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12-07-2017, 11:07 AM   #13291
Maya142
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With her J tube, they used a tiny thin tube that sat flat - that wasn't so bad at all (though she did switch a button for her J tube too). If you know you are getting a long tube, you may want to stock up on some tape. We taped the tube in the beginning so it didn't move and make the site hurt. It depends on what kind of tube of course - some have bolsters and don't move and need to be taped, but her J tube did.

We used Hypafix tape, which is easy on the skin. Got it on Amazon.

Good luck!! I really hope you have no complications and it's an easy recovery.
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Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
12-07-2017, 11:15 AM   #13292
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MissLeopard I basically had a ton of blood tests done to rule out anything else as my Mum has Lupus, when they all came back fine I was diagnosed with M.E/CFS after 6 months of symptoms. I was 13 when I got sick and 14 when diagnosed so there might have been other things going on in the background and I have no idea what blood tests I had but I didn't have any other testing done. Now I get a lot more joint pain and with my other conditions I may have to have more testing though as they are more common in autoimmune conditions and EDS. Although I doubt it's EDS as I don't get enough points on the Beighton scale, and it's other joints that cause me problems and do funny things.
I read that there is no specific diagnostic test for CFS/ME so I thought they probably ruled everything else out. I've had unrelenting fatigue for as long as I can remember, but it's gotten worse over the last 2 years since I started working full-time. I used to be able to take naps during the day and still do on the weekends but I don't feel rested afterward. This past Saturday, for example, I had plans but had to take a "spoonie day" and basically rest because I had bad intestinal spasms the night before and felt horribly fatigued. I almost didn't go to Church on Sunday after resting a whole day because I still felt fatigued.
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12-08-2017, 08:48 PM   #13293
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I went to the chiropractor last night and got great releases in my lower back, hips, and neck (several big pops!) which helped so much! However, I woke up this morning and I slept on my right hip wrong and it must have subluxed - it was very sore. I had a doctor's appointment this morning and I was hurting just sitting in the exam room chair. I finally started stretching while waiting for the doctor and did a squat and it popped back in! It was a very loud, audible popping noise. Ever since then, it's been much better and no longer hurts.

Also, I received a reply finally from my GI's nurse and my doctor wants me to come in to discuss our next steps. I have a feeling it means either a scan or colonoscopy, but I'm not sure. I didn't hear back about scheduling today, but I hope to hear back Monday.
12-08-2017, 11:14 PM   #13294
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MissLeopard, i am glad the chiropractor was able to help.

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12-09-2017, 07:50 AM   #13295
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Maya thank you, I luckily have loads of Hypafix as it's what I use to secure my NJ, it's the only one I've not reacted to yet! I had my GI appointment yesterday and I've got to have an assessment with the specialist tube nurses before she can book me in to get the GJ placed which is a bit frustrating as she doesn't know how long it will take. It was meant to be done while I was in hospital for my last tube change but it was cancelled by the ward doctor for various reasons (there was a lot of confusion last time about whether I was having the NJ replaced or a GJ done, when they realised it was the NJ they cancelled the assessment even though my GI had requested it so this time it could just be done, she didn't make that clear enough in my notes). So I'm half expecting it to be after Christmas now which is a little annoying, I was hoping to have it done so I can really start 2018 fresh and put all these hospital admissions behind me!

MissLeopard that's right there is no definitive test, it's a diagnosis of exclusion. I hope the GI is helpful for you but I'm glad you had some relief from the chiropractor, hopefully it can tide you over until you see rheumatology.
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12-09-2017, 10:21 AM   #13296
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Hey everyone.

The past few days have been a doozy - I've been to the nurse's office several times for my oozing incision as well as my adhesive allergy which no one can seem to figure out how to handle. I have a big angry rash and we've tried every tape there is and I can't have any of them. Also every nurse keeps giving me different advice (you can shower with it, definitely don't shower without a waterproof bandage, you should change the steri strips, let the steri strips fall off, you should put tape on this for months, stop using anything on it as soon as you can etc.) it's been making me very frustrated.

