Has anyone been told the reason for their pain is DDD and had a spinal fusion?
Hi all - looking for some answers/ help etc
Lived with chronic pain in my spine and some on off pain in my knee for 15 years ( since the age of 24) . Was initially told I had a degenerative disc caused by DDD and had two spinal fusions . However, since then the pain has just increased despite a million different procedures including injections, ablations , infusions, Botox to back, physio, osteo , chiro etc
I worked hard to get to a place where I was able to exercise regularly and work full time ( albeit with constant pain )
However, in September 2022 this pain increased to the point that my lifestyle completely changed . The pain spread to my knee and now my Achilles and heel. The fatigue has been unbelievable. I feel like a shadow of my former self.
I also have colitis so a neurosurgeon suggested I see a rheumatologist.
The rheumatologist tested me for the HLA gene but I was negative . The MRI showed sacroilitis and he said I also had plantar fasciitis and Achilles tendonitis.
My inflammation markers were very high but then later reduced - I am anaemic but not low iron levels.
He thinks it’s highly likely I have AS but there’s also a chance the sacroilitis is due to my previous surgeries .
I am waiting to be transferred from his private practise to NHS so that I can hopefully try biologics as it’s my last hope.
I am also BRCA2+ and have had preventative mastectomy.
I know there is discussion that other genes are involved … just interested to know other people’s stories and if anyone can relate .
I am losing my mind!!
LucyB84, I hope I'm doing this correctly. My 1st time to post or reply here. Reading about your experiences is virtually a carbon copy of mine! In my early 20s the Chiropractor said I had a spine of an 80 year old. I just went through life overcoming the pain, etc. At age 45 I had 3 vertebrae in my cervical spine fused. At age 48, I had two open lumbar surgeries ending with 3 vertebrae fused there. At 54 years old I had my left shoulder rebuilt with 7 anchors due to ligaments pulled away from the bones. Now I am waiting insurance approval for right S/I Joint Fusion. About 8 months ago I was diagnosed with Ankylosing Spondylitis. My lab workup wasn't to bad, but with multiple Radiological images and clinical evidence, as well as my left S/I Joint was autofused. I have not been able to start any biologics as the co pay was about $1800 a month. However, ibuprofen 800's and watch eating inflammatory foods, I am getting a little relief.
,
Thanks for posting and sharing your difficult journey.
May it provide a bit of comfort to know you are not alone.
I will be keeping you in my thoughts in hopes that the insurance approval will come through soon.
Please keep us updated when you get a chance.
~Doreen (Team Member)
I'd love to know the role of other gene markers, too, such as HLA-DR4 in people who are symptomatic but do not have HLA-B27.
,
That's a great question, and perhaps one that is beyond my wheelhouse.
However, being that HLA-DR4 is associated with diseases including Rheumatoid Arthritis and Lupus, there certainly seems to be a connection between many of these auto-immune diseases.
~Doreen (Team Member)
Hello! Thanks for jumping on with a great topic to explore. Investigating the significance of markers like HLA-DR4 in those without HLA-B27 could provide valuable insights into the complexity of the condition and potentially lead to more personalized treatment approaches. I recently read an article that may interest you. https://ankylosingspondylitisnews.com/2024/04/15/findings-add-understanding-as-disease-mechanisms-inflammation/?utm_source=ANK&utm_campaign=b6f6167468-Email_ENL_US_ANK&utm_medium=email&utm_term=0_0d078fd81e-b6f6167468-74243233 Wishing you well. Rebecca (team member)
- also forgot to mention I was diagnosed with DDD early on also and DJD - have had 3 fusions and looking at having another in the lower back soon. It has helped my pain somewhat - not all of it - but my pain is definitely better. What was worrying was the amount of chronic inflammation I had throughout my body, and for how - decades. Warm wishes - Rebecca (comm moderator) Hi
and welcome to our site. It's great you've jumped right in and posted looking for relief and answers. DDD (degenerative disc disease) is a condition of aging and wear and tear on your spine. As everyone is different, it can be present in a wide range, causing light to extremely severe pain for an individual. It sounds like you've been through a tremendous amount of pain. It can be challenging and frustrating to experience such a significant shift in your health and lifestyle and can undoubtedly take a toll on both your physical and emotional well-being.
It's clear that you've worked hard to maintain a sense of normalcy and continue with your exercise routine despite the constant pain. As you are completely aware, experiencing a flare-up like the one you described can be incredibly overwhelming and may require adjustments to your lifestyle and treatment plan. It's vital to prioritize self-care during this time and to seek support from healthcare professionals who can help you manage your symptoms effectively. Have you discussed this increase of pain with your treating physician? It sounds like you have been trying to tackle this for a long time now.
The pain you describe is remarkably familiar. When in my worst flare, I had such pain described, down the leg to the Achilles tendon and into the foot, with excruciating fatigue.Living with chronic illness can indeed make you feel like a shadow of your former self, as it often impacts every aspect of your life, from physical abilities to emotional well-being. It's entirely understandable to feel this way, given the challenges and limitations that come with managing a long-term health condition.
Your struggle is valid as you fight with feelings of frustration, sadness, or loss that may arise from dealing with a chronic illness. It's okay to grieve for the life you once had and the things you may no longer be able to do in the same way. Allow yourself the time and space to process these emotions, without judgment.
A few things I wanted to bring up are firstly, how are you being treated for the pain? Have you begun a treatment regimen for spondyloarthritis? Biologics and/or DMARDs may be a topic to put on your physician's desk. Here is a link that may help. https://axialspondyloarthritis.net/medications
Secondly, the gene HLA-B27 can be used as a tool to see if you are more predisposed to developing spondyloarthritis (SpA). Just because you don't test positive for this gene doesn't mean you cannot develop SpA. And, vice versa, you have the gene, but you never develop symptoms of SpA. Here's an article that may help. https://axialspondyloarthritis.net/clinical/genes
My experience is semi-similar to yours but I've tested positive for HLA-B27. I, too, have had a bilateral mastectomy, as my sister succumbed to triple negative breast cancer at 45 years old, but I do not have the BRCA gene. I hope you get the chance to read the articles I mention above and that you begin to discover answers to your questions. As individuals we are, each and every one of us on separate journeys with chronic illness. What may work to help one, may not help another. Another scenario, we may be different, but the same treatment helped us both concisely.
We hope you find strength in understanding that you are embraced and valued within our community, and we encourage you to explore and learn more about what interests you. With regards, Rebecca (community moderator)
