Spondylitis Association of America
Topic Options
#204900 - 04/16/11 10:19 PM sciatic pain and uveitis flare up.
emmlura Offline
Registered Visitor

Registered: 04/13/11
Posts: 9
Loc: New Orleans, LA
Hello all! I am new here so I'd like to introduce myself. My name is Emily. I'm 23 years old and I've been battling problems with uveitis sincle I was 18. I never really paid much attention to it until a little over two years ago when I had a miscarriage. I found out after that I have a clotting disorder (thrombophilia). Shortly after that I got uveitis again and it was very aggressive. My eye doctor couldn't get it under control so she sent me to a specialist. It was so painful. Then it got so bad that the dialating drops wouldn't work. My eye was so inflamed that my pupil was stuck in one position. I was still in pain from the surgery (I was four and a half months pregnant when I miscarried) and was dealing with this awful pain from my eye. My opthamologist suggested I get bloodwork done for the possibility of the HLA B27 marker. It was positive. She told me to tell my primary doctor about the results since I have had problems with my knees and ankles in the past. At this time my obgyn was my primary and she referred me to a rheumatologist. Well, a whole lot of life has happened since and I haven't had a chance (or the money) to go see one.

I started dancing right after I got the uveitis under control. I was a bit out of sorts with the loss of my son and the news of the clotting disorder. Well since I've been dancing the pain in my back started and every other pain got worse. I kept getting uveitis, my sight kept getting worse, I started to get sciatica. I felt like I was falling apart. None of this has stopped and now I'm in so much pain that I don't have much motivation to get out of bed. I can't eat. I can't sleep. I can't get comfortable. And the worst thing was that it hurt too bad to dance and when I could dance or when I had to because I didn't have any money left for food it would hurt sooo bad that I'd be shaking and crying in pain. Well I have my first appointment with my rheumatologist on Thursday. I'm so excited! I'm ready to start feeling better. I guess I'm just wondering what to expect for the first appointment. Am I foolish to expect immediate relief?

Also has anyone ever encountered people that didn't understand your pain so they didn't believe you? I'm kind of running into this problem a lot.

And what's up with this brain fog?! It's no fun at all. I feel blank.

Oh anyway, at the moment I've got uveitis and sciatica, intense back pain. Rib and sternum pain when I breathe, pain in right knee, left ankle and both elbows. All I'm doing for pain management is heat packs, and baths or showers. I've also found that marijuana helps with the pain (which I usually get an earful from my doctors about that haha) Has anyone else tried marijuana for pain management? If so how did it work for you?

Anyway thanks for reading. Sorry it's so long, it's nice to have a place where people understand what you are going through. smile

Top
#204913 - 04/17/11 06:29 AM Re: sciatic pain and uveitis flare up. [Re: emmlura]
cemc Offline
Registered Visitor

Registered: 01/15/10
Posts: 2894
Loc: UK
Hi and welcome. I am sure other people with make some comments before long.

Glad you have finally got a rheumie appointment. Not sure if you can realistically expect immediate relief, but you may get a few more tests done (ESR and CRP blood tests to check for inflammation), and probably some imaging particularly of the Sacroiliac joints, which is where they need to see evidence of inflammation for a full diagnosis of AS. They will probably also want to start you on some kind of antiinflammatory drugs - usually NSAIDs to start with. Those are non-steroidal anti-inflammatory drugs - common ones are ibuprofen, naproxen, etc, but there are actually loads of different ones. There are more aggressive treatments available (like anti-tnf drugs) and it depends a bit on your rheumie how and when they decide to use these. Also depends on your insurance, or if you aren't in the US, on your health service protocols for using them (most places like you to try NSAIDs first).

Have you googled any general patient information about AS? www.nass.co.uk has some quite good stuff, but most support organisations for AS will have general information including the recommended exercise/stretching programmes. They are really important to maintain a full range of movement and something you can do yourself.
_________________________
Cauda equina type neurogenic bladder problems. Coeliac disease. Sicca syndrome. Ataxic gait and use crutches. Non-specific gut problems. Current meds: Codeine phosphate, occasional diazepam (Guts shredded by NSAIDs). Previously diclofenac worked well.

