Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group New:STill waiting for diagnosis, emotionally tired

Hi My name is Jess, I am 41, and it has been a VERY long 13 months. I know many of you have struggled for years and I don't know how you did it. Last summer in June, everything was fine, parents came up to celebrate my 40th, dinner, wine feeling good, training for a tri: running, swimming, biking, hiking with my husbande, usual active livestyle. Then out of the blue in mid JUly, I developed Pudendal Neuralgia ( a nerve condition of the pelvis) where there is burning!
Later in Novemebr was when everything went downhill and I have had symptoms ever since, that have all been treated seperately with no one putting anything together. I am on 3 drugs for the neuralgia,, and I developed NOV_FEB: SI inflammation, instability, lumbar lordosis, then each month to follow, back pain, leg pain, achilles tendonitis 2xs, ankle tendonitis, hip bursitis, and this month costochondritis that hurt ribs and chest to the back( went to ER) buttock pain for a month now, leg pain for 9 weeks now, and foot pain. This is horrible. My GP doesnt know what it is . I have tested positive for the HLA gene, and am seeing a rheumy ( 2nd visit on Sept 15) I have severe morning stiffness.. it goes on. I am not feeling very hopeful now, as I am so tired of this. My GP doesnt know so that is why i am going to the rheum. I cant go in there 3 weeks from now without a diagnosis or a treatment plan, cuz what I am doing isnt working! I just don't know what to do anymore. The pain is very difficult. I have asked for Soma as I had been taking valium for the neuralgia for some time, and I just asked for a medrol dose pack to see if it can help get rid of the leg or butto pain. Any thoughts or ideas? I just can't go months and years of this with no diagnosis... and I won't leave the office of the rheum, until there is a treatment or direction, I will not hear see you in another 6 weeks, and then you suffer. They have ruled out Lupus, mixed connective tissue, sgjorens, sclero.....
Thank you. jess . This is just so draining.

Hello Jess welcome to KA.
IM sorry your going through so much pain and not yet having a diagnosis. Hopefully you will have more luck with the Rheumy and he will do tests blood,mri, xrays and get to the bottom of the problem then you will be able to get proper treatment.Once you have a proper diagnosis theres lots of different treatments that will help you.
Best wishes
Kevin

Hi, I'm new here too. Doesn't it suck having this pain and not knowing what it is!? I'm 20 and first started having back pain when I was 13. At first I saw a GP and had a bit of physio - they thought i must have strained it. I continued having pain and my neck was also painful and morning stiffness etc. I went to the GP again at about 17 and they did the blood tests which came back positive for HLA B27. They told me I probably had ankylosing spondylitis , and prescribed me some voltaren and said that it was best treated with stretching and exercise. Probably a 6 months later I asked the GP for a referral to a rheumatologist, mainly because I felt I wanted more info. Anyway, so I saw the Rheumatologist who ordered more bloods and an MRI on my sacroiliac joints. The MRI came back clear and the bloods came back negative for HLA-B27 this time. The rheumy then said I don't have AS, bloods did come back with some other results he found interesting however leading him to believe I have some type of autoimmune disorder. I've seen him several times, and have tried about three different courses of anti inflammotories which didn't help. He then put me on plaquinil which I stopped after about 4 months as i didnt notice it was helping and it upset my stomach. I've just finished on a short course of Prednisone but it hasn't made any difference! I'll have to talk to the Rheumatologist and see what he thinks to do next. Hopefully he'll work out whats wrong with me eventually, last time said some of bloods were more what he was looking for in the beginning, maybe AS afterall.. I feel as though I'm crazy sometimes!
Anyway I feel as though I am ranting, but I know how you feel! Keep positive and good luck with finding a diagnosis and pain relief!
One thing I must mention is that I do feel better after exercise, so don't give up on your active lifestyle!

Hello brendy,
Just wanted to welcome you to KA. Hope you get some help from every one here.
Kevin

Hi Jess,
Welcome to the group, but so sorry to hear that you are feeling so tired and sore. Wish I could make it better for you soon! We are all struggling and trying keep our heads up. Not easy. I got ill about three years ago - lost 19.3 pounds within two months - it was pure hell. Somehow things do get better with time, especially if you can get medicine that work for you.
Stay with us, say how you feel and what you experience. There are many very knowledgable people here who will give you good advice.
Take care of yourself.

