Saw the pain specialist
#302836 - 03/22/07 12:52 PM
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michele
Reged: 06/02/03
Posts: 6886
Loc: southeastern michigan
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I am still working on photos from my trip to Mexico and will post them soon!!
Today though, was back to reality. I spent 5 (yes FIVE) hours at the pain clinic. My appt was at 9:45, got there at 9:30, the doc didn't see me until almost noon! But, than she spent 2.5 hours with me.
Let me start by saying I just don't know what to think. First of all, the office is more like a spa, on the new patient forms they ask if you are interested in botox, skin treatments and other cosmetic stuff. This pain specialist was recommended to me by my rheumy doc.
She has a western medicine degree, but practices very eastern medicine. Ok, I'm cool with that. She did a FULL medical history and exam. My hands are killing me so to keep this relatively short, the jist is-----yes, she also agrees that I have sero negative, ra, fibro, ibs, polyrheumatica arthritis, neuropathy----all things I have been told before.
She also says my adrenal systems, lymphatic system and liver are shut down. My pupils no longer respond to light, I am a bit jaundice, I have a systemic yeast infection, my chi is blocked(??), I have pelvic floor something or other---a few others things I can't remember at the moment.
She says the swelling in my limbs is being caused by myofascial muscle con stricture something, something something----basically all my muscles are constricted so tightly that blood can not flow, the tendons and ligaments are being damaged and the waste that your cells produce can not be carried away. Ok, makes sense.
She had no comment at the moment on the causes of the miscarriages.
She is drawing more blood tomorrow after fasting, didn't exactly understand all of what its for but a more intensive thyroid and sugar test, hormones, I guess a lot more but I can't think clearly right now.
I will see this special physical therapist next Wednesday who treats this sort of thing. After the blood work comes back, I will start a two month treatment course for the yeast and IV infusions to supplement the organ failure and whatever hormones and vits I am low on.
She is checking to see if she can get the insurance to pay for acupuncture and massage therapy. I am not exactly sure on what the treatments are going to be at the moment. She wants me to stop working and apply for disability but I explained to her that I can not afford to stop working, let alone stop working AND pay for these treatments.
My head is spinning, I am hurting and just can't stop crying. I just have no more energy to deal with this or anything else for that matter. Can I just run away to Mexico forever and pretend this is not my life???
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I'm fairly new to the Living Room here, been on the Diet board for awhile, though. I'm trying to catch up on what everyone has going on with them BESIDES IBS! From reading this post, it sounds like you have had a really rough time; I'm so sorry that you have to go through so much pain. How do you feel about the specialist you saw? What impression did she give you? Was she really focusing on you and what you had to say, or did you feel like she was just rambling off standard questions? Are you going to go ahead with the treatments? Does she think she can really help you?
Sorry for all the questions! Just wanted to say I've been reading your posts for a little while now, and have been thinking about you! I hope you find relief soon.
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Lisa, IBS-C (Vegan)
Stable since July 2007!
Mommy to Rhiannon Marie (Dec. 13, 2008)
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Thanks! My impression was that she WAS listening to me, which is not a small thing I have discovered when it comes to any sort of doctor! I do believe in what she has to say, mainly because I have already done and tried everything else and nothing has worked. She is focused on the whole body and not just a specific body part, like most of the doctors I see.
She says I have a lot of things wrong, which i already knew-she does believe she can help me but that it will take at least 6 months. I will go forward with the special physical therapy and other treatments. I figure I have nothing to lose and as long as I can continue to pay my bills, I see no reason not to try it. 
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Reality is vastly overrated. Seriously, Michele, I'm sorry this is so hard. I can certainly understand your wanting to run away and if I knew how you could do it I'd tell you. Unfortunately, I haven't figured out any way to do that.
As for what the pain doctor has to say, I'd be skeptical but I'd probably be leaning toward giving it a try. Considering how miserable you are and how little help more conventional medical approaches have been, it would be hard not to.
However, if you have a Family Practice doctor or a General Practice doctor or a general Internist you trust, I'd get paperwork from the pain doctor on exactly what she says is wrong with you and sit down with that trusted doctor and see what he or she says about all this.
