What kind of doctor to see for possible Ankylosing Spondylitis

[sunflower]

I have been having horrible pain in my hands for the last couple of months. I mean, they hurt so bad they creak. It is a little better when I have been up for a while, so I can type. :kello:

(skip to the bottom for my questions if you don't want to read my long story )

It all started when I thought about going out and working in the garden. I had it in my head that the next day I would go out and rake and stuff. Even though that hurts my back really bad - I wanted to. I miss gardening!

I woke up and my hands felt like I HAD been gardening! My thumbs were so sore that I couldn't use them, and my fingers creaked (literally) when I made a fist. Needless to say I didn't garden that day.

When it went on for more than a week, I went in to the doctor. He yelled at me that I must not be keeping my diabetes under control. He did my A1C (which was normal) and I asked for a rheumatoid factor and sed rate (normal).

Last week I had a pre-employment physical. The nurse said she has CD and has the arthritis that goes with it. She takes Humira. That got me thinking...

So - armed with the knowledge that is WASN'T AS, I started searching out symptoms. Nothing fit. Curious, I looked up Ankylosing Spondylitis and guess what? Symptoms I had been blaming on working in an office are word for word symptoms of AS.

My back hurts - way down by my tailbone, not where it usually hurts for most people with low back pain. It is worse when I sit a long time, and almost intolerable when I stand for long periods of time. Dancing helps. I also have horrible plantar fascitis and ankle pain.

Now I am thoroughly upset with myself because I have another disease to worry about. What doctor do I see for this?

Also, of those of you who have this, do you have hand pain??
I can't find anything except RA that would explain that.

:runaway:

 

[glum chump]

Hi Sunflower:

I'm sorry to hear that you're experiencing such painful symptoms.

Yes, I get hand pain---it is most excruciating in my wrists, my fingers and joints hurt as well, particularly in the winter. Some days it feels like I can't get my fingers to straighten themselves out.

My partner has AS---located mostly in the lower back, hips (extending to the pelvis area), and along the back of the legs to the feet. Not all those areas are in pain at one time, necessarily. My partner was referred to a rheumatologist and takes muscle relaxants (occasionally), Celebrex (a drug that might not work for you as it's an NSAID), and pain killers---will be starting on Remicade (also a biologic, like Humira) next month.

I get pain in my lower back/tailbone area and is caused by osteopenia, likely from long term use of prednisone. I take calcium supplements.

Maybe you could get a referral to a rheumatologist?

 

[Mary]

I have pain all over like that too. I have had all the tests and its come down to possible Fibromyalgia.

 

[sunflower]

I will do some more reading about osteopenia. I have a lot of prednisone side effects. This may just be another.

I forgot to mention that I was diagnosed with Fibro several years ago. Nothing I have read about Fibro matches my symptoms so very much - but with that disease, who knows. I was told by the Rheumy that diagnosed me that most people with chronic diseases have it in some form or another. Our bodies are in so much pain, that we become sensitive to pain.

I currently take muscle relaxers at night for my fibro. I was taking Ultram and it did help with my muscle aches. However, I thought I was getting a flair because my digestive system stopped working and I couldn't sleep for days and days except during the day. I read a thread on here that constipation and insomnia can be side effects of the Ultram. I didn't take it last night and already I am better.

I have Crohn's colitis and am one of the lucky rare ones that has so much scarring that when I flair, my digestive system tends to shut down. I had to see 4 doctors before one believed me. He said it was rare, but not unheard of. The others said it was impossible to have constipation with Crohn's. We all know nothing is impossible!

Back to the subject - I have not seen a Rheumy in years. Maybe it is time.

 

[Astra]

Hi Bev

sorry can't help you, but hoping you're ok? I have joint pain in my knees, that's bad enough! It must be terrible in your hands too, cos I'm a gardener too!
take care
xxx

 

[aneimn]

Al

Was diagnosed with AS at age 45. Symptom was terrible back pain extending to my neck. X ray showed total calcification of my spine. Was treated successfully with anti inflammatories for over 25 years which caused a flare up of Crohns which was just defintiively diagnosed.

You are lucky there are now better choices to treat the AS if you have good insurance as the drugs really are expensive.

 

[Crohn's 35]

Welcome aneimn to the forum. Sorry you have been diagnosed with Crohn's, I know it is overwhelming at first but research and knowledge of this disease helps along the way and lots of people here to help you. It would be a good idea for you to post your story on the YOUR STORY thread so everyone can greet you and welcome you on the forum. Glad you found us, hope you stay and learn. Great people here!

 

[sunflower]

Hi aniemm. Sorry you ended up with Crohn's. And, welcome to the board!

We never know what our trigger will be. NSAIDS can be bad. I took some Alieve when it first came out on the market as OTC. It was wonderful! The first medicine I had taken that actually got rid of my headaches and other pains with no side effects! Gave myself a big old case of gastritis and almost landed me in the hospital. I didn't realize it was an NSAID, I thought it was like tylenol. Live and learn I guess. LOL!!