Still have heartburn. That's the big one. Still have freaking heartburn. It's not as bad clearly as I can get by on half my meds, but it still feels too close to the same as how it used to feel. Trying to be patient, I know things can still change a lot. But it's frustrating and I feel burned out from pain. The past three years it's just been pain pain pain and I don't know how much more I can take.

A big issue is diet. I had planned for a bunch of soft foods to eat but with the remaining heartburn I don't tolerate as many things as I had hoped, and many of my go-tos are too solid or hard to digest still. I've mostly been living off sugar, to be honest - yogurt and ice cream and juice, and it's getting old. I'm smaller now than I was my senior year of high school, and people are commenting on it constantly. I don't mind so much, I'm still at a healthy weight, but I also can't keep losing for much longer before that stops being true.

A bit scared to try new foods as I'm worried they'll get stuck and I'll feel even more discouraged about this all. Today I was able to eat a cookie. It gave me some heartburn but the texture was okay, which is progress! This is also the first day I've been off oxycodone since the surgery which is nice. I'm SO constipated (haven't gone in 5+ days) and keep taking laxatives and they're not working, so I figured it was time to go off the meds. I'm not quite ready for it, the pain is pretty distracting, but I can handle it.

MissLeopard - I know the feeling, my shoulders often pop out of place and it can take days for them to pop back, sometimes chiropractors just make it worse because it pops back and forth more easily for a while after a session. Glad you were helped, though!
12-09-2017, 07:03 PM   #13297
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MissLeopard - I know the feeling, my shoulders often pop out of place and it can take days for them to pop back, sometimes chiropractors just make it worse because it pops back and forth more easily for a while after a session. Glad you were helped, though!
I'm actually wondering if I should stop seeing the chiropractor until I see the rheumatologist because my hip popped out again today and I had to squat in a store while shopping to pop it back in (very embarrassing, but it was making me limp!). I remember when I saw the results of a pelvic MRI I had last year that my hips didn't line up the same but you can't see them very well on an MRI, so I wouldn't be surprised if the rheumatologist orders x-rays to check the alignment and make sure I don't have arthritis. I know EDS and hip dysplasia can both cause hips to sublux/dislocate but it could be something else entirely.

Also, my mom asked me why my hips were popping out and then I told her I was seeing a rheumatologist and she was like, "How many specialists are you going to see?!?" Sometimes, I don't like to tell her stuff because she has chronic pain, too, and she has this mentality that my pain is not worse than hers - I cannot stand it when anyone makes you feel that way. It may be true, but I don't appreciate it being thrown in my face when I'm legitimately hurting. It's not fair for someone to downplay how you're feeling. I offer her support and I wish she would do the same.

Anyway, I actually had a very productive day today! For the first time in weeks, I actually had energy on the weekend to do something and didn't sleep all day from intestinal spasms or joint/muscle pain. I think I can safely say that the probiotics are working for my GI issues. I've only been taking one capsule from one bottle a night instead of the 3 different capsules. It's been working a lot better, too, which is great because I no longer have nausea.
12-11-2017, 08:14 AM   #13298
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As I'm recovering from reflux surgery, some of my other GI issues are becoming apparent. Most notably my chronic constipation, which is even harder to deal with when you've recently had open abdominal surgery...

Looks like I'm going to be referred back to a "regular" GI rather than my current surgeon at least for managing the constipation long-term since too much straining on a regular basis puts a lot of strain on the reflux surgery and might shorten its longevity.

Also have to make a million calls to figure out who should really manage my recurring iron deficiency. My surgeon's office won't refer me, my GP wants a referral from my GI who I no longer see. It's a mess. I feel like I should hire a full-time assistant just to keep track of my medical stuff

Hope everyone's doing alright!
12-11-2017, 01:44 PM   #13299
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As I'm recovering from reflux surgery, some of my other GI issues are becoming apparent. Most notably my chronic constipation, which is even harder to deal with when you've recently had open abdominal surgery...

Looks like I'm going to be referred back to a "regular" GI rather than my current surgeon at least for managing the constipation long-term since too much straining on a regular basis puts a lot of strain on the reflux surgery and might shorten its longevity.

