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Please help! Looking for your input!
#240403 09/12/12 10:49 PM
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Kait Offline OP
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My story... how do I make it short? Well, I'm a 22y/o F who has been suffering with chronic pain for 4 1/2 years now. At that time I was in a firefighter training class and I was barely 18. Towards the end of class I was sore, but we obviously did a lot of heavy work... so I ignored it. The pain continued and got worse. Once the class was over I went back to work. I remember having days where it was hard to stand. If I had to stand for any length of time I would be in a lot of pain, including a sharp pain shooting down the back of my left leg. My PCP sent me to a back doctor. He took x-rays and said they were normal and that I was much too young to possibly have any disk problems. He claimed that I strained my back and sent me to physical therapy. My PT was convinced, with my pain, that I had a disk injury and encouraged me to get a second opinion. So I saw this new orthopedic surgeon. I saw him for over a year. He did more x-rays... normal. Did an MRI and said that there was SLIGHT bluging of a disk or two, but nothing that should be causing the amount of pain that I had. He gave me pain meds which I was NOT happy to take, but it got me through the day and helped me sleep. He sent me back for more physical therapy and eventually aqua therapy as well. PT didn't help. Biofreeze and electric stim felt good, but it was only short term. Eventually he told me I was at my MMI (maixmum medical improvement). He basically said that I was never going to get better and that I Would have to deal with the pain. Being in that amount of pain at that age and being on pain meds was NOT ok with me. I saught out help from another orthopedic doctor. He did another MRI of my full spine- cervical, thoracic and lumbar. Said that he didn't see anything abnormal but believed my pain. He was concerned about the numbness in both legs that I reported. I get numbness in both my legs if I sit in a certain position (without any pressure on my blood vessels which can cause numbness in healthy people). SO- he sent me to a neurologist who basically told me that he thought that the cause of my pain was from my bipolar and that I need to "chill out" and that I should be put on an anti-anxiety medication. Well for any of you who've had people tell you that your pain isn't real or that it's in your head... you understand EXACTLY how AWFUL it felt to hear that! I tried another neurologist. He did a nerve conduction test and drew a bunch of blood. The nerve test was normal and the bloodwork was normal other than a vitamin D and iron deficiency... so I started taking some supplements for that. With no improvement, not even in my fatigue. He at least did his best trying to manage my pain for me. We even tried Prednisone and an anti-inflammatory. He eventually got sick so I had to find another doc. I started seeing a chiropractor who was recommended to me. He looked at my x-rays and MRIs and told me that my left leg is shorter than my right leg and that I probably have SI joint dysfunction. None of the other docs ever mentioned this. He made me special orthotics which I wear in my shoes everyday. I'm no longer crooked, but I still have pain. He tried some gentle manipulation and even an SI joint belt, but no luck. He recommended me to a spine and pain management doctor who I see now. We tried corticosteroid injections in both SI joints, but no luck. He did a CT scan which he said showed air bubbles in my SI joints which in a 22y/o is indicative of inflammation... so we knew that inflammation was the problem. He tried test injections for a nerve ablation and it helped! This meant if they went through with the actual nerve ablation (the test injections were only lidocaine) that it SHOULD work. BUT- my insurance denied it... OF COURSE. He mentioned the possibility of Anklyosing Spondylitis.... but he said that it was very hard to diagnose and could take years. So, he didn't know what else to do so he recommended me to a rheumatologist. The rheumatologist put me on another course of prednisone with no results. He also tried me on another anti-inflammatory, Arthrotec, which gave me a lot of stomach pain. He recently took some more x-rays which were reported to be normal. He said that he wanted to see if inflammation was the problem... even though my pain management doc said that it DEFINITELY was the problem (and could be seen in the CT scan). So now they are saying different things. Rheumatologist wanted to do ANOTHER MRI but insurance denied it. SO I'm basically stuck right now. I have no true diagnosis and insurance doesn't want to pay for anything anymore. I really wanted to see if my symptoms sounded like anything that any of you had experienced in the past. It would be nice to have some sort of direction, if you guys think that it sounds like it could POSSIBLY be AS or if it's definitely NOT AS... either one would be a help. I was negative for HLA-B27, most of my bloodwork is normal, but I have a slightly elevated rheumatoid factor. I only have pain in my SI joins (which can radiate into my hips) I don't have pain in other joints. I'm stiff in the morning, after a ride in the car, or after any lack of movement. My most painful times are in the morning and at night. Movement usually helps decrease the pain, but I'm also not able to stand or walk for LONG periods of time (ie. walking through the entire mall or a large grocery store). I'm ALWAYS exhausted. It's hard for me to stay awake. I have little motivation to do anything anymore. I literally have no idea what to do anymore. The docs don't seem to have any clue. I don't know if I just try yet ANOTHER doctor and if I do, which specialist do I try again.... *SIGH* I just want to talk to people who get how awful it is to be in pain everyday.... to always be exhausted and have no motivation. It's an awful feeling being 22 years old and on pain meds and not being the active person I used to be...... Thanks for any input you offer... it's greatly appreciated....


