Pain on walking
Hi everyone. I am new here! Only formally diagnosed yesterday, after at least 7 years of being dismissed.
I am laid wide awake uncomfortable in bed and questioning my diagnosis already. My stiffness has become worse very quickly and driving to work or standing up for a while is very painful (I have a list as long as my arm really which could be related or unrelated). I was diagnosed based on symptoms and SIJ inflammation on MRI. All blood work normal. Awaiting MRI of neck due to reduced range of movement.
Two things which are throwing me which don't fit:
Laying on my back with my knees straight exacerbate the pain and
I get pain if I am walking slow. So much so that I have to force myself into a hunched position, which is very painful and spasm-y, then relieves pain temporarily.
Does anyone else get this pain when walking? Its usually when walking slow/dordeling with kids. Not as bad if get a proper walk going!
I have pain in my lower left side in the front when I walk. I use a shopping cart when shopping for support however, some days my pain level shoots from 3 to 9 within a short distance. Then I have to return to the entrance and use a mechanical cart. I still don't know what's causing it. My docs don't know either 😕
- It's difficult day to day with this kind of pain. I'm not sure when you say "lower left side" if you mean the hip or the foot. It sounds mechanical such as an orthopedic issue though. This is how I currently get with my right hip. I can only walk so much then the pain and neuropathy hit 10 minutes later. Then I find the food cart unable to assist and I go for the sitting assistance, as you. I am scheduled with my surgeon for a hip replacement in a week. Maybe seeing an orthopedic physician can help determine the cause of your debilitating pain. I have a center with different orthopedic doctors, one for my hands, another for my foot, and another for my spine, etc. There's PT, an imaging center, and on the second floor a surgery center. I hope you do get to the bottom of the issue. Sending healing your way. Rebecca (team member)
Some times I forget, but one huge thing that has changed since I began this fight with AS is that I exercise a lot more. I do water exercise for an hour 3 days a week and I do exercise with a group of women who, like me, have MS 5 days a week for an hour. So very worth it! LisaWY kizmazz,
I do have neuropathy. Because at the time I was only diagnosed with Multiple Sclerosis, and the MS drug I was on gave me diabetes, they did a test and found out that the neuropathy was partial MS and partial unknown. I guess that meant they don't have a clue. 😁
I took benfotiamine (available online) for years to assist. It did help. However, AS can attack any bones/ligaments, so I would suspect that first.
I changed my diet to avoid gluten and nightshades. It was hard, but paid off hugely. I did the AIP autoimmune diet to help me identify triggers that were always painful to my body, and it helped. I started with "the healing kitchen" by Alaena Huber and Sarah Ballantyne. Nowdays, there are many AIP reciped online. Otherwise most paleo cookbooks can be altered to adjust to AIP. My feet improved.
AS is a difficult road to travel. I hope you get the assistance you need from your doctor.The best way to get good help is to always go in with a list of what's going on with your body, what you've done, and questions.
Take Care,
Lisa
,
We always appreciate you sharing your experience, helpful tips, and kind words of support.
Thank you, Doreen (Team Member)
- curious to know how you are feeling after the holidays. I know I've had so many problems with inflammation in my spine from spondy that walking has become quite difficult. Also, the inflammation is breaking down many of my joints in my spine and my extremities. As we are all different, we try to manage different symptoms. SIJ inflammation would definitely make it painful to walk and get about. Curious - have you had MRIs of the spine done? I have just had surgery on my lower spine as it shifted and had spondylolisthesis and a fracture. Also had surgery to fuse my neck for a spondylolisthesis. It was so painful had to lean over to help. I could only hunch over to walk for a long time. It was quite painful. I hope you get this message and find some useful information. Please stay in touch. Having a community such as this is quite useful and even comforting as you walk on this AxSpA journey. Happy New Year! Rebecca (team member) hi! I was certain that my issue was spondylolisthesis. My MRI shows bone marrow odema in the SIJs and I have some effusion and degeneration of the facet joints vut they said not to worry about that but I did read it can lead to spondylolisthesis instability. I do have another MRI this week of all my spine so I wonder what it will show. Hopefully doesnt come back and inconclusive and have my diagnosis taken away. Seen so many stories like that. Ive just had my vaccines today while I wait for my first biologic delivery and a very upsetting appointment about foot pain with physio which was literally no help. Didn’t even ask my medical history. It's great to hear from you. Glad you responded. Even if not spondylolisthesis, any spine inflammation can make walking quite painful. I'm glad you are following up with MRI scans and being proactive about your health. Bone marrow edema is also a sign of spondyloarthritis - I have it in my pelvis where the hamstring attaches to the pelvis. And I've also developed osteoporosis on that same side. There's also enthesitis which is tendon and ligament pain. I had a horrible bout of enthesitis (flare) before starting biologicals. Both are quite painful. My SIJs have no evidence of inflammation which was concerning to me because that is the most common symptom (or so it is said) that spondy is present. Have you been given Humira to start? I'm sorry that physio for your foot started off to a terrible start. Physio should take a full history and discuss things with you before beginning any exercises. I would get a name for a different physio center from your rheumy or GP. I wouldn't worry about having the AS diagnosis dropped - the edema in your SIJs is enough to warrant the diagnosis. I hope you get answers soon. If you want to read up on enthesitis and bone marrow edema - here are some links to articles with great information - https://www.myspondylitisteam.com/resources/bone-marrow-edema-and-ankylosing-spondylitis -and- https://axialspondyloarthritis.net/anatomy Hope you find some relief soon. Rebecca (team member)