Also have to make a million calls to figure out who should really manage my recurring iron deficiency. My surgeon's office won't refer me, my GP wants a referral from my GI who I no longer see. It's a mess. I feel like I should hire a full-time assistant just to keep track of my medical stuff

Hope everyone's doing alright!
Izzie, I am so sorry to hear you are struggling to get the help you need. Do you have access to good quality probiotics? I bought some Natren at our local health food store after 2 rounds of Xifaxan messed me up - it worsened my IBS symptoms. Since taking it for a week, my BMs have become MUCH more regular and I am feeling more energized. In fact, I told my GI nurse to wait because she was going to schedule an appointment for me this week but I'm feeling so good, I think I can wait until next week. I'm still having abdominal tenderness and some cramping, but it's not near as severe. I haven't taken my Donnatal or Vicodin for GI symptoms in over a week. Surgery can certainly mess up your bacteria - I know it did for me and I only had laparascopic surgery. It's something to think about but it's up to you and possibly your doctor (probiotics are relatively safe, though).

Anyway, I finally broke down this weekend and bought myself a new memory foam mattress online. I've only ever owned an innerspring style mattress and my current one is almost 8 years old. It's a pillowtop and very worn in the middle, even after turning it several times. I think it is a big contributor to my hip pain and pain in other areas. I keep waking up with horrible pain when I lay on my right hip (which I'm seeing the rheumatologist about; bursitis suffers sometimes have to get the bursa(e) drained) and I'm tired of it (literally!). It's already been shipped from Tuft & Needle and I'm getting it on Wednesday! I cannot wait! It's a mattress that has low volatile organic compounds (VOCs) so it doesn't have to be "aired out" before using it. I read tons of reviews that said memory foam and natural latex mattresses are the best for side sleepers but I'm allergic to latex so that's a no-go. I'm really hoping this helps!
12-11-2017, 09:58 PM   #13300
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Happy dreams.
12-12-2017, 04:25 PM   #13301
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Izzie, you seriously canít catch a break! I poop way too much, and you donít poop enough, so maybe we can combine ourselves and have normal bowel movements?! I wish it worked that way. I really hope things start improving for you!

MissLeopard, we have a memory foam mattress in our guest room, and when I first slept on it, my back hurt. But once I started sleeping on it more regularly (once I got sick because itís closer to the bathroom), I started to love it. My husband said he has always liked it better than our bed. And my guests have said they like it too. So Iím guessing youíll love it, but just in case you donít love it right away, give it a few weeks. Oh, and my cats love it too!

So my test for Lyme disease actually came back positive. My doctor said that I have active Lyme disease. My test showed two different strains, and my doctor said that when those two strains are present, those people are usually extra sensitive to medications and treatment and everything. Thatís definitely true for me. Iíve been saying for years that Iím super sensitive to everything, especially medications, but I think most people just thought I was being a baby or something. Anyway, my doctor doesnít feel adequate enough to treat Lyme, so now I have to find a new doctor who treats it regularly or is an official Lyme literate doctor. How many doctors will it take to get me feeling better? The juryís still out.....

I hope everyone is doing as well as possible.
12-12-2017, 04:32 PM   #13302
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akgirl, I'm glad you've at least gotten some answers! I know Lyme can be tricky so hopefully now that you know you can get proper treatment. Definitely sympathize with needing too many darn doctors and still feeling like it's not enough...

I've started looking around for another specialist in case I need further treatment for the reflux. I'm not comfortable going back to the hospital where I had surgery - in part because they're just understaffed and underfunded and even if you have good staff present there aren't enough of them which feels very unsafe. And also because my surgeon and I have very different "styles" He's very old fashioned, he makes the decisions and doesn't discuss them with me and I'm supposed to just go along with it. I prefer a more modern approach where there's a dialogue, and that's not what he does. He's not a BAD surgeon, but to me it's a breach of trust when you don't get the full story or full explanation, and you feel that your doctor is arrogant and dismissive towards you when you have questions...

