March 30, 2020 at 3:39 pm #24013
I know that for many of us, back pain is just another part of aging. But, with carrying around and oxygen tank, bending to change supplies or replace oxygen, etc. I feel like there is more wear and tear on our back muscles. Even the simple act of breathing is strained for many of us.
I have had back issues since I was younger because of a spinal tumor that I was born with on my lower spine. My disks always had some sort of degeneration in them and I used to go for injections to help prevent against sciatic nerve pain. It could be very debilitating.
Do you manage back pain on top of your other medical conditions? Is your back pain caused by a genetic problem, or is this something that has developed over the years? How are you being managed for your back pain? Would you consider it chronic or is it more come and go?
March 30, 2020 at 7:11 pm #24018Colleen SteeleKeymaster
@brittany-foster back pain was a big problem for Cullen when he had PH. For many years it was mostly positional from having to use a lot of pillows to sleep every night. When he went into heart failure the back pain was sometimes unbearable. That pain was caused by his enlarged heart and being so skinny he could feel it pounding in both his chest and back.
I spent hours, upon hours and many sleepless nights rubbing his back. It helped but as soon as I would stop the pain would get severe again.
I still can’t get over how many serious medical challenges you have had to battle since childhood. Do you still have the spinal tumor or was that something that was able to be removed?
March 31, 2020 at 7:10 am #24024
Hi Colleen, the spinal tumor is part of a conditions that runs in my family. It also is connected to the cardiac and vascular conditions that I have. It’s all very complex and interesting how things are connected. Luckily, I don’t have the back tumor anymore. My mom had to have 3 surgeries and her final was in her 40s to remove the last bit of it. My sister has some of hers there still. It’s something that has more neurological effects like bladder and bowel control and now with my intestinal motility they think the damaged nerves are playing a part in that too. Definitely a geneticists dream LOL
March 31, 2020 at 3:20 pm #24046Jen CuevaModerator
Wow, @brittany-foster, that is so much for one family to deal with. Y’all are some strong women!
I do suffer from chronic back pain. Mine is more related to my kidney disease, so they say. That is usually the lower part of my back. I also tend to have pain in my upper back and shoulder areas, and this is more related to PH, I was told. For me, warm packs and some stretching helps, depending on the day. Other times, it can be excruciating, so I take something to try to help offer some relief.
@colleensteele that sounds awful for Cullen, but makes sense since he was so thin. Was his back pain localized or all over his back? I am happy that he had an awesome mom to rub it so he could get some relief. It sounds like many late nights for you, too.
March 31, 2020 at 4:49 pm #24061Carol VolckmannParticipant
Hey Brittney, bad backs run in my family and I had chronic pain for years. The only thing that did help me was acupuncture until one day I was unable to urinate. I ended up having a lamenectomy (sp) on L4-5. Swimming was the best therapy or just walking against the water while the water stayed chest high. Stretching helps, heat helps and having someone like Colleen to rub your back always feels better. Both my sister and one brother have spinal stenosis. A pain implant would help them tremendously but neither one will go for it. When my back was really bad I did take some pain meds.
I just cannot get over all the medical issues you have faced nearly your whole life – Colleen’s son, Jen. I so admire all of you, your strength, sense of humor and above all, the willingness to reach out to others! Love ya all!
April 1, 2020 at 12:54 pm #24072Jen CuevaModerator
Hey @cdvol3gmail-com, you are so kind. My pain management doctor mentioned an implanted pump. She said this may be something that we consider later.
How are you feeling? Are you ready to give that oxygen back?
We are grateful for the love and support he in the forums. It goes both ways. Sending you air hugs from Texas.
April 1, 2020 at 2:53 pm #24081
Thank you so much! This comes at the time where I really needed the encouragement and some support the most. I feel like posts here always end up coming at the right time, especially for me. I can’t thank everyone here enough for all of the support I have been shown the last few months that have been so difficult for my health. It really helps me push through it and motivates me to be stronger than what tries to bring me down.
April 1, 2020 at 5:51 pm #24095Carol VolckmannParticipant
I just called today to obtain authorization to return the oxygen generator and the canisters! I still have problems on any incline but that is normal with my PAH – so. I will keep walking and doing my breathing excersises and give back the oxygen for someone else can use.
I am so happy your doctor is thinking about the implantable pump for pain. It is made by Medtronic you can go on line and see how it all works.
Hey Brittney, when it just all gets to you call that little fur child over, you will not stop yourself from smiling and giving him a hug!!
Paw hugs and air hugs to you [email protected]
April 2, 2020 at 7:36 am #24107
April 2, 2020 at 3:20 pm #24129Jimi McintoshParticipant
A great mattress is essential, I do stretching exercises, I soak in epsom salt and I use a rub my wife makes from cocoanut oil, ginger and a few more essential oils. Really bad pain , 10-15 minutes alternating from hot to cold
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