Connect with others who understand.

  •   Learn from expert-reviewed resources
  •   Real advice from people who’ve been there
  •   People who understand what you’re going through
Sign Up Log In
All Resources Treatments A-Z Personal Assistant Help Center Crisis
Powered By
Real members of MySpondylitisTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Severe pain top of my spine and tens machine not helping nothing is.

A MySpondylitisTeam Member asked a question 💭
Northumberland uk

I saw rheumatologist on Monday who was as useless as a chocolate Fire Guard, asking questions and getting ridiculous responses doesn’t help but in the uk this is what happens, he doesn’t think I am in a flare just inflammation in my back! I tell him about glucose and wanting more sweet stuff for energy he goes oh well see your doctor for a test
I tell him about the tingling he says best see your doc probably nerves
He asks me to bend and yes at the time I could bend down he said that’s good,… read more

May 4
 · 
Reactions

Answer Summary

Members rallied around someone dealing with severe spine pain and a frustrating rheumatology appointment, offering both emotional validation... Read more

Members rallied around someone dealing with severe spine pain and a frustrating rheumatology appointment, offering both emotional validation and practical suggestions like asking to be seen by a different physician, trying muscle relaxers such as Methocarbamol, and searching YouTube for upper thoracic stretches paired with deep breathing exercises. Several members shared their own experiences with dismissive doctors, the emotional toll of caregiving stress, and how poor sleep and diet can worsen inflammation and pain. A recurring theme was the power of community support when medical care falls short, with members checking in on each other, sharing helpful websites, and reminding one another that they are never alone in the journey.

A MySpondylitisTeam Member

@A MySpondylitisTeam Member - You have been dealing with a lot my friend, not knowing answers to important questions makes that squirrel wheel in our head spin faster than normal. I hope you and your husband have found some peace. My mother and brother both passed away within 6 months of each other from cancer, my brother 15 years and 1 day from my dad, they both had a brain cancer. I've found peace in God, who gives me nothing more than I can take, but I'm feeling full. I've given up for now on "taking care of myself through pacing" and just trying to live and be the best me possible. If it hurts, then I know I'm alive...right? It's beautiful in the valley, cherries are blooming, apples getting ready to. Be well, stay safe, you're never alone if you need to vent or let loose. Blessings to you and your husband.

May 22
A MySpondylitisTeam Member

@A MySpondylitisTeam Member & JanEdge - thank you both, it's nice to have friends to talk to that understand the aches and issues that AS invites itself into. It's a daily whirlwind adventure.

May 23
A MySpondylitisTeam Member

Stress will always amplify physical as well as psychological challenges.

May 5
A MySpondylitisTeam Member

Steroids are amazing, I had a lung infection years ago and they gave me a 10 day graduated build up/taper down prescription and I felt amazing and could work my butt off. Whenever I've adk for more...denied. Something about bone density and health. All I know is I felt really healthy with the Steroids. Its a sad state. Best wishes on this frustrating journey.

May 4
MySpondylitisTeam

That sounds like an absolutely exhausting and demoralising appointment — and "chocolate fire guard" is a perfect description! Please don't give up though, because you genuinely deserve better care than that.

What you're describing is unfortunately something many MySpondylitisTeam members have experienced — feeling Show Full Answer

That sounds like an absolutely exhausting and demoralising appointment — and "chocolate fire guard" is a perfect description! Please don't give up though, because you genuinely deserve better care than that.

What you're describing is unfortunately something many MySpondylitisTeam members have experienced — feeling dismissed, rushed out, and unheard. One member shared: "Getting a doctor to listen, much less explain anything, is horrible." Another said: "Find a doctor who will listen to you and react accordingly — or move on."

That last bit of advice is really important here. A rheumatologist who isn't reviewing your medical records, ordering blood tests to check inflammation markers, or arranging follow-up appointments is not giving you the standard of care you need for spondylitis. Here are some steps worth considering:

- Request a second opinion from a different rheumatologist — you are entitled to this on the NHS
- Ask your GP to refer you to a rheumatologist who specialises in spondylitis specifically
- Keep a symptom diary before appointments — note pain levels, flare timing, and how symptoms affect your daily life
- Ask your GP to run blood tests like C-reactive protein (CRP) to check inflammation levels in the meantime
- Contact the Spondylitis Association in the UK for guidance on finding the right specialist

Finding the right rheumatologist can take persistence, but it makes an enormous difference. As one MySpondylitisTeam member put it — it's like finding the right fit with shoes or jeans, keep trying until you find the perfect fit.

You know your body better than anyone. Don't stop advocating for yourself. 💙

May 4

Related Questions

View All

Im scheduled for insertion of pain stimulator device. Anyone have this and success?

A MySpondylitisTeam Member asked a question 💭
Lancaster, PA
April 1, 2019

Electric stimulator

A MySpondylitisTeam Member asked a question 💭
Daytona Beach, FL
February 17, 2020

Bamboo Spine in Ankylosing Spondylitis
Spondylitis pain is invisible...
Explaining the Invisible Pain of Spondylitis
Continue with Facebook
Continue with Google
By joining, you accept our Terms of Use, and acknowledge our collection, sharing, and use of your data in accordance with our Health Data and Privacy policies.
Already a member? Log In