I understand that he's busy, and surgeons often have an odd demeanor, but it's just not a style of doctoring that I'm comfortable with moving forward. I also think that whole location is just tied up in post-traumatic stress and anxiety for me at this point after that horrid hospital stay.
12-12-2017, 07:07 PM   #13303
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akgirl:

I had Lyme in my peripheral nervous system about 15 years ago. Because of the location they had to put a PICC line in and I gave myself IV antibiotics every day for a month. Do you know how advanced your Lyme is? They can tell just by how many IGM and IGG bands show up as positive for Lyme. Has your doctor put you on antibiotics? You should at least start doxycycline immediately and take it for a month. Iím confused about why your regular doctor wonít treat you. Since not many doctors qualify as ďlyme literateĒ you might just want to consult infectious diseases at your nearest big hospital. Mine was treated by my neurologist and my regular GP. I really hope you can start treatment right away.

Izzie:

Definitely avoid that hospital and surgeon. Thereís no need to add to the horrible stress and anxiety from your surgery and hospitalization. But Iím sorry that means youíll have to look for a new doctor.

Miss Leopard:

Glad you are feeling so much better!
12-12-2017, 07:12 PM   #13304
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Izzie:

Definitely avoid that hospital and surgeon. Thereís no need to add to the horrible stress and anxiety from your surgery and hospitalization. But Iím sorry that means youíll have to look for a new doctor.
I have to go back for the immediate aftercare and follow up after the surgery, which feels appropriate. I will be dealing with a nurse at that appointment.

I'm moving soon anyway, about a 4 hour drive from where I live now, so staying with this doctor is not feasible for more than one reason.
12-12-2017, 07:58 PM   #13305
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Jabee, I think what I have is considered chronic Lyme. I have no idea when I contracted it, but itís likely Iíve had it for many, many years. So no one seems to be in a rush to treat me.....
A couple years ago, a doctor I was seeing actually suggested that I might have Lyme, but she never tested me for it. She turned out to be an idiot, so I stopped seeing her. But itís kind of annoying that itís taken this long for someone to test me for it. Iíve been sick for four years! I didnít do the typical western blot blood test, because I donít think thatís as accurate when it comes to a long-term chronic infection? I did a urine test, where I had to exercise beforehand to try to get the little Lyme guys out of my muscles and into my pee. Thatís my understanding anyway haha. I know Lyme is complicated, and I basically know nothing, so I guess weíll see what happens. I did call a doctorís office here who specializes in Lyme treatment. I asked if they were taking new patients, and at first the lady said no, but then after hearing that I had the positive test, she said they would be willing to take me on as a patient, but that it wouldnít be until next year. But next year will be here before we know it so thatís okay.

Izzie, I went through some tough stuff at one of the hospitals here, but it was emotional trauma, not the physical trauma you went through. I saw my mom go through some really horrible and scary things there, and thatís also where she passed. Whenever I go back to that hospital, as soon as I walk in and smell it (weird!), I almost burst into tears. Soooo the point of my story is that Iím sure you do have some kind of PTSD from your experience there. Watch out for the smell!! Ha. Hopefully you can find an awesome doctor in the new town youíll be moving to!
12-12-2017, 08:23 PM   #13306
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I would get a second opinion on the chronic Lyme. My daughter had a negative western blot test and we chose to get a second opinion from a Lyme literate doctor, despite her sister having juvenile arthritis and my husband having AS (so a strong family history of arthritis). The Lyme literate doc made us do some other test, which the CDC does not recognize, and that showed that she had Lyme.

Her pediatric rheumatologist made it clear she did not believe it was Lyme (she had already tested for it) but said it was ok to do the course of antibiotics if we really wanted to. But she wanted us to get a second opinion.

We treated her with Doxycycline and Plaquenil, she got worse, not better. Her arthritis got worse, because we didn't have her on any proper arthritis medications. And she was miserable from the abx - nauseous and had stomach pain and diarrhea.

We then saw a second and third opinion infectious disease specialists both of whom said she did not have Lyme in their opinion, talked about the negative effects of IV antibiotics (which the Lyme literate MD wanted to put her on next) and said even if she did have Lyme, it would have been treated by Doxycycline.