One day at a time...
Re: Please help! Looking for your input!
Kait #240404 09/12/12 10:59 PM
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Mayo Clinic Rochester MN.


Diagnosed 2001 after years of joint pain. Remicade started 2002 - 5mg/kg every 7 weeks.
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Re: Please help! Looking for your input!
Kait #240406 09/12/12 11:13 PM
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Kait, you have been through so much in your young life. I would indeed have the pain management doctor along with the rheumy have the insurance reconsider that nerve burning if you had a positive response to the test. I do understand your pain and your frustration as I too have pain that is not being treated properly. Can they increase your pain meds?


Tia
Re: Please help! Looking for your input!
Kait #240407 09/12/12 11:18 PM
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I'm currently taking Vicoprofen 7.5/325mg 3x a day. It's a small dose.... but I'm 22... I don't like taking these at all. I'm not sure which I'm more nervous about... asking the docs to increase the dose, or taking it. I know an increase certainly wouldn't help with my fatigue. I wish my insurance would have paid for the nerve ablation... but they said even if we appeal their denial, that there is no way it will get approved because the procedure itself hasn't been approved (I assume by the FDA). I think they just don't want to pay for it... I don't know what to do...


One day at a time...
Re: Please help! Looking for your input!
Kait #240408 09/12/12 11:37 PM
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Hi Kait,
Sorry you are having such a hard time, most of us here know the frustration that you are dealing with in trying to get a answer for your pain. Like you I am HLA-B27 negative but my blood work isn't normal and I have visible damage on x-rays. Of course I am almost twice your age, grin but my early symptoms started at 17. It does seem odd that you didn't respond to Prednisone if it is inflammation, maybe they didn't keep you on it long enough? I usually respond within a few days and it is great relief though certainly not good for long term use. I think that there are several people here that use an NSAID patch rather than pills and have some success with that. Maybe one of them will see this post and respond with suggestions. I think that they can still cause some GI issues but are not as bad as the pills. You have come to the right place for support, there are a lot of great people here. I hope you find something that works for you.


Kat, 42, mother of two great kids and wife to a great husband who manages to help me with my battles and still fight his own. AS/PsA (weird, I know) diagnosed Jan 2012, IBS, psoriasis. Suffered with back issues since my teens. Failed Enbrel due to bad reaction, started Humira 06/01/12, only helped briefly.Started Remicade 01/28/13 had severe reaction to the 4th infusion.currently off of biologics.
"Sometimes God calms the storm,Sometimes He lets the storm rage and calms His child."
Re: Please help! Looking for your input!
Kait #240410 09/12/12 11:46 PM
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They had me on 10mg of Prednisone twice a day... for about a week, week and a half....


One day at a time...
Re: Please help! Looking for your input!
Kait #240411 09/12/12 11:47 PM
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I was 22 when the pain down my legs through the burdock's started. De did xrays tried nsaids even bexrea when it was on the market. Just this year, about 2 months ago I got my dx finally. I don't know if it was because my disease became so active recently Oe simply finding the right Dr. Have they tested your SED rate in your labs? If not, ask for it. I have seronegative arthritis so my RA and ANA are fine but my SED is extremely elevated. But I am HLA-B27 positive. Good luck ask for a second opinion from a rhumey!


Jamie, 29, mother of a wild 3 year old, wife of super supportive college student husband, dx with fibro, IA, spondoloarthropalthy, depression, anxiety. HLA-B27 positive. First sign of IA spondo in 1999, first fibro attack/flare up in 2010. taking sulfasalzine, enbrel, neurontin, hydrocodone, buspirone, celexa, zanaflex, xanax. Wanting my body back!
Re: Please help! Looking for your input!
Kait #240414 09/13/12 03:27 AM
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I've never been on true prednisone, but rather 5-day tapers of methylprednisolone (aka medrol packs) during major flares. Others who have done courses of prednisone will probably chime in re: whether 20 mg daily of prednisone for 1 week would "work" for them. Medrol definitely helps my inflammation; it improves things but definitely doesn't make it 100% better, or anywhere near it. Also, some things tend to flare back up as soon as I go off of it. I guess it depends on how you define whether it works for you. If it did absolutely nothing for you, that does seem indicative that your pain isn't inflammatory in nature. Have you tried any nsaids besides arthrotec? Maybe advil/ibuprofen, aleve/naproxen or aspirin? They would need to be taken at antiinflammatory dosages to see real results, but have these over-the-counter options ever helped your pain at all?

