Spondylitis

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2 medium

Does anyone have difficulty wearing clothes?

My first question on getting out of bed is "what shall I wear that doesnt affect my back. Sounds stupid I know, but its a major problem for me? I like to be smart but cannot stick the pain of anything around my waist. I have to cut through the waist bands of skirts, trousers etc. Even wearing tights is unbearable.
Reading this back I know it sounds ridiculous, but it is true.

posted 4 months ago
A MySpondylitisTeam Member said:

Brilliant Kathryn M, you are a girl after my own heart, I agree with everything you said about clothes and its great when you can have a good laugh at… read more

posted 1 day ago
9 medium

Has a "professional" eg, Dr. surgeon, specialist ever doubted your pain? Looked at yu like you are crazy or a drug seeker?

I started symptoms when I was 16, chiropractors and more chiropractors until my early 30's and I quit. Diagnosed at 43 :'( Two spinal fusion surgeries, 70% curve in my l 4, l 5 and because I walked around with a fractured screw for over a year after my first surgery that caused 6 discs to rupture which were caged in my second surgery along with rods, bigger now :/ pins screws etc etc etc, instead… read more

posted about 1 year ago
A MySpondylitisTeam Member said:

Sorry to read you had to go through such a scary thing before things got better. But thank Goodness it did if now your with the right doctors and right… read more

posted 2 days ago
9 medium

Weary about biologics

Hi there,

40 year old male diagnosed this year but likely have had it for 20 years.

Xrays show fusion in T3 (among other areas). I have pain daily and stiffness. Doctors categorize as severe. Inflammation markers are high.

Treatments tried:

1- multiple NSAIDS which I know are not sustainable and also didn’t sit well with stomach
2- regular gym, massage, stretching - this helps
3- no starch diet for 3 months (not sure yet if this is helping)

Doctors have all recommended I go straight to… read more

posted 19 days ago
A MySpondylitisTeam Member said:

Hi Dave, I was diagnosed finally about 5-6 years ago by a specialist with all the test positive. I've been on Humira ever since, I understand your… read more

posted 4 days ago
9 medium

When is it time to try biologics?

I was diagnosed with non-radiographic axSpa a few months ago. I’ve tried several NSAIDs, PT over the years, exercise, prednisone, injections etc., all of which have helped some, but I am still having pain.
The rheumatologist wants me to try 4 weeks of prednisone again, along with Tramadol, to see if that will help. When I mentioned concerns about progression, he said that I shouldn’t worry about it - but that Enbrel might be an option if I would like to try it.
I appreciate all… read more

edited, originally posted 2 months ago
A MySpondylitisTeam Member said:

Prednisone should only be a temporary. Fix. I have the same diagnosis with severe pain. I have been through back injections until my adrenals were… read more

posted 11 days ago
6 medium

I am starting simponi does anyone have that treatment

posted about 2 months ago
A MySpondylitisTeam Member said:

yes, I am on Simponi Golimumab, its fantastic, I have been on it for about four years, and I have felt much much better since starting it.

posted about 1 month ago
9 medium

Female issues/Pudendal Neuralgia?

Anyone have intermittent genital nerve pain/tingling? My pelvic PT says it may be pudendal neuralgia from spinal muscle spasms pressing on a nerve. She also said the pelvic area tightens when the SI joints need help. But my rheumatologist says the genital tingiling is from fibromyalgia.

posted about 2 months ago
A MySpondylitisTeam Member said:

I also have fibromyalgia and have this! I wouldnt say mine is painful, but uncomfortable...like being very close to climax then not actually climaxing… read more

posted about 1 month ago
0 medium

I have been calling more often over the last few months. I avoid the ER because I tend to be treated like an drug addict. Any one tx so?

I have a spinal fusion, spinal cord stimulator, and I am in pain management program but they do not have urgent appoints and will not adjust meds between appointments so they tell be to go to the ER but the ER staff treat me like an addict. I currently have a hugh bruise going across my back and hip from a fall 2 days ago and am in terrible pain. Any one else running into these… read more

posted about 1 year ago
A MySpondylitisTeam Member said:

Norma, my CBD oil was max strenght, 200 mgs i believe. U HAVE to get the strongest u can find, then place the drops under your tongue for as long as u… read more

posted about 2 months ago
5 medium

Medical marijuana, cbd use

I am looking for alternative treatments for my AS. Will be on pure Medicare this next year and I’m very doubtful that I will be able to afford my humira. If you are using or have tried using either the full product or the cbd (without thc) I would love the feed back. Also if you know a source for good cbd, product descriptions are sketchy online. ( I can buy from 9 to 120 and they all read the same) thank you!

posted about 1 year ago
A MySpondylitisTeam Member said:

I moved to Florida and can say for sure humidity is a factor. Pain has increased and that feeling of a weight holding you back is worse. I don’t have my… read more

posted 2 months ago
4 medium

Could i have spondylitus?

Trapped a nerve in my neck which parralized me for a bit by just falling back playing football, once or twice a year for the first few years i'd have really bad neck pain and also was told at hospital that i had 2 ackle bones in each foot ,but they wouldnt do anything unless i was older and gave me problem,this may not be anything to do with my neck and back pain but needed to say as everything is linked. I then over the next 18 years had a PC repair shop and constantly bending over them… read more

posted 3 months ago
A MySpondylitisTeam Member said:

This is why cold and flu remedies for the most part disappeared to the pharmacy counters end. Always best to check for any duplications or… read more

posted 2 months ago
5 medium

Has anyone tried Simponi Aria yet?

I am waiting on the approval process for this. I've researched it so much and my doctor and I believe it is the right way for me to go due to anxiety with the Humira pen. I have been on Celebrex for the past year and I am in pain everyday and so fatigued. If anyone knows more about the Simponi Aria I would love to know your thoughts.

posted 11 months ago
A MySpondylitisTeam Member said:

I was put on Simponi monthly injection pen, it didn’t work so I was put on Humira 2 weekly pen injection, I am now virtually pain free and can walk… read more

posted 3 months ago
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