Top
#204958 - 04/17/11 05:00 PM Re: sciatic pain and uveitis flare up. [Re: cemc]
WhiteCell Offline
Registered Visitor

Registered: 05/31/10
Posts: 1032
Hello.

Initial uveitis can be among the most painful of all things I have ever had. Typically people with AS stay on a low dose steroid drop to prevent flares 1-4 drops per day when the flare has been controlled "quiet".

Here are some suggestions.

In your arsenal you will want a qualified ophthamalogist and rheumotologist. There will need to work together. You will also need to have an ER close to you to treat you in emergencies.

Since your pain is that severe you will most likely want a note from your doc what pain medication you can have if you go to an ER. Docs and nurses are trained to be skeptical (it's not you) and to prevent young persons from obtaining drugs. A note will help you get over that bias.

Keep pain medication and steroid drops if prescribed for you on hand. Notify a friend or family that there are times that you will need to see a doctor quickly and will not be able to drive either because of pain, medication or both.

With acute iritis flares cool cloths over the eye and drops as prescribed darkened rooms and pain medication until it subsides. You will not be able to get around that if you want to successfully get over the initial phase.

In clinical trials Remicade is far superior to any anti TNF drug for controlling iritis in HLA B27 positive patients. Far and away a better choice. (and having been on it for 5 years I can say so =).

Learn how to talk with others e.g. "it may not jump out at you how painful this actually is but iritis is ranked among the top painful events a person can have". When you go the the doctor or the ER look your best. People make snap judgements. If you are a mess with your hair all over (not sayin' you are k?) and dirty jeans you will simply not be treated as well than if you are well dressed. Sorry, that is the real world, it's not fair but that is the way it is.

Keep a copy of a recent prescription with you which you can show to a doctor in the ER or elsewhere if you travel. Iritis can flare due to changes in location, weather etc.

It is not surprising that your back and your eye both flare at the same time.

Remicade if appropriate is the treatment of choice.

Work it. Take control and make progress towards your goals.

Tears for your loss.

Get busy.=)
_________________________
AS 40 years beginning @ 18 years old with Reiters Syndrome
Remicade since 2001.
Glaucoma- Right eye Trabeculectomy/lens replacement 2006.
Corneal Transplant DSAEK Right eye 2008.
Supra Ventricular Tachycardia. Cured by RF ablation 2006.
Remicade 5mg/kg every 7 weeks.
Pred Forte and Combigan eye drops daily.

Critical Care Emergency R.N. Alaska & California.

Grasp the challenge and succeed.

Top
#204971 - 04/17/11 07:34 PM Re: sciatic pain and uveitis flare up. [Re: WhiteCell]
sequoia
Unregistered


welcome, emily. we have a 20-somethings forum, on the list if you haven't been there, it is specifically because you can understand each other better than us old farts, sometimes, LOL!

just want you to know we are all in this together and we may have the same disease (dx) but we have our own version of it - and, what works for one of us may not work for the others. but, we can give each others tips on what works for us and that is the value of the forum.

so sorry for the unsufferable pain you are experiencing. i think pain is the worst part of this dx. it is important that you get your inflammation under control through working with your rheumy on the different meds to see what helps you. i too, am looking forward on your behalf for your rheumy visit.

be sure to make certain you get your questions answered. take a small 3X5 card with a couple of questions, even 3 major ones. they are a starting point, and the doc should be responsive to you.

i will write more later since you are just getting acquainted.

prayers and peace to you, emily, on this journey. just continue to join in.

Top
#204977 - 04/17/11 11:50 PM Re: sciatic pain and uveitis flare up. [Re: ]
Mark D Offline
Registered Visitor

Registered: 10/02/03
Posts: 1801
Loc: Austin, TX
Hi Emily and welcome!

