Spondylitis Association of America Forums General Discussion General Message Board for Ankylosing Spondylitis and Related Diseases Feeling lost, helpless. Need help or advice..

Hi everyone. I have been on here briefly and made a few posts. I am at a point where I am feelling helpless and like giving up.

I saw a Rheumy and explained my symptoms and she said I have a form of Spondyloarthritis and this was responsible for all my symptoms. I am HLA-b27 positive and did about 6 weeks worth of Enbrel before I stopped. I will tell you my story below.

The last 2 years have been hell for me. It started with chest pain and weird heart palpitations. Got checked out and told that nothing was wrong and I was too young. OK I thought. Anxiety ?? maybe.

Then fluid began filling right above my right knee. It felt tight and just a little off. Slowly but surely my left leg started doing the same right above the knee. It got so bad that I could barley get out of bed. I went to the ER because I couldnt work and they said I need to see a Rheumy because it sounded like a type of arthritis.

I coudnt get an app for about 3 months, so I went to my PCP and said I was feeling really crappy and weird. I also was having really bad shortness of breath.

Went to the pulmonologist and got chest xray and breathing tests, she said everything looked OK.

Heart was still feeling weird so I went to a different cardiologist and said this is more then anxiety. He did an Echo, said everything looked normal. I wasnt satisfied. He had me wear a heart monitor.. It showed PVCS or an abnormal heartbeat. This had him order a CT Aniogram to check my arteries. They were normal. They basically then told me my heart is ok and its something else.
I truly dont know if they missed something or if they just werent looking for the right thing. My arteries are fine because I am only 25 so im not sure what prompted them to only look at the arteries.

Anyway I had some stomach symptoms also. lots of gas, bloating, thought maybe something in my gut was causing all this. had a CT of stomach and showed inflammation of the upper intestines. This prompted an Endoscopy and Colonoscopy. Everything looked fine ( of course..)

Now my Neck was starting to get very stiff. I have flank pain in my left side where the kidney is. It feels like a tight squeezing feeling around my kidney like something is grabbing it.

Finally got the app with the Rheumy and she did an Xray of my pelvis. I have had really bad sarcoiliac pain for years now, and with my other symptoms she thought it was AS. She had me start enbrel. She said she had no idea what the kidney pain was from, or the heart issues. She basically said it was probably just musculoskeletal pain. It cant be. My kidney is constantly hurting, my heart has weird palpitations all the time, I have horrible shortness of breath. I wake up and have a really bad heavy feeling in my chest. Almost like I swallowed something big and its slowly going down my Espohagus. But everything has been checked with the endoscopy. I Am so exhausted all the time and sleep for 10 hours or more and still feel so tired. It feels like something inside me is literally sucking the energy out of me.

My left eye is now super blurry when I wake up, it takes a while till i am seeing normally out of it. It is red a lot and just feels like there is something in there. I have a constant dull headache and can feel it mostly in my left temple and it almost goes into my eye with the headache. Went to the eye doc, he said he saw inflammation in there. When I said i had the HLA b27 gene thats all he needed to hear I guess. He said I needed to do a steroid in my left eye once a day and then start a drug called remicade. I looked it up and I believe its an injection as well. I am already uncomfortable with the Enbrel and now they want me on more drugs.

I did the enbrel for about 6 weeks and the only change I felt was the fluid in my knee greatly reduced. Everything else still felt so weird and like something was so wrong.

I decided to stop the enbrel and look into other things. Maybe I have an inflammatory arthritis like the doc suggests, but what is casuing all these weird other symptoms that wont show up on any tests?

I went to peru in 2015 and got super sick while I was there. I went to an infectious disease doc and he did some tests of some common parasites found around there. again nothing was found.

I feel like maybe I do have AS or Spondy arthritis but maybe there is more. I fear I have some weird parasite that these doctors dont know anything about, maybe a weird fungal infection or something that is being overlooked. I am scared to keep with the enbrel because it can lower my immune system and if infact have some weird infection or parasite this could get even worse.