She was treated for her arthritis after that and we decided not to risk IV antibiotics since there wasn't much evidence that they helped at that time. She got MUCH better once we put her on a biologic for her arthritis.

She continued to have GI symptoms for years and was eventually diagnosed with Crohn's. Much later I found out that Doxycycline can trigger Crohn's in those who are susceptible. Now I really regret finding that Lyme literate MD and wish I had done more research at the time.

Obviously, every case is different but be careful .
12-13-2017, 11:00 AM   #13307
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Today has been rough, so far. I woke up with pretty bad nausea and cramping again, which led to diarrhea. I took 8mg of Zofran which stopped the nausea and diarrhea, thankfully. I've learned I cannot take the Donnatal at work because I get too groggy. Also, I was running late today and ended up walking pretty fast to the time clock. I noticed that my sacral region is pretty sore and I'm not sure why. It's a deep seated pain. I also had tendonitis issues in my left arm yesterday that are continuing today. Thankfully, I get my new mattress today, so I hope that will help. I wish I could go home.

ETA: I went to lunch and started eating and my jaw on the left side wouldn't open all the way. My TMJ is acting up. Not sure why that's happening but I think this last chiropractor visit hurt more than it helped - the after effects are worse this time. I think I'm going to have to lay off getting adjustments until I figure out what's wrong.

Last edited by MissLeopard83; 12-13-2017 at 02:08 PM.
12-13-2017, 05:22 PM   #13308
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Maya, thanks for the warning! There definitely is some controversy when it comes to chronic Lyme. Iíve heard really bad things about Doxycycline. Side effects seem to be pretty common, and Iíve heard it can even cause C. Diff. Iím honestly afraid of antibiotics, so I feel like that would be my last resort. My doctor said that since we know which strains of Lyme I have, if we did go the antibiotic route (which we donít have to, there are other options), there would be two specific ones for the specific strains I have. And I kind of donít think Doxycycline was one.....but I could be wrong. She also said that antibiotics donít cure chronic Lyme. I think a lot of doctors donít understand the difference between regular Lyme where you just got bit and chronic Lyme. But what do I know? Honestly, not much! Iíll for sure be doing tons of research before I decide what Iím going to do. Iím hoping someone will figure out how to do a Freaky Friday switch so I can just get put into someone elseís body, and someone else can get stuck with this defective thing.

MissLeopard, it sounds like youíre having such a rough day! Iím so sorry. Itís just one thing after another. All that would suck if you were at home in bed, but the fact that you have to be at work makes it a thousand times worse. Hopefully some of your symptoms will start calming down soon.
12-13-2017, 05:45 PM   #13309
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I would just get several opinions, and not just one from a Lyme Literate MD. There are a LOT of different opinions regarding Lyme and Chronic Lyme and I honestly wish we had done more research before jumping to antibiotics, particularly since my daughter had a normal western blot test. I'm now very glad we didn't do long-term IV antibiotics like that doctor was recommending.

There is some good stuff on Medscape about it.

Long-term antibiotics and other treatments for chronic Lyme disease, also called postĖLyme disease syndrome, led to septic shock, Clostridium difficile colitis, osteodiscitis, abscess, and death, according to a review of five cases reported to the Centers for Disease Control and Prevention in recent years.
"Clinicians, public health practitioners, and patients should be aware that treatments for chronic Lyme disease lack proof of effectiveness and can result in serious complications," write Natalie S. Marzec, MD, a resident in preventive medicine at the University of Colorado in Aurora, and colleagues in an article published in the June 16 issue of the Morbidity and Mortality Weekly Report.
"The term 'chronic Lyme disease' is used by some health care providers as a diagnosis for various constitutional, musculoskeletal, and neuropsychiatric symptoms," the authors write.
Although there is insufficient evidence to support the use of prolonged antibiotics, immunoglobulin therapy, or other treatments in these patients, the treatments are prescribed by some clinicians and sometimes lead to serious harm, Dr Marzec and colleagues note.
For example, a recent study reported by Medscape Medical News provides further evidence that long-term antibiotic treatment is not an effective therapy for chronic Lyme disease, despite the fact that some guidelines recommend it.
https://www.cdc.gov/mmwr/volumes/66/wr/mm6623a3.htm
12-13-2017, 09:12 PM   #13310
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MissLeopard, it sounds like youíre having such a rough day! Iím so sorry. Itís just one thing after another. All that would suck if you were at home in bed, but the fact that you have to be at work makes it a thousand times worse. Hopefully some of your symptoms will start calming down soon.
It got even worse after I posted - I'm a staffing coordinator and a nurse called out and I was unable to find a replacement. I was already feeling horrible and just wanted to go home and then had to deal with the stress of finding a nurse. I tell you, I was so tired - physically, mentally, and emotionally - by the time I left, I nearly cried while driving. My depression and anxiety are doing very well (I saw my psychiatrist yesterday and I'm doing fabulous) but my physical symptoms are really causing problems.

