Spondylitis

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7 medium

Taboo: Endgame expectations

Taboo: Endgame expectations

As this disease progresses (deteriorated you) and family & friends don't understand you and therefore dont help you or help you less and less, and doctors decrease or stop treating you due to political cost effectiveness mandates...
Where do you see yourself? How do you see yourself physically? How do you see yourself coping? Are these your final days? What kinds of choices will you make?

7 mini
A MySpondylitisTeam Member said:

Wow, That was awesome @A MySpondylitisTeam Member! Thank you!!!

posted about 2 hours ago
5 medium

Do we need a sponsorship program?

Do we need a sponsorship program?

I am an overly emotional person, just the way I’m built. I often wonder that I’m not doing enough to support everyone Is there a need for a sponsorship program? It’s just a thought. To help building a ramp, giving a physical hug or what is needed to someone I need. Does this support already exist and I don’t know of it. Most of the time here we just need to vent or get suggestions to our problems. I see some that I think need more contact and it bothers me, as I should be doing… read more

2 mini
A MySpondylitisTeam Member said:

@A MySpondylitisTeam Member
Some random thoughts and ideas for you on finding resources and creating a support group...
I Googled "State of Virginia,… read more

posted about 22 hours ago
1 medium

Does anyone on here have Arachnoiditis?

Does anyone on here have Arachnoiditis?

Does anyone on here have Arachnoiditis, I was diagnosed with it 16 years ago, and I am in torment. I am now on 647mcg. Intrathecal Fentanyl pump therapy, 2 oxycontin, 2 cymbalta, 2 lyrica, and 2 diclofenac, and it only shaves the edge off the pain at best.

Does anyone have any suggestions that might help?

I am trying acupuncture next as I hear it sometimes helps.

Thanks I advance,
Rick Lillard

8 mini
A MySpondylitisTeam Member said:

Rick, it sounds like your body has built up a resistance to the meds. I do acupuncture every week and it helps a lot. I also bought the cups you put on… read more

posted about 12 hours ago
1 medium

I’m about to see a Rheumatologist for the first time in 2 days - what questions should I ask?

I’m about to see a Rheumatologist for the first time in 2 days - what questions should I ask?

Hi all, I’m hoping you can help me with the wealth of experience on the site
Diagnosed with Spondylolisthesis in 2015 (age 39)
Spinal fusion and decompression L4 - S1 in January 2017
Current situation
C2 - C7 disc degeneration/spondylitis with three bulging discs
T10 - 11 bulging disc
L3 - L4 bulging disc
S1 - bulging disc
Pain head to toe. Numbness and tingling in arms and legs
Legs keep giving way and spasms

I really don’… read more

8 mini
A MySpondylitisTeam Member said:

Fire your doctor, he is incompetent at best. You need a good doctor. Read these sights and you’ll learn a lot. Once they start you on spinal surgeries,… read more

posted about 13 hours ago
9 medium

I have As and my symptoms seem to be getting worse my question is does anyone else experience worsening memory as time goes on?

I have As and my symptoms seem to be getting worse my question is does anyone else experience worsening memory as time goes on?

Also maybe finding it harder to come across words?

2 mini
A MySpondylitisTeam Member said:

I'm having great difficulty with spelling and pronouncing words
Sometimes I have to sound them out loud.and.i get mlm so frustrated. My husband tends… read more

posted about 20 hours ago
6 medium

Has anyone out there changed they way you eat to help you feel better???

Has anyone out there changed they way you eat to help you feel better???

Being vegan, vegetarian, no dairy, gluten free does it help???

4 mini
A MySpondylitisTeam Member said:

A few years back I was on an elimination diet. I started out on a very restricted menu. I could only eat a few things, then gradually one food at a time… read more

posted 2 days ago
2 medium

Has anyone else developed an allergic rash with biologic meds?

Has anyone else developed an allergic rash with biologic meds?

I had to go off of Humira after 7 months of use because I suddenly developed hives. I have been on Remicade for 6 months and have started to get red bumps mostly on my face that are very itchy. I don't want to go off of my medication again, but being itchy every day is unpleasant. My P.A. at rhuemetologist office seems clueless about what to do.

4 mini
A MySpondylitisTeam Member said:

Zyrtec covers a wider spectrum of allergies than Claritan. It has helped me more than any other allergy medicine.
Also, do you have any followup contact… read more

posted 2 days ago
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