Ankylosing spondylitis – signs, symptoms and what it is really like to have AS!

ankylosing spondylitis
ankylosing spondylitis

As many of you know by now May is Arthritis Awareness Month. As part of our support for the month we have decided to highlight a few different arthritic conditions. For those who are interested we have looked at Rheumatoid Arthritis, Lupus and Fibromyalgia in some detail in previous blog posts on PatientTalk.Org.

Today we wish to focus on Ankylosing spondylitis. Primarily it is a spinal condition though it can also affect other parts of the body. There are two objectives to this blog post. Firstly to raise awareness of Ankylosing spondylitis among our readership and the wider community. Secondly to give an opportunity for people with AS to share their experiences and story. Hopefully it will provide useful information and support for those who have just been diagnosed with the condition .

Normally the symptoms develop over a period of time (in fact, several months is common). Typically they include:-

a) Back pain. Interestingly rest seems not to help here but exercise does.
b) Fatigue
c) Pain and swelling often in the arms and legs.

The inflammation can cause the spine to fuse which is referred to as ankylosis. Causes are as yet unconfirmed but it is believed to have a genetic link. Typically in the Uk around 1 in 300 people have been diagnosed with the condition. Interestly around three quarters of those affected are female. And most cases seem to start when the person with AS is in their twenties.

Treatments include

a) Pain Management
b) Exercise – check out our previous blog post on exercise for people in pain!
c) Physiotherapy.

In severe cases of AS surgery is used to help with the fusion of the spine.

So over to you. We would love to hear the voices of people in the Ankylosing spondylitis community. It would be great if you could use the comments box below to share your story. Please feel free to include anything you think may be of interest but you may wish to consider the following questions?

1) At what age did your first symptoms appear?
2) What were those symptoms?
3) How have the symptoms progressed over time?
4) How supportive have you family and friends been?
5) What treatments have you used for AS and how effective have they been?
6) Is there one piece of advice you would give to somebody who has just been diagnosed with Ankylosing spondylitis?

If you can suggest any good blogs, groups and sources of info that would be great as well.

Many thanks in advance for your help!

3 comments
BeauBalderi
BeauBalderi

1) At what age did your first symptoms appear?

I was diagnosed with AS and Rheumatoid athuritis at the age of 18 it has been a very painful ordeal.

2) What were those symptoms?

Pain and swelling in the legs and back. One morning i woke up and couldnt even get out of bed.

3) How have the symptoms progressed over time?

I am still in pain every day but cause im used to it i don't feel it much execpt for when i do a lot of walking and standing for long periods of time.

4) How supportive have you family and friends been?

I have been supported by everyone around which is great.

5) What treatments have you used for AS and how effective have they been?

Physo and medication (anti-inflammatories).. the medication works a treat.

6) Is there one piece of advice you would give to somebody who has just been diagnosed with Ankylosing spondylitis?

Take it easy dont push your self.

lizabethe517
lizabethe517

I'll second the recommendations of a good, firm mattress (mine is a tempurpedic knock off) and a rheumatologist (a good one that will listen). My AS started when I was 14 with lower back pain (and knee pain, oddly enough). I was always very active, but the pain put a serious damper on that. I also have OA/DDD  so sometimes it's difficult to tell which condition is causing which symptoms (doesn't really matter, I suppose since the treatment is the same). I'm now 36 and this condition has given me all sorts of fun gifts. It seems like once something goes haywire with the immune system, you hit the auto-immune lottery. Allergies, joint and muscle pain, sciatica, plantar fasciitis, fatigue (can't stress that one enough). I'm acutely aware of all of my moveable joints because they all hurt. Even though it's painful to keep moving, it's essential to do so (as much as possible). It's often a thin line between being active enough and overdoing it. I have tried every nsaid I can think of, many pain medications, neurontin (for the leg twitches), muscle relaxers, herbal remedies, diet changes...you name it. Everything short of biologics and surgery. It took me 20 years to get my diagnosis because it just isn't that well-known. I was happy to get the diagnosis though. After so many years, I finally knew what I'd been fighting. It tied together all of my symptoms, many of which I thought were unrelated. I don't have a cure, but I have answers. I suppose my parting advice would be to take it day by day, keep a sense of humor, know that you are not alone, remember that there's always hope, and never, ever stop fighting.

sihad
sihad

A good bed and materves. Is a good start. Memory foam firm. Not to hard. Or to soft. So u sink. 1pillow and try and sleep as strat as posible. And try and keep moveing. I now that can seem like it makes it worse. But in the long run. It deferentley helps. But u will deferlentley need to see a rumatrolagest.