For what it's worth, I have never had any kind of positive blood test, short of vitamin D deficiency and one barely elevated WBC. I also do not have signs of inflammation or damage on x ray or MRI. I was diagnosed based on symptoms, family history, medication response and a nuclear bone scan (my current rheumatologist actually refutes the worth of a nuclear bone scan for diagnosing inflammatory arthritis, but she accepts my diagnosis anyhow).


Mary, 25, happily married pro photographer, momma to 2 great danes.
Dx: Psoriatic Arthritis, Fibromyalgia, Psoriasis, Sjogren's, IBS, Hiatal Hernia, & possible Endometriosis.
Meds: Stelara, Methotrexate, Relafen, Omeprazole, Lyrica, Tizanidine, Voltaren Gel, Tramadol
Re: Please help! Looking for your input!
Kait #240417 09/13/12 04:05 AM
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I hope you don't mind. i have taken your post somewhat out of order. But, you said:
Originally Posted By: Kait
I really wanted to see if my symptoms sounded like anything that any of you had experienced in the past. It would be nice to have some sort of direction, if you guys think that it sounds like it could POSSIBLY be AS or if it's definitely NOT AS... either one would be a help.
How about a big MAYBE? Some symptoms you mentioned do sound like they could be due to a Spondyloarthropathy. Other things you have mentioned point away from Spondyloarthropathy. A diagnosis of Ankylosing Spondylitis does require that you meet specific diagnostic criteria. Radiographic changes to the SI joints are necessary for a definitive diagnosis of AS. Without radiographic SI changes, you could be diagnosed with another form of Spondyloarthropathy such as Undifferentiated Spondylitis (Non-Radiographic Axial or Peripheral Spondylitis), Reactive Arthritis, Psoriatic Arthritis, etc.

Originally Posted By: Kait
I don't know if I just try yet ANOTHER doctor and if I do, which specialist do I try again....
Rheumatologists are the specialists that deal with AS and other Rheumatic diseases. You need a good Rheumatologist - your current one or a different one if you choose. Orthopedists, Pain Management Physicians and other specialists have their place, but they really can not accurately diagnose and treat Spondyloarthropathies.

Originally Posted By: Kait
He did a CT scan which he said showed air bubbles in my SI joints which in a 22y/o is indicative of inflammation... so we knew that inflammation was the problem. .... He mentioned the possibility of Anklyosing Spondylitis.... but he said that it was very hard to diagnose and could take years. So, he didn't know what else to do so he recommended me to a rheumatologist. ...
Referring you to a Rheumatologist was the correct call. CT scans are not generally used in the diagnosis of AS. In fact, according to the ASAS Consortium (a highly respected group of AS experts) CT scans detect bony changes but DO NOT show active inflammatory changes. From the ASAS handbook:
Originally Posted By: ASAS Handbook
Active inflammatory changes can also not be seen by CT, and fatty degeneration of the bone marrow (as an early sign of chronic changes) is only detectable by MRI and not by CT.
I do not think that it is accurate to say that CT detected air bubbles in the SI joints are indicative of inflammation in a 22 year old or anyone else for that matter. CT Scans of bones and joints do not show active inflammatory changes.

Originally Posted By: Kait
He recently took some more x-rays which were reported to be normal. He said that he wanted to see if inflammation was the problem... even though my pain management doc said that it DEFINITELY was the problem (and could be seen in the CT scan). So now they are saying different things. Rheumatologist wanted to do ANOTHER MRI but insurance denied it. SO I'm basically stuck right now. I have no true diagnosis and insurance doesn't want to pay for anything anymore.
The X-rays and MRIs your Rheumatologist prefers are the standard tools used to look for arthritic inflammation. CT Scans and Nuclear Bone Scans are not considered accurate diagnostic tools for this disease. Your Pain Management Physician may be correct in saying that your problem is inflammation, but CT scans do not prove that. The fact that you have not had a good response to NSAIDs and prednisone would lead a Rheumatologist to order other testing to "prove" inflammation. Rheumatologists are also trained to detect inflammation by feel (edema, warmth, etc.) Pain Management docs do not generally have that expertise. You need a Rheumatologist to diagnose or rule out Spondyloarthropathy.





Not Me Too!
Re: Please help! Looking for your input!
iviary #240418 09/13/12 04:21 AM
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Mary,

i am sure your new Rheumatologist agrees with your diagnosis because of all the other factors you mentioned. According to the experts (ASAS - again),
"Scintigraphy (nuclear bone scan) has been used for many decades for the detection for active inflammation in patients with SpA, but no longer plays a role in diagnosis and management of patients with SpA because of limited sensitivity and specificity13 and has been replaced by MRI."
When we asked about the value of a Nuclear Bone Scan for one of our kids, the Pediatric Rheumatologist told us that bone scans were too broad. He explained that "hot spots" could indicate anything from arthritis to cancer to trauma to infection. There was a time period that Nuclear Bone Scans were used - but not so much anymore.


Not Me Too!
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