Ankylosing spondylitis anyone? drop some tips and wisdom for your girl here :(

Ankylosing spondylitis anyone? drop some tips and wisdom for your girl here :(

Hi! I am a 19yo female and began suffering from moderate back pain about 4 years ago. The pain continued getting worse and worse and the only thing my family doctor would do was get an x ray which showed nothing and putting me on some anti-inflammatories which also did nothing. I am pretty active and regularly work out. I developed severe shin splints about 4 years ago and to this day, they just get worse despite the fact that I stay away… read more

A myRAteam Member said:

You definitely need a good rheumatologist. I've had RA longer than you've been alive. I know him well. It's a crazy, unpredictable disease and the list of things that it does to your body is long. RA also loves company, many people have more than one auto immune disease, lupus,fibro,sojourns disease. You may have one or all of them. You need a rheumatologist who will listen to all your complaints & investigate & send you for tests. A healthy diet is good for your overall health but doesn't really help RA. I've tried all sorts of diets, herbal tea,cherry juice,creams,CBD oil. The only thing that's really helped is biologics. Biologics prevent the symptoms from happening, everything treats the symptoms after they already effect you. RA causes problems with your eyes,hearing, thyroid, constipation,extreme fatigue, insomnia,joint pain & swelling, low grade fever & flu like symptoms. Keep a diary of all the weird stuff your body is doing. Give your rheumatologist a list. Walking & light exercise is good but don't overdo it. Be careful about lifting stuff. Moderation in everything you do will help. Try using a heating pad on your back & soaking in a tub of warm water,a Jacuzzi if you can find a YMCA or some place that has one. I'm currently suffering from a fracture in my back due to severe osteoporosis. Not being able to sleep really sucks! Hope you get some answers soon & get some relief from the pain.

posted 3 months ago
A myRAteam Member said:

Jennette is so right. I've had RA a very long time too and I suffer from lupus, fibro, Sjogren's, raynaud's, the list goes on and on. I've tried diet, supplements, cbd etc. Biologic's are the only thing that has really helped me. I still suffer quite a bit but I couldn't imagine my life without the biologic. You might have to try several in order to find the right fit and it can be frustrating but it's just a part of our RA world. Hoping you find some relief soon.

posted 3 months ago
A myRAteam Member said:

First, i used to have muscle aches around my trap muscles and all around my left shoulder blade. It used to ache so much and feel so tight that I just literally wanted to cut open my back and rip out all my muscles and ligaments. Now that pain has gotten even more severe plus distinct pain in my actual spinal cord.
I can feel the upper spine aching so much. Like a strong dull ache.
I always feel like i have to crack my upper back but when I do, I get 3 seconds of relief but then the pain gets worse and it's an endless cycle.
Sometimes it spread all the way up to the sides and back of my neck. It's the worst when I try to sleep.
Every position kills so much and then I wake up feeling like the tin man in the wizard of oz!
It causes the worst headaches ever.
I'm so sleep deprived because I probabaly sleep like 3 hours max every night.
And because I'm so tired and in pain all day, it's so difficult to do anything.
I have to force myself to actually move around and go to the gym and do school work.
It's such a struggle and I'm only at the early stages 😔

posted 3 months ago
A myRAteam Member said:

Thank you all! I feel like such a baby complaining about it when I'm still so young but theres so many people out there who have it a million times worse.
I really hope you all are able to find some sort of comfort as well

posted 3 months ago
A myRAteam Member said:

Ask ur rheumatologist to test ur blood for the SSa and SSb antibodies to see if u have Sjorgrens Syndrome (dry eyes, constpation, extreme fatigue, and neck joint pains indicate SS). Also have him run blood for HLA-B27 antibody, especially if your family has ankylosing spondylitis in its history. Also anti CCP to rule in or out RA.

posted 3 months ago
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