoporosis and my diabetes are both from the prednisone. I didn't know you could get anemia from it. the last two weeks I was alternating between 5 and 6 mg and today when I set up my weekly planner I'm starting with 5 mg every day starting tomorrow. what dose are you on? It might be that you are dropping your dosage in too much on each step. do you belong to the PMR group on this site? It's a very active site and full of some very informative people if you don't belong now you really should join them.
Anhaga john93584
Posted
I had low iron before I started pred. Low iron is very common with autoimmune disease. It was sorted quite easily with liquid iron supplements taken over about a year.
john93584 amkoffee
Posted
Hi Amkoffee, those spasms sound horrendous, they remind me of the early days of the PMR, the most ill I have ever felt and that includes two heart attacks, I couldn't even dress myself some days.
I am on 2mg of Prednisolone at present, I have had terrible troubles getting down from 3mg. After the usual problems getting below 7mg which was easier in fact than getting below 3mg, I breezed it down to 3mg and there I got stuck.
I have been to my GP today because my right knee has become very painful and it is difficult to walk, he thinks it us osteo arthritis which I already have in my hands and ankles, I have to have an X Ray. In the last few days I have had a return to severe PMR like symptoms as well so I also have to have yet another blood test, I have had so many that they should put a tap in my arm, it would be easier😊.
I haven't explored the PMR forum on here but I do belong to PMR &GCA UK which is very helpful, they also have a Facebook page.
I am sorry that I have been talking about myself a lot this post.
Love