Worried and Scared, So Lost! | Arthritis Information

Hi, I am brand new here. I can't believe almost 3 years after surgery for an autoimmune disease I am posting at another site searching for answers....again. I had/have, never really goes away, graves disease, failed medicine and had it out in the nick of time, almost died. Found thyroid cancer in there that was just starting. It was the kind that they cut out and say your cured. Not so confident. FFW to now..........

For 8 years now I have been suffering immensly with back pain. Had a bulging disc at the l4/5 level and chiro put me on decompression table and I was basically cured as long as I watched myself and didn't lift twice my body weight,lol. During that time I had trouble with the sacroiliac joints and he worked on them as well. I am/was a runner........since my surgery I never got it back. Not going to happen, maybe never. My family doc said I had fibrositis then later said I had fibromyalgia. I settled for that, took tramadol for 8 years, now on the max dose. Well, over the last 6 months or so I started to experience stiffness in my spine. Stiffness and pain. I have trouble at times getting out of bed in the morning or moving around at night. Fine, a little concerned. Then it started happening, for a strange reason my r foot started hurting, burning pain, swelling, toe joints hurt, l foot as well but not as badly as r. Plantar faciatis (sp) and at the ankle my achilles gives my a little trouble where my ankles stiffen up. I was at the point one day I had to use crutches to get around my foot hurt so bad.

Went to my first rhuemy and he said I had signs of osteoarthritis and definitely had fibromyalgia. Gave me a script for sulfa something and said he will see me in 3 months. Ran a bunch of blood work. Ok fine, I'll manage, fibro won't kill me, only make me wish I were dead.

Then I went to my 2nd opinion rhuemy. (actually I had an appt. with him first but I couldn't get in for 3 months! Figured it wouldn't hurt to get 2 opinions aka my first visit) Didn't go in with any expectations, waiting for the fibro dx. Didn't happen. I was told in there that there is a certain type of arthritis that effects the tendons? in the foot, my foot was a symptom, my knee hurts, and my s i joints hurt. He wanted an xray of the s i joints to make the dx. I was given celebrex which totally rips up my tummy, been there on running injuries and was never able to go the NSAIDS route especially since I ripped my tummy up with ibuprofin running through pain and masking it with motrin just to get through a marathon. Stupid! Mostly back pain. Well, I'm on prilosec and was told to try the celebrex and just make sure I'm taking the med for my tummy. I did and noticed my foot pain began to go away, but did swell and became red once. I still felt the tendon that ran from my heel to toes but my brain was saying, it doesn't hurt. DID NOTHING FOR MY BACK!!!! My PC told me to take the celebrex every other day to give my tummy a rest and to tell you the truth, considering the other choices if this is indeed AS related, I rather rip my tummy up! Last night on my celebrex night I woke up and had that awful burning pain and i felt like I had a club foot, I could not walk on either foot, my back was screeming and s i joints were letting me know they were there. They have been for 4 weeks now. I thought, I can't live the rest of my life like this let alone give up my athletic lifestyle, this is not fair! I did my time with the graves, time is supposed to get better now! My biggest concern was what if? What if the cancer spread to my spine and this is why I'm hurting. THis is why I have gone on to find out what is going on. Plus I can't run on my foot, I can't even walk! I hobble at work and am eating my tramadol just to function, just to get out of bed, just to sleep at night. The pain is way too much to deal with anymore.

I see my rhuemy for his dx Monday. I don't know how I will handle the news. Crazy but what if they say, couldn't find anything? Freak! They ran a blood test that took 2 weeks to come back, does anyone know what test that is and what it's all about? So far my ins. has paid over 5,000 for xrays, blood work a whole lot of money for no answers. They ruled out lupus, lyme, 99 percent RA, was told I could be at the beginning stages and am seronegative yet that came back ok.

I have a vitamin D deficiency, this is the only thing that has come back showing. My gut and research on the net is leading towards AS. My PC got a report back that said inflammatory spondylarthropies, (sp) and she went on to talk about AS, Reiters, etc. Then told me my options, like the methexa something, IV meds, one that is like a low dose of chemo or something to that effect. I don't know, Just reading about what AS can do to the body........I want to be active and run a marathon again. I don't want to be crippled up and helpless. Any words of encouragement? Sorry so winded, little upset atm. PH

I will try this again, i might have half a post on here - have you ever had psorasis? even one dot of Psorasis means you have had it. It sounds like you probably have already checked - if not check out Psoriatic Arthritis- you will not have a rheumatoid factor.

I have it - bent toes, lose toe nails etc. thought it was from my running.

good luck!