My pain is in my lower back, so maybe I am okay. Maybe it is just from sitting on my butt all day in an office. I have been doing it for years. My new job involves home visits, so I get to get out of the house more. It should be fun!

 

[Crohn's 35]

Hey Sunflower, not sure if you are aware but Aleve is very hard on the gut too. You are better off with NSAIDS than Alieve because the cox2 inhibitor protects alot more. My pharmacist/owner let us know that. My husband is on Celebrex and wanted off and she said stay with the NSaid but he has a stomach like iron!

 

[sunflower]

Yea, I don't take that anymore. It made me sick and I almost had to go in the hospital.

 

[GoJohnnyGo]

I have Ankylosing Spondylitis. It affects both sacroiliac joints and the C-5 and C-6 vertebrae in my neck. I have limited mobility at both locations as a result.

 

[pompeybird]

I have suffered with back pain for about 7 years (since having my youngest son) and it has got to the point where i can barely walk i walk very hunched over kind of like a robot and cant lift my head hardly or turn it

I have recently been diagnosed with ankylosis spondalitis and arthritis (along with osteoperosis and b12 deficancy) , it took a long time and so many tests to get to answers but it seems i have severe curves in my neck and spine which is causing the hunched walking and neck problems

I was on quite a lot of medication for the pain but have been taken off it all and it is now going to be tricky prescribe me anything because i have now been diagnosed with chrons so what they would normally treat the ank spon with i cant have as a lot of it is NSAID's which can affect the CD

As for pain in the hands and wrists i also get this but im not sure if thats down to arthritis (im still in the early days of diagnoses) but i also get the same pain in my knees

As for who you see , i have been referred to a rhumetologist which i assume is for the AS (like i say im still in early days of diagnoses) even though i have suffered with AS for what seems like 7 years

To have my AS diagnosed i had a lot of tests (lumber puncture , blood tests , scans ) but i think all that was to rule out other things as well

It was a second MRI scan that picked it up a few weeks back (although it wasnt rocket science you have only got to look at me to know something wasnt right lol)

As for treatment i honestly dont know what the next course of action will be as now theres CD thrown into the mix

You have my upmost sympathy with regards to another problem to deal with as im exactly the same and its hard to see a light at the end of the tunnel (im only 28)

I think the first thing is keep pushing with your GP to refer you for an MRI (although your GP sounds about as good as mine)

Huge hugs and i hope you get some answers xxxxx

 

[aneimn]

My AS has really burned itself out after many years. Was treated with NSAIDS(FELDENE) which was not good as I had undiagnosed Crohns. This resulted in hospitalization for blockages and major surgery. Finally my crohns is being treated - just started with entocort. If you have good insurance there are new treatments for AS which should be compatible with Crohns.

 

[sunflower]

Well, I guess I have just kept hoping that my back pain would go away! LOL!! It bothers me the most at odd times, like when I am washing dishes. Weird. Or, when I sit at my desk a long time and then try to stand up.

My foot pain started a couple of years ago, but we blamed that on my job. I no longer have the job, but I still have the pain! LOL!! Now my knees hurt. It is harder for me to stand up after I have been sitting that it has ever been before. I get up like my dad in his 80's and I am in my forties.

When I talked to my GP again about it, his answer was to xray my hand - it was normal. Now he is on sabbatical for a month. Great. Things are just not going well for me right now. Plus, I started a job where I get up and down a lot, and sit on the floor with children. My knees didn't hurt this bad when I applied, I swear!

 

[kammrm]

Did you ever find out if it was AS? I too have severe pain in my lower back when I am doing dishes, or carrying the laundry basket, etc.... My shoulder tingles, my neck hurts (all on the left hand side), and both wrist hurt ALOT. I have plantar fascitis as well but the prednisone helps that. I have researched AS but I hate going to the Dr. with a self diagnosis, let alone not know what Dr. to go to .

 

[Jennifer]

kammrm with that much joint pain (and if you wanted to find out if you had and needed to treat AS) you'll want to see a Rheumatologist (you may require a referral from your regular doctor). They can do gene testing for AS (I had it done and I don't have the gene so can't get it) and they also treat AS (usually with biologics).

Don't worry about going in and asking if you could have AS. That's pretty much what I did. I had a lot of pain and did some online searching of symptoms (not really a bad thing to do, just don't worry yourself into the ground) so when I went in and saw my Rheumy, I told him my symptoms and asked if I might have AS and if he could test for it. Luckily for me he already tested for it back when he was testing to see if I had RA (don't have that either). From my experience, my doctors are always willing to test for other illnesses/issues as long as the symptoms fit the criteria and if it doesn't fit the criteria they fully explain why I couldn't possibly have what I had suggested (that happens less often, I'm not a hypochondriac, my suggestions and concerns usually have merit).