In other news, I am seeing my new primary doctor tomorrow! Please pray it goes well. I have to arrive 30 minutes before the appointment time and I have a lot to discuss with her. I hate that I have to change doctors but my primary is just not easy to get a hold of anymore and that doesn't look like it will change anytime soon...
12-14-2017, 06:44 PM   #13311
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Well, I have good news and bad news. I'll start with the good news first:

My appointment with the primary doctor went very well! I really like her - she listens, answers questions, and seems very knowledgeable. She wants to help me with my neck pain. I told her that I was getting pinched nerves and that the chiropractor visits only helped for a day or two and then I hurt even worse than before. Something that came to my mind is that, while he did range of motion and pressure tests, he never did an x-ray before he manipulated my neck - I mentioned this to her and a red flag went up. She put in a requisition for a cervical x-ray with side views. She thinks that I may have either osteoarthritis or degenerative disk disease. I was reading yesterday about cervical ankylosing spondylitis and wonder if that might be the cause. I also read about something called Barre-Lieou syndrome which matches all of my symptoms perfectly, but it's difficult to get a diagnosis - most doctors know it as cervicocranial syndrome and perform prolotherapy injections of dextrose to correct the disorder. I may need to see a pain management doctor if the rheumatologist is not familiar with the disorder. CCS is very similar in its presentation to whiplash injuries - but without the whiplash occurring.

So, anyways, I'm getting my neck x-rayed next week before my appointment with the rheumatologist (I got the whole day off) on Thursday and, hopefully, I will have more answers. In the meantime, the doctor prescribed me Flexaril (muscle relaxer) to hopefully allow the muscles in my neck to relax so they don't cause more pain and discomfort.

For the not-so-good news, I had a very rough day at work today which is making me rethink staying there another year. I've been there 2 years and I am going back to school next month to become a nurse, but I have to complete 3 prerequisites before I can apply to nursing school (a full-time program so I cannot work full-time). I was hoping that things would work out where I wouldn't feel like I need to leave, but the stress that I undergo on a regular basis is just not good. I don't get any support from the nursing director and I feel like they expect me to just pull a nurse or CNA out of thin air when I've exhausted all my options. I've decided to start looking at job openings again. I want to stay within the health care admin field and get either the same or higher pay than I'm getting now. Hopefully, I'll find something soon so I can give my 2 week notice.
12-14-2017, 08:01 PM   #13312
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Have fun with the flexeril. That one really works. You are essentially wasted with 10mg. No ladders or driving.
12-14-2017, 08:18 PM   #13313
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My girls take Flexeril too, at night before bed. They both started at the pediatric dose (5 mg). It can make you feel pretty groggy and exhausted the day after, so it might be best to try it on a weekend to see how you react.

They both have Ankylosing Spondylitis. When you see the rheumatologist, they will probably run a specific gene test - HLA B27. You can be HLA B27- and still have AS but MOST people with AS do have that particular gene (both my girls and husband have it).

Axial spondyloarthritis (SpA) is much more common than AS, and precedes AS. To have AS you need a certain amount of radiographic damage to the SI joints (visible on x-ray). That damage takes 7-10 years to occur, which is why being diagnosed with AS takes a long time.