I don't think I have Psorasis, don't even know what it would look like if I did. My follow appt at rhuemy number 2 has dx'd me with ankylosing spond, oh what the heck, AS. I will read about the arthritis you speak of anyway. Maybe look into some pics on the net. I'm pretty sure my rhuemy is right on the money though, I have all the symptoms and my xray showed my right SI joint going bad, don't exactly remember the exact term they used. I space out when I don't want to hear the bad stuff. Actually asked me if the right side was hurting really bad atm and I was like no the left does. So I was sent for a complete body bone scan, injection with the radioactive crud and all. I wonder if it will come out ok cuz I was told to drink plenty of fluids til I went back there 3 hours later and I fell asleep. Guzzled some, drank a coffee but I don't think I drank enough. Maybe it will light up really bad in one area since the injection didn't spread evenly and have to have a repeat scan,lol. Well not so funny for the insurance company.
Anywho as of today, I seen the running word in your post and it sunk my heart. Ready to remove my medals and any sign of my running career but it would upset my kids. My r foot has plantar fac. really bad, to the point where there is burning pain, unbearable burning pain. I haven't run in months so I know it's not from running. Had to use crutches a few times cuz I couldn't walk on the foot. Now my knees are acting out, never had knee problems, was told I had very strong knees just a few years ago. The celebrex is now off my med list, besides upsetting my tummy it caused an allergic react so now I'm trying mobic. I am barely tolerating it, it's only 15 mgs. The rhuemy did the scan cuz he wants to absolutely prove without a doubt that I have AS cuz If I can't tolerate the NSAIDS they will have to move me up to the serious drugs where they said it will be for life and I will have to have continuous blood tests. I am not looking forward to this and hoping my mobic experience settles soon. Prob is it really isn't helping, wears off quickly. Does nothing for my back pain. Could mean a stronger dose, I don't know. I feel like I'm in a no win situation. I know they have to control the inflammation or I am dogmeat and will cripple up, really worried here. I have many drug allergies. I am taking tramadol for the pain and it is only taking the edge off, at the max dose and it's like taking baby aspirin for a migraine! Elbows are tender and hurt, am I a big WHINER or what???

Do you still run? Is there a glimmer of hope? I feel like my life was stripped from me. I'm very active, well was, and my identity was my running. I miss racing, I miss the distance runs, the marathon training then the race itself after the build up. Almost like a kid on Xmas morning. Now all I have is depression and tears welling up when I see a runner pass by.
Oh yeah, I have fibromyalgia to add to my misery. With all this why would I want to get out of bed and even try anymore? They put me on an anti d, paxil, to help with the anxiety, depression and pain. give me a break, I must have some real stuff going on inside cuz it isn't helping the PAIN! My PC thinks fibro is a garbage bag term for I don't know what is wrong with you so we will call it this. Hey pain hurts,

I was sort of diagnosed with AS last month, but now leaning toward a diagnosis of Polymyalgia Rheumatica. So I have researched a ton on both diseases. Did your Doc show you the exercises you are supposed to do every hour for AS?? It keeps the bones in your spine, hips etc from fusing. I heard it helps relieve pain as well. You can google and see pics of the exercises. Also, I'm so sorry about your plantar fasciitis!! I had that a couple years ago and OUCH, burn is right!! It took me a solid year to get over that. What my Doc had me do is to ice my foot 2-3 times a day with a frozen bag of peas or roll it on a frozen can of juice (esp. right after you have had to be on your feet for a while walking etc.) Also stretch your ham string often. I would put my toe on a step or against the wall and stretch it several times a day, because as you know that achilles runs all the way up the back of your leg. There is a cute young guy with AS on you tube that has chronicled some of his struggle with diagnosis, working, pain, also taking the Remicade infusions etc. Just type in Ankylosing Spondylitis on you tube and you can find him, TMMPhotography or something like that, his name is Tylar.

One more thing, ask your Doc about trying the med "Low Dose Naltrexone" they have experimented with using it on many auto-immune diseases and had really good results. You can also learn more about it on you tube or google. It does not cause stomach upset from what I read, but you do have to be on it for about 8 weeks to see results. Its in the exciting new research stage, its really an old drug being used in lower doses in new ways.

Good Luck,

Donette

Just thinking about that foot pain is making me sick. I will look at youtube now, thank you. The stretching in itself hurts. The hams, i will be adding that immediately. I'm , was a runner. I know the stretches. It hurts so bad knowing the running is forever no more and what was so simple to do like those warm up stretches are now difficult to do. When did this all happen to me? Since my graves dx 3 years ago, the surgery 2 years ago, it's been downhill with very sharp dips thrown in the mix.

Will ask about that med, thanks for your help!

have you ever tried yoga? I do yoga and power yoga/yo-lates and it is so helpful for my stretches, etc. I, also use to run. I have Psa, osteo and Fibro,

I still have chronci fatique so bad that I sleep then exercise and then sleep. Try doing everything a little at a time and you will have some relief. Good luck!