I don't know much about the adrenal or lymphatic systems, but if she's saying your liver is shut down in the Western medicine sense (rather than the traditional Chinese medicine sense) that's pretty serious stuff and should certainly have shown up on your blood tests.
And, yes, the botox and other cosmetic stuff would make me a little uncertain also. However, it does seem that an awful lot of doctors are offering cosmetic sidelines. I think it's because those are good money-makers since they aren't usually covered by insurance and therefore the doctors aren't forced to charge whatever the insurance company allows. Even my dentist - whom I adore - has gotten really big into the whole teeth whitening thing.
I'd say proceed but with caution and a second opinion. Once the pain doctor and the therapist decide on exactly what treatments you need, see if they'll give you some idea how many treatments and whether you can definitely expect to see results and in what time frame.
Take care.
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[Research tells us fourteen out of any ten individuals likes chocolate. - Sandra Boynton]
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Wow!! No wonder you are crying - that is a lot of information!!
I've been doing some more research myself and finding alternative therapies - including the Naturopathic dr. I interviewed with - the stuff about your liver completely makes sense! Your body is so full of prescriptions and illness that it is too much! No wonder you are swelling and having muscle difficulty. As soon as I started to read your post it was like a cloud being taken from in front of my eyes. It's not just 1 thing, it's everything that is attacking your body, and your liver is taking a brunt of it!
I sure hope that you are able to have some relief with the physio and the treatments that are recommended. I'm going to research some more about what I have been lately - IV therapy, liver detoxifying, etc - and see if it is also suggested for your conditions. I'll try and let you know.
Take care of you! I know, this is OVERWHELMING!!!! HUGE HUGS!!!!!!!!!!!
I wish you could escape back to Mexico too, but maybe this dr. is on the right track!
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Cassandra
Live like there's no tomorrow. Love like you've never loved before.
IBS A 20+ years, Chronic Migraines, Chiari Malformation (decompressed June 22, 2010), Brachial Neuritis, and ??? the list just keeps growing, but I'm still shiny side up! 
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I was just wondering if you had thought about trying Michael Mahoney's hypnotherapy CD for chronic pain?? His IBS program has worked such wonders for me, and I'm sure his other programs are great too. Just a thought!
Glad to hear you got some "good vibes" from this doctor. But I like what Sand said about discussing all of what the pain doctor talked about with your GP. I say give it a shot, especially since it sounds like traditional western medicine hasn't been much help.
EVERY DAY I want to just run away to the Caribbean and forget everything. I wish there was really a way to do that. 
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Lisa, IBS-C (Vegan)
Stable since July 2007!
Mommy to Rhiannon Marie (Dec. 13, 2008)
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Hey, Michele:
First of all, {{{gentle hugs}}}.
I've got to tell you, I LOVE doctors who do the East-meets-West thing, so I would really encourage you to give this a try. In my case, I had been having premenstrual spotting for almost 18 months. I saw an acupuncturist, and she stopped it within three or four months, not to mention that I got pregnant on only our second month trying. Now, you have a lot more going on physically, but I would try it for at least three months and see what happens. I know money is tight, so hopefully she can get your insurance to cover it. If your insurance won't, you can probably negotiate with her for a lower rate.
Eastern medicine is about kind of healing your body/stimulating your organs to get them to do what they're supposed to do, whereas Western medicine is more about covering the symptom. So, in theory, Eastern medicine could go a long way to healing what's broken.
Try not to get stressed about it, but do see if you can find a way to give this a try.
{{{more gentle hugs}}}
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Christine
Those who can do; those who want it done better teach.
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2.5 hours that is great she spent that much time with you but also a lot of new info to take in.....+ what you already knew going in.
I agree with Sand..... the Botox etc is just like teeth whitening at my dentist too... something else to try and make some fast cash on....(I was a sucker...LOL)
Your poor liver..... but man does that ever make sense....!!
Yes, see if you can get insurance to pay for acupuncture and massage therapy....I'm sure it could help you in someway....