 

[kammrm]

Thanks for replying.

I'm already on Cimzia, so you would think that would help but NOT!! Maybe not, it doesn't seem to be helping with the Crohns either right now.

I'll look for local rheumy here. Sometimes I feel like a hypochondriac and I am terrified they will think of me that way. But your right the only way I will know is to go. When you say they test for the gene does that mean that it runs in the family? No one in my family has it.

BTW I see you are familiar with methotrexate - any good? I'm becoming steroid dependent and will be going to a research hospital in January, I've heard that methotrexate or remicade works best.

 

[Jennifer]

Here's some info on the genetic side of things: http://ghr.nlm.nih.gov/condition/ankylosing-spondylitis

"A variation of the HLA-B gene called HLA-B27 increases the risk of developing ankylosing spondylitis. Although many people with ankylosing spondylitis have the HLA-B27 variation, most people with this version of the HLA-B gene never develop the disorder. It is not known how HLA-B27 increases the risk of developing ankylosing spondylitis.

Variations in several additional genes, including ERAP1, IL1A, and IL23R, have also been associated with ankylosing spondylitis. Although these genes play critical roles in the immune system, it is unclear how variations in these genes affect a person's risk of developing ankylosing spondylitis."

I'm sure Methotrexate is good for some people but unfortunately for me it didn't work out. I was taken off of it yesterday (need to update my signature).

 

[sunflower]

I realized I hadn't posted a follow up to this thread that I started.

Well, my GP would not refer me to a Rheumatologist, so I just learned to live with it for a while. The severity would come and go, as most inflammatory diseases will.

Then I started feeling really awful in my gut. I was referred to a OB/GYN that wanted to do a hysterectomy. I decided that I wanted to see my Gastro before I went in for surgery - just in case. Turned out I was having a terrible flare of CD, just not having the big D. The Gastro said that I was so sick I may not have survived the surgery. Wow.

So, as we attempted to get my CD under control, he asked me about other symptoms I have. (I love DO's!) I mentioned that my lower back hurts A LOT, stiff neck, hands, feet, etc. He asked me to show him exactly where my back hurts and I pointed to the spots. He informed me that what I was pointing to was the SI joint, not my hips or back. Great. So all these years I was saying hips or lower back, I was describing the wrong thing.

So, needless to say, he referred me to a Rheumatologist. Now to make a long story short, the second one I saw was quite put out because I had not been diagnosed yet. She said it is NOT uncommon for people to have Spondylitis and CD and she can't understand why no one had diagnosed me yet.

I am doing much better. My Gastro started me on Humira, and the Rheumy upped the dose to help me more with my stiffness. We added Sulfasalazine later for my hands and feet. I still have pain at times, but it has made a huge difference in the quality of life. At one point before Humira, I was considering giving up driving because I couldn't turn my head far enough. Now, I can turn my head!

I hope this helps someone out there!! Thank you all for your help, replies and support. I appreciate this forum very much!

 

[mindiemonster]

Yeah, I have AS. My rheumatologist tested me and found out that I'm HLA-B27 positive, which predisposes me to all sorts of problems. That said, they say they can't do anything for me that my GI isn't doing already since I can't take NSAIDS.

 

[afidz]

Glad you finally got a diagnosis sunflower! I haven't been able to afford a rheumy yet, haven't been able to work for 2.5 years. I was seeing an ortho (he has since given up on helping me) and he said that I probably have enteropathic arthritis because thats what people with Crohn's disease get. I then did a lot of my own research, and yes, a lot of people with Crohn's do get that type of arthritis, I match all of the symptoms to a tee. Also, I read that its common for more than one family member to have it, and my only biological sibling has the exact same symptoms as I do and he DOES carry the gene. I don't know if I carry the gene or not, when I go to a rheumy finally they will be able to tell me if I do or not, but I am pretty much assuming at this point that I do because of my medical history.
From what I read though, its really hard to diagnose AS, for the most part, in the beginning, doctors can pretty much only assume you have it because it doesn't show up in any imaging until there is significant damage to the pelvic area and spine, takes about 10 years. Has your doctor said anything similar?

 

[my little penguin]

Afidz

Arthritis associated with crohn's falls under Spondyloarthritis(SpA)

This article is for junveile version but they mirror adults SpA for the most part
http://www.medscape.com/viewarticle/543896_2

Most SpA starts in the periphial joints without the spine and later moves onto the spine (AS) within 5-10 years of dx of SpA.

Most Ibd arthritis runs concurrently with Ibd activity except for a small percentage ( DS fits in there ) that runs independently in more than 5 joints.

Most drugs to treat AS /SpA are the same as Ibd drugs .

The Rheumo told us he is watching DS spine closely.

We were told the best thing best side drugs is to exercise and stretch daily - biking swimming etc ...
Hope you get into a Rheumo soon