Oh boy. What can I tell you. The bad news is it sounds like you could have Ankylosing Spondylitis. The good news is that in spite of your troubles, you found this place pretty quick! You have some decent docs (the one who thought about HLA-B27 was sharp to check that!), and you will probably have a diagnosis pretty soon. Trust me when I tell you that especially for women it can typically be a very long time before they find out what is really wrong with them. You were lucky to find out about this so early on. If you do have AS (and I hate to say it sounds like you probably do), this place is going to be a really helpful support. You won't find a better place and hey -- it is free! (Though I do recommend becoming a paid member of the SAA as soon as you can).

Next, your problems with uveitis sound awful. I am sorry to hear about that. You must take care of your eyes, even when finances are low, because nobody can afford to lose their eyesight. Most people with AS do not get uveitis, but a huge number do, which is why there is an association recognized between the two diseases. Having the B27 gene does not guarantee you have AS, but it does make it more likely. AS is not just a spinal disease -- it can attack any joint (all of mine are affected now), but the classic place of attack is the lower back. The fact that you had more eye problems than backaches at first is not the typical way AS presents, but it happens too. Over time you will likely have more joint problems than eye problems, if you do follow the more normal pattern.

The worst part about having AS is having a lot of aches and pains. Nobody can tell how much you hurt because you won't look sick. Uveitis is a scary complication that a lot of AS victims also have to deal with. I myself have never had it. The good news is that although there is no cure for AS, the sooner you begin treatment, the less likely you will suffer from full-blown symptoms and the extreme end of the damage path (i.e., spinal fusion, which only some get).

In all likelihood, your rheumatologist is going to prescribe you NSAIDs (Non-Steroidal Anti-Inflammatory Drugs) which usually work well to reduce inflammation that causes joint pain. Hopefully you will end up like I did, and you will do really well on that kind of treatment for a long time. (I did for over 20 years). But many of us are now on all kinds of drug cocktails, including expensive medicines that you inject. Having good health insurance and not losing it is very important if you have AS. Your rheumatologist will probably become your primary doctor. Hopefully you will not need a pain specialist as well. (If you feel you need pain medicine, ask your rheumatologist if she can prescribe it -- they generally won't until you have already been taking NSAIDs for a while and then you must ask for it, if needed). I take morphine for pain control now, because mine is so bad. To save money on meds, ask for generic NSAIDs.

My main advice is to read up on all parts of this website and learn all you can. Our disease is actually caused by an immune system gone haywire -- attacking its own body. The pain and stiffness go away when you move around more, so keep dancing if you can. However, be on the alert for unexplained fatigue. Brain fog is part of that. It is also a typical symptom of AS. Please post any questions you have here and you will quickly get a lot of replies from others who are experienced dealing with the same problems.
_________________________
DXed with AS 30 years ago

Top
#204985 - 04/18/11 07:30 AM Re: sciatic pain and uveitis flare up. [Re: emmlura]
JenInCincy Offline
Registered Visitor

Registered: 05/19/08
Posts: 13278
Loc: Cincinnati, OH
Originally Posted By: emmlura
Am I foolish to expect immediate relief?

Also has anyone ever encountered people that didn't understand your pain so they didn't believe you? I'm kind of running into this problem a lot.

And what's up with this brain fog?! It's no fun at all. I feel blank.


Hi Emily, welcome, although I'm sorry you have to be here. Sorry to hear of your miscarriage as well - I lost my first pregnancy around 4 months and though it was over 12 years ago, I still remember how hard it was.

To your first question - you're not foolish, just very very optimistic smile Diagnosis can take a while, and then figuring out a treatment regime that works can also take a while - but sometimes it's fast!

It's very common for people with "invisible" diseases or health problems to get the reaction you are getting. I don't have any good advice on that, other than, if you are getting it from people whose support you need, try to find a way to educate them.

Brain fog: pretty common "side effect" of chronic pain, unfortunately .... hopefully once your root problem is treated, this symptom will improve as well!