So the yeast.... is all over inside your whole system? Reason? Too many antibiotics, foods with yeast, stress, etc etc???? Treatment? Just a change in diet or more meds? Any idea? (think I could add another question mark?) hehehe
I sure wish I could help you escape to Mexico or somewhere where you can just spend your time in warm salt water and not hurt 24/7....
{{{hugs}}}
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www.facebook.com/shell.marr
www.myspace.com/shellmarr
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So much for you to digest. I vote for giving it a try. So far, nothing else has seemed to work much, so what's to lose? I also like the East meets West type of doctors. I hope this works for you.
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If you're not dead, you've still got time.
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I hope it works for you! I love east meets west docs too.. miss my doc who moved to CA almost 2 years ago now... but I like my DO now... but she isn't as nontraditional thinking as Dr March was...
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Dietetics Student (anticipating RD exam in Aug 2010)
IBS - A
Dairy Allergic
Fructose and MSG intollerant
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Oh my goddness honey, I had no idea you were in such bad shape. I don't even know what to say. I'll pray for you. Maybe something will work out where you can get on disability & pay for treatment, you never know. I really hope things start looking up for you. My heart goes out to you.
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Kiwi
IBS-C
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I am not 100% sure what causes the whole yeast thing. Over a year ago, I was on antibiotics for 1 month for an old infection but I am not sure if that is related. I have read the steroids,(been on them since last June) which weaken the immune system, can promote yeast growth. Over the last 9 months or so, I have had just about as many vaginal yeast infections, which I had only ever had one before in my life, back when I was a teen! Also, when they did stool samples this past fall, it showed the over growth of yeast. My blood is now coming back with overgrown as well.
Speaking of blood, I started the day off pretty crappy  I got to the drs office for my fasting blood draw at 8:45, its just supposed to take a few minutes right? I KNOW I am a hard stick but after 9 pokes, apparently I passed out for 15 minutes!!!!!! I guess they had to put oxygen on me and were about the call an ambulance when I came to.
All my veins blew, I am welted, black and blue and can't lift my arms. They had actually even tried the underside of my wrist and omg does that hurt now.
They were insistent on me going to the hospital but I refused. I didn't get out of that office until 20 minutes after 10 and my boss had tried to call me 3 times thinking I was in an accident or something.
So, here I sit at work, the boss in, patients scheduled all day, still bleeding from a few spots, weak, tired and feeling like absolute butt. I am so glad its Friday. Did I mention that they never got the blood they needed so I have to go back Monday??!!!!!!
Really, can I just go back to mexico????? PLEEAASSSEEEEEEE??????
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I asked this morning and they are still checking into my insurance but otherwise the initial visit is $90 and subsequent visits $70, if I cut out all extra spending, I can probably swing that for a while. I might as well give it a try, I am so tired of pills and more pills!!
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I know my liver enzymes were up on my last blood draw and I know I FEEL toxic. I am going to try and cut out even more of the drugs I am on but its a slow process. I haven't had time to do any real research into this yet so please let me know what you find! Thanks!
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Re:Thanks sand
#302939 - 03/23/07 09:20 AM
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michele
Reged: 06/02/03
Posts: 6886
Loc: southeastern michigan
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I am a bit skeptical as well but NOTHING else has worked and I have continued to get worse over the last 3 years. My liver enzymes were three times the normal limit when I had them checked a couple of weeks before vacation. The rheumy said it was left over from the methotrexate injections I was doing-they ARE known to be toxic and wreck the liver. You can see in the whites of my eyes, that they look yellow and even though I am very tan at the moment, my skin is yellowish. I do just plain feel toxic from the past few years of drugs, drugs and more drugs.
I see the neuro doc next week and my rheumy the week after, so I will go over the treatments with them. As long as they agree they will not hurt anything, I think I will try them. Nothing to lose at this point.
I like the "reality is vastly overrated!" Soo true! 
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I do have the ibs hypno tapes and did them a couple of years ago. I have also tried a few other hypno cd's geared towards autoimmune illness.
So, where in the Caribbean do you want to go? St Lucia is really beautiful!!
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I appreciate all the support. Forgive me for not replying to everyone, I had a rough morning. Check out my yeast and today's update post..........
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Quote:
Really, can I just