I am at a point where my life is so effected by this and I just want to feel normal again. I can deal with joint pain and not being able to walk, but the crushing feeling in my chest and kidney, the exhaustion and those symptoms are just killing me. I feel SO off and so wrong and i just am so hopeless as ive been to every doctor possible and they cant really explain whats going on. My neck feels so stiff and horrible and I just cant feel normal. My rheumy just wants to give me drugs, she hasnt said anything about diet, exercise, food allergies, anything. I have read alot about those and I am surprised she wouldnt even mention it, she just wants me to stick myself with enbrel and said all will be ok.


ITS NOT!!! I am suffering so bad and just feel my life is over. I want to be normal again.

If anyone has actually read all of this, I will take any advice at all. I am so desperate. Western medicine is not helping me, maybe its time for something different.


PLEASE ANY ADVICE OR HELP

Hello, Csmitty435:

Regret You have active AS that was made worse by colitis contracted in Peru.

Personally, I like the idea of the biologic drugs, and these have helped many people, but I have never needed them as most of my skeletal damage had happened before they became available and at which time I began starch excluding diet plus antibiotics.

Yes, chest pain (costochondritis), knee edema, eye situations (iritis, conjunctivitis, episcleritis, and others), IBS, SIJ pain before fusion, and about 200 other conditions are directly related to AS.

You can learn how to eliminate these symptoms, following the suggestions in Carol Sinclair's "The New IBS Low-Starch Diet," with foreword by Professor Alan Ebringer and a description of the mechanism of this disease. A book written over a decade earlier by Giraud Campbell has about the same regimen but lacks the scientific explanation. A great site for Paleo recipes is Andrea Wyckoff's Forest and Fauna.

Anyone can prove the diet connection with AS by fasting about six days usually works but I often did 11 days and one time 20--got me into very good remission, but dietary ignorance got me back into the club again in a couple of months.

HEALTH,
John

It does sound like AS, and AS can be responsible for every symptom you list. All those weird symptoms -- chest pain and palpitations, gastrointestinal issues that aren't severe enough to show up on scans but nevertheless drive you crazy, shortness of breath, anxiety, just feeling sick -- I experienced in my initial AS flare which lasted almost 18 months. IMHO, you didn't give Enbrel enough time to work. It can take up to 6 months to be effective in some people. Remicade is an infusion, not an injection, so can be a less convenient option for many people. If I were you, I'd go back to the rheumatologist who prescribed the Enbrel, restart the Enbrel, and give it time to work.

Oh, and fyi, many (perhaps even most) people on biologics such as Enbrel do not notice any significant lowering of immune function while on the drug. I, for example, have noticed that I get fewer colds, etc., since starting the drug. In any event, you should be monitored closely initially with bloodwork to make sure your white count is in normal range, etc.

I am so sorry you are suffering so badly. I am also sorry you only took the Enbrel for 6 weeks, it takes 3 to 6 months to get the total effects of it. It will help so many of your problems.

Remicade is an IV, a little more of a hassle because you have to take time, but many many people have good effects with it.

You need treatment!!! Now, or those joints will get damaged. I too have some rapid heart beats but it is much better now that I don't have the constant pain. Pain effects so much of our body, heart, body etc.

Hello, I'm sorry you're fed up and in a crappy place right now. If it helps, you've helped me. Some stuff you've listed above, I have and I didn't know it could be directly from AS. I've explained what I thought these symptoms to be for me.
All IBS symptoms, so I went gluten free four years ago and it's helped me immensely. I used to think I was a coeliac but only recently, my GP told me that I mightn't be good a digesting gluten because my thyroid is slightly elevated (hypothyroidism). As for stabbing heart pain and heart palpitations, I put it down to having a murmur and probably anxiety and/or anaemia. I get get blurry vision and stabbing eye pain but I've never been told it's uveitis. I also get intense stabbing pain in abdomen, flank, pelvic and kidney locations, even though I'm gluten free.

I get the feeling that doctors don't really care about problems that aren't life threatening, but are just very annoying and tiring for patients to have to live with.

However I am very grateful that I have enbrel to help my SI joints and sulfasalazine to help my feet. My rheum once told me that his priority is to eliminate pain in the spine before anything else.
I too would recommend trying Enbrel again. And I'm really sorry again to hear you feel so helpless. Please keep trying.