Common symptoms of SpA are morning stiffness, pain that gets worse with rest and better with movement (so for example, sitting through a movie might make it worse, but a walk would make it better) and warm, red or swollen joints. Generally, the SI joints are involved first but sometimes in women the neck is involved first instead. In women, peripheral joints (joints other than the spine) are also more often involved. Really any joint can be involved, but commonly hips, ankles, heels and knees are involved, besides the SI joints and spine.

Tests would be blood work (for HLA B27, CRP, ESR), x-rays and if those are normal, then an MRI. An MRI would show inflammation, not just damage, so is needed in the earlier stages of the disease.

Degenerative disc disease and osteoarthritis are MUCH more common than AS or SpA. But just in case, I wouldn't go back to a chiropractor till you've seen a rheumatologist. They are not recommended for people with SpA.
12-15-2017, 12:01 AM   #13314
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My girls take Flexeril too, at night before bed. They both started at the pediatric dose (5 mg). It can make you feel pretty groggy and exhausted the day after, so it might be best to try it on a weekend to see how you react.

They both have Ankylosing Spondylitis. When you see the rheumatologist, they will probably run a specific gene test - HLA B27. You can be HLA B27- and still have AS but MOST people with AS do have that particular gene (both my girls and husband have it).

Axial spondyloarthritis (SpA) is much more common than AS, and precedes AS. To have AS you need a certain amount of radiographic damage to the SI joints (visible on x-ray). That damage takes 7-10 years to occur, which is why being diagnosed with AS takes a long time.

Common symptoms of SpA are morning stiffness, pain that gets worse with rest and better with movement (so for example, sitting through a movie might make it worse, but a walk would make it better) and warm, red or swollen joints. Generally, the SI joints are involved first but sometimes in women the neck is involved first instead. In women, peripheral joints (joints other than the spine) are also more often involved. Really any joint can be involved, but commonly hips, ankles, heels and knees are involved, besides the SI joints and spine.

Tests would be blood work (for HLA B27, CRP, ESR), x-rays and if those are normal, then an MRI. An MRI would show inflammation, not just damage, so is needed in the earlier stages of the disease.

Degenerative disc disease and osteoarthritis are MUCH more common than AS or SpA. But just in case, I wouldn't go back to a chiropractor till you've seen a rheumatologist. They are not recommended for people with SpA.
I appreciate the helpful information. I will not be returning to the chiropractor anytime soon, if at all. I just don't think it's worth it to get 1-2 days of neck release to feel terrible after. My sacrum was also hurting earlier this week, as well as my lower back and hips, so I want to make sure I'm doing the right thing. My grandmother and aunt both have rheumatoid arthritis and my dad has a bad back with disk issues, so I'm sure - since I take after his side of the family - that something is going on there. My CRP was up the last time it was tested (though I don't remember the exact number) but it's been a while, so I'm interested to see where it's at. My new PCP said that rheumatologists in their medical group do extensive blood work and testing for all sorts of inflammatory disorders so she didn't even order it since I'll be getting a full workup next week.

The Flexeril is pretty strong. I only took half (2.5mg) earlier this evening to see how I'd react and, about an hour later, I fell asleep.
12-15-2017, 12:36 AM   #13315
Maya142
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2.5 mg is a TINY dose, so you must be very sensitive to medications. Also check with your pharmacist if it can be cut - as far as I remember, it is not scored.

My daughters were prescribed 5 mg as 13-15 year olds. My younger one weighed 85 lbs or so, soaking wet.

It did help with sleep, because inflammation can cause muscle spasms.

Both my girls take 10 mg now, which is the adult dose. You do get used to it over time, though they are both pretty groggy during in the morning.

My older daughter works full-time though and has been taking Flexeril every night to help her sleep and get her through a particularly bad flare. She is about a 102 lbs.

RA is a totally separate disease from AS - totally different genes. The joints involved are different - usually hands and feet. If it is RA, you would usually see swelling and red and warm joints. In SpA, you may or may not see swelling/redness/warmth, depending on which joints are involved.

