Does anyone else have "mechanical" back issues such as spinal stenosis and a spondyloarthritis?
I have lumbar spinal stenosis and just had a steroid injection that lasted 3 weeks for the pain. The pain medical doctor told me that surgery would be next. I keep trying to tell my PCP and the pain doctor that I have pain in my thoracic and cervical spine, my hips, my pelvis, my ribs (when that strikes, I feel like I'm going to split in two horizontally), besides my Achilles tendons, and my shoulder joints. I also have psoriasis. I have had back pain and issues since I was in my late teens and am now 72. I have not had a recent MRI or x-ray of anything for 3 years. I also have Psoriasis on my scalp, neck, and inside/outside my ears. Can anyone else relate? PS My doctors don't understand the stiffness or fatigue. Thanks, Gayle
I can relate to your journey. I was put on disability from a great job in 1994. Nobody knew what was wrong with me. When I was 69 I was told I had a man's disease. The doctor dismissed as his patient because I asked questions about medications. I been great. Having an disease where don't look sick, being a women of 73 you might as well hang it up. My pcp knew every med I took but when it was time for refills she would not refill anything. From Thankgiving till after the New Year I was in a constant flare and withdraw from my medication. I'm my husbands caregiver after the siezuers started the only thing I could thing to do was put my husband in the hospital and me too. Would not answer one phone call.
Pat, I'm so sorry for all of your suffering. Every minute feels like hours. I know what it's like to have to stop the job or profession you love and that stinks. I worked in healthcare with a lot of great doctors but when I retired and moved across the state, I might has well have landed on a different planet! For all intents and purposes, there is NO healthcare where I live. I made an awful mistake moving here. That's really awful and dangerous that your PCP wouldn't refill your medications. Being a caretaker besides having a chronic illness yourself is too much. Either it's because you're a strong person or you figure what other choice do you have which is awful. Pat, I really hope something turns around for you going forward. Thanks for sharing your story. I am not alone. Gayle
Hi Gayle, I also have the symptoms that you have. I have suffered with back pain since I was little. I am 69 years old. That’s pretty much a lifetime of pain. I have recently broken out with psoriasis, this winter. This is new to me I have never had an outbreak and it was truly miserable. I have had 2 back fusions and 1 neck fusion. I also suffer from spinal stenosis top and bottom of my back which I have had surgery for. I have been very lucky with my surgeries . They have helped a great deal. Since I had them done. I also have a very awesome surgeon . This year I have had everything under the sun it seems. I ended up getting an infection in a knee replacement that I have had for fifteen years. I thought I had a piece of glass in my foot but when they cored it out I had a staph infection. I also ended up getting Pseudomonas Aeruginosa which is an antibiotic resistant superbug. Luckily I was able to fight it. . I also suffer from rib and back pain. Achilles tendon and pain in my knee wrists fingers and now a shoulder joint. Some days I don’t think I’m gonna make it. But I pick myself up and tell myself that as long as I can I’m gonna fight thrue it all. If you doctor doesn’t understand your pain and fatigue it’s time to find someone else. Having a physician that understands this disease is very important. I have had a lot of Dr.’s that ignore what I’m trying to tell them and it wasn’t till this year that I finally got the diagnosis of axial spondylitis. So hang in there, find a Dr. that understands what you are going thrue. And keep fighting!
Thanks for sharing your story and the encouragement. I feel so alone but keep on going (a Scottish trait from my mother, I think). You've really been through the war. I agree that it's time to find a different doctor. I thought I had found one yesterday after my PCP referred me to one of the only Rheumatologists in my area but I was wrong. The appointment lasted 3 hours and that was mostly waiting. I thought rigor mortis had set in. I found him to be silly and condescending. I'm a Clinical Medical Librarian (retired) and I expected to have a serious conversation with him but instead I saw a nurse practitioner and then the doctor. The NP was fine (although newly minted) but the doctor didn't take my answers to his few questions seriously. For example, he pronounced that I have "arthritis" and proceeded to talk about medication for Fibromyalgia. He as trying to force me to accept scripts for drugs that I have problems with (Gabapentin, extreme weight gain for which he said I could take one of the new weight loss drugs and two other drugs which cause me to faint). I was diagnosed with Fibromyalgia at Georgetown U. Medical Center in 1998 by Dr. Daniel Clauw - a leading expert and researcher on Fibro. So, I was at the appointment for 3 hours, mostly waiting and turning stiffer and stiffer. I challenged him at every silly notion he purported. He didn't like that because he was clearly in charge. Oh well, I'm not living in the Washington, DC area anymore and I would have to travel a distance to get to a qualified doctor. I have some tough decisions to make but I know I can't remain as I am now. Something has to change. And, yes, I'll keep fighting. Thanks for listening! Gayle Hello, Gayle. I am so sorry you have had this all-too-common experience with your rheumatologist. As one of our patient leaders writes in her article, "Besides the obvious medical expertise, you need someone who listens closely, is willing to put in real effort to get to know you, and is genuinely interested in your well-being." Yet finding a new doctor can be a huge challenge. The American College of Rheumatology (the professional organization for rheumatologists) has a "Find a Rheumatology Professional" page on their website where you can search by location and knowledge about a particular disease (search for Spondyloarthritis). Good luck on your search for a better healthcare team. All the best, Kathy (Team member)
Hi, Gayle! (
) Thanks for sharing all of that. It sounds really frustrating to have so many areas hurting and not feel understood by your doctors. Sometimes it helps to get a second opinion if your current doctors aren’t really listening. They will probably be more open to getting you some recent labs done to assess where you are currently. You deserve a care team that is open to listening to your concerns and pain. Also, getting updated imaging and labs can also help give your doctors a clearer picture. I really hope others can chime in and share there experience. Let us know if your looking for any specific information. We're here to help! All the best, Latoya (Team Member)