Hi Brendy,
Welcome to you too. So sad that you had to suffer from so young... Hope that the rheumy will give you a diagnosis and medicine that will help.
Keep up with you exercises, but don't overdo! Too much can contribute to the inflammation, I had that experience.
Take care and keep hoping for the perfect cure!

Hey Jess,

Sorry for your pain. Many of us here know exactly the kind of confusion and frustration you're feeling.

About 15 years ago I was running in Muir Woods near San Francisco (where I lived at the time) and I misjudged a my landing and touched down with a locked knee running very fast, downhill, in the woods. I thought I'd dislocated my hip. That incident triggered almost two years of extreme pain, related injuries exactly as you've described, and misdiagnosis after misdiagnosis. I went to chiropractors, GP's, acupuncturists, and orthopedic surgeons. After the ortho recommend he "open me up and take a look around", I decided I'd had it with doctors.

Almost 12 years later I was finally diagnosed with AS. What a relief. At least when you know who the enemy is you can fight him, you know?

This community has been a blessing for me. I've learned how to control my pain with diet and very limited amounts of pills.

My big regret is that I didn't keep pushing for a diagnosis 15 years ago. I suppose everything happens for a reason, and living for 12 years in baffling pain must have a deeper meaning (anyone have any ideas?). I know it's made me more understanding of my fellow human beings. But I still wish I'd pushed for a diagnosis.

So my advice to you is to keep looking for a diagnosis. Come back to this forum when you get confused as there are MANY experts here much smarter and more experienced than me.

Good luck,

Hi Jess, nice to meet you and welcome here. I hope you feel better soon. Keep hoping. Keep reading about what has helped people here, keep posting!
Best wishes,
Jan

You poor thing! You are not alone! Pls hear me saying that! We have all gone through this! This is not a common issue and it takes a huge amount of will power to kick through and find help! You just TRY and find happiness in anything you can and hold it in your heart till you find a DR that is willing to help you! You will find someone! I promise!!! There is hope out there! If the medrol doesn't help then try straight prednisone! My mom and I both have this monster of a disease and at my moms onset she was given medrol but it didn't help as much as prednisone! I get depo-medrol injections into 5 muscle groups and that helps! You can even get lidocaine injections in those problem areas! If you go into your drs educated but willing to listen they will help you! Stay strong and I can say that this site is full of help, care, and understanding! To me the most helpful part of this was finding out I wasn't living in a hell alone! Keep coming here to vent until you find help! Keep us updated too! We all really do care! I'm 32 and at times feel like I can't do this! But there comes a time that I have a good day as I know it now and I thrive on that till my next one! Good luck in your search!

Welcome Jess. I am glad you are here. I am sorry you need to be. We have all been through or are going through the same things. It does get old.

It took me 10 years to get diagnosis (after being diagnosed with JRA as a child). That 10 years got me a Lupus diagnosis and in the next 10 years the AS, Fibro, all of the other diagnoses came along. It is just hard.

I know it feels necessary to know what you are dealing with but I had a dr. to tell me early on that it didn't matter the name they tagged it with. He said "You already have it; whatever it is. Naming it isn't going to change the treatment. All we do anyway is treat symptomns." Just something to think about. Now I just tell them when they say that "this or that" is acting up to "Call it what you want. Just make me feel better."

I hope you get some relief soon. The Pain Management Doctor helped me some. PT helps me more than anything but not just any PT. They are like drs...good and bad. I finally found out what was causing my hip, bursa, leg pain. Everything is from my back where the spine is loose and goes where it wants and pinches nerves. I wear an appliance all of the time now to hold my spine in place. Just hang in. It takes so much time to get this all worked out. Maybe you said and I missed it but have you had MRI's? My dr. insists on long acting and short acting pain meds. Ice packs help a lot. I have Lidocaine patches for "those times". I think we all have costochrondritis. It is very painful. It is very necessary to keep doing your deep breathing exercises to keep your chest open.
The foot pain really gets me a lot. My PT has me to sleep with a pillow at the foot of the bed to keep my feet against and keep them straight. I think it helps. It is just an easier thing than wearing the boots.

Come back often. There are so many people here who are anxious to help and encourage. I don't know what I would do without this AS family. Welcome to it.

Blessings.
Possi