As for the medical marijuana, it's been discussed here:

http://forums.spondylitis.org/ubbthreads...true#Post200640

It would be a good idea not to use marijuana while you are trying to get diagnosed/treated. #1, if in fact it does help you, it may be hard to determine whether doctor-prescribed medicines are working or not. #2, if your rheumy happens to refer you to a pain management doctor, or does urine tests, you may find people refusing to treat you. #3, inhaled marijuana is a health hazard. If you absolutely MUST pursue medical marijuana - legally or illegally - it is MUCH better to use a non-inhaled form.

Also, smoking marijuana OR cigarettes may increase your risks from thrombophilia.

Good luck at the doctor on Thursday! Be sure to bring a written list of your questions so you don't forget anything smile
_________________________
Jen, 42, happy partner of James and Moma to Evan, 14, & Lucy, 12.5 (Crohn's dx @ age 3; on Remicade since April 2010.) I take piroxicam, Flexeril, & Nucynta ER nightly. 3 anti-TNFs didn't pan out for me.

"Science is the father of knowledge, but opinion breeds ignorance." -- Hippocrates

Top
#205048 - 04/18/11 05:25 PM Re: sciatic pain and uveitis flare up. [Re: emmlura]
Tacitus Offline
Registered Visitor

Registered: 06/06/03
Posts: 2728
Loc: Palm Springs area, California

WELCOME, Emily:

Sorry for Your present state of affairs, but regret I have no good news about rheumatologists; I can only relate through my own personal experiences and that of others I have corresponded with.

Iritis is a serious enough condition, and can cause blindness, so it is important to get it under proper control. For me, this does not mean palliative treatments that do nothing for the basic CAUSE of iritis and also the cause of AS.

Twenty years ago, I was suffering: Plantar fasciitis, costochondritis, TMJ pain, severe hip bursitis, kidney stones, and iritis about three times yearly on average. My vision has been compromised to a great extent and I had to act upon the information I found on the internet through now very close friends.

My very last episode of iritis lasted five days, and I had severe knee edema at the same time, which lasted for over a month, but I got both under control myself. Despite this, I carried those steroid drops with me everywhere for more than ten years since my last episode. I really really HATE IRITIS!

If You desire enough to eliminate iritis and sciatica, You can and I suggest that You do so. Could there be any rheumatologist who could help You as much as You can help Yourself? You will be disappointed if You believe they have anything truly useful for those of us with AS. I have been down that road, but most of us need to discover the truth for themselves.

Good Luck to You,
John

_________________________
Nota Bene: I am not a medical doctor, and my views do not represent the opinions of the SAA
AS Resources
My Long, Boring AS Story
Professor Alan Ebringer Diet and AS


Top
#205052 - 04/18/11 06:11 PM Re: sciatic pain and uveitis flare up. [Re: Tacitus]
emmlura Offline
Registered Visitor

Registered: 04/13/11
Posts: 9
Loc: New Orleans, LA
Hello again and thank you all for your responses. I teared up a bit at all the support and advice. (haha bit emotional lately) I'm sorry I haven't responded sooner I've kinda had myself closed off in my room for a few days hiding from the world. The one thing I do know about hitting rock bottom is that it can only get better. I tell myself this everyday. It helps. smile

Unfortunately the 800 mg ibuprofen doesn't help with my back or knees or ankles. smirk I guess I forgot to mention my obgyn prescribed me that to help with the pain from endometriosis.

I have a bottle of prednisolone drops that I keep in my purse all the time just in case. I get uveitis about once every three months sometimes every other. It lasts anywhere from about 4 days to 2 months on and off. But it's usually about two weeks. I'm pretty worried about this because my grandmother went blind. I'll just have to train my little chihuahua to do more than just cuddle and give me kisses. haha

Thank you all again for responding and I wish I could give you all hugs for the suffering you have all been through and are going through. I admire how strong you all are. smile Warm wishes new friends!!

Top


Moderator:  Chris Miller, ElinAslanyan 

        Bookmark and Share RSS Feed


About Us |  Join SAA |  Educational Materials |  Contact Us |  Privacy Statement |  Guidestar
Good Operating Practices |  SAA Store Policies
� 2012 Spondylitis Association of America, All Rights Reserved