In RA, the SI joints are not usually involved. In fact, the spine is not usually involved except the cervical spine.

Good luck with your rheumatology appt. I hope they do some testing to figure out what is going on.
12-15-2017, 04:45 AM   #13316
Izzie
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So things are not going so great for me. Last night I had a classic "reflux attack" with intense heartburn, regurgitation and severe chest pains. This is not normal at this stage, and should not be possible after a successful surgery. I have no choice but to go in again, probably to be admitted. It looks like the surgery has failed. Either it was made too loose to start with (maybe because an inexperienced resident performed it...), it's come loose, or I have an underlying issue that's undiagnosed.

Not sure what will happen, have almost lost all hope.

Hopefully something good will come of this hospital stay.
12-15-2017, 08:59 AM   #13317
MissLeopard83
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2.5 mg is a TINY dose, so you must be very sensitive to medications. Also check with your pharmacist if it can be cut - as far as I remember, it is not scored.

My daughters were prescribed 5 mg as 13-15 year olds. My younger one weighed 85 lbs or so, soaking wet.

It did help with sleep, because inflammation can cause muscle spasms.

Both my girls take 10 mg now, which is the adult dose. You do get used to it over time, though they are both pretty groggy during in the morning.

My older daughter works full-time though and has been taking Flexeril every night to help her sleep and get her through a particularly bad flare. She is about a 102 lbs.

RA is a totally separate disease from AS - totally different genes. The joints involved are different - usually hands and feet. If it is RA, you would usually see swelling and red and warm joints. In SpA, you may or may not see swelling/redness/warmth, depending on which joints are involved.

In RA, the SI joints are not usually involved. In fact, the spine is not usually involved except the cervical spine.

Good luck with your rheumatology appt. I hope they do some testing to figure out what is going on.
Yes, I am HIGHLY sensitive to medications. I had two surgeries for ovarian cysts and benign endometrial hyperplasia. I was told the only way to help prevent further surgeries was to either get a total hysterectomy (I'm only 34) or go on hormones thru ABC. I do not handle most birth control methods well - I've tried MANY different kinds. The one I'm currently on seems to be well tolerated - Yaz (the generic form) - which I'm very thankful for. I told my new PCP that I'm sensitive to medications, that's why she recommended starting with the lowest dose first to see how I do.

I don't have any swelling or redness, so I doubt it's RA. I'm thinking it's probably plain osteoarthritis or AS - or a totally different animal. I'm just grateful to have a doctor who cares and I'm looking forward to the doctor's appointment next week so I can get some answers. My hip is very sore this morning.
12-15-2017, 03:05 PM   #13318
Jabee
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Izzie, Iím so sorry youíve had a setback. Are you already at the hospital? Did they tell you what happens now that things are bad again? I really hope you are treated better this time. Also hope they figure out what to do to give you some relief.
12-15-2017, 03:38 PM   #13319
Izzie
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Izzie, Iím so sorry youíve had a setback. Are you already at the hospital? Did they tell you what happens now that things are bad again? I really hope you are treated better this time. Also hope they figure out what to do to give you some relief.
Was in the ER for 9 hours, the surgeon came in for 2 minutes. Said the surgery has probably come undone, and it's like it was never done in the first place. I'm back on square one, it's like it was never performed. Didn't confirm with testing or anything, but he was convinced anyway. Didn't get any pain relief or help at all, wanted to increase my PPI dosage and just sent me home.

I am wrecked.

I can't go through another surgery.

The surgeon was rude and I'm not convinced he is right, but something is wrong. The only thing I got out of it was blood work that showed I don't have an infection and okay blood count.
12-15-2017, 04:15 PM   #13320
Izzie
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I'm in constant pain and literally no one will help me. I've tried the ER, I've tried my surgeon's office, I've tried every medical professional I have access to and no one will help me. I'm a complete wreck, I've never been closer to feeling like I can't go on.

If I had actually helpful medical professionals around it wouldn't be so hopeless, but I have no hope, and no energy left. I don't know what I can do at this point. I'm not sure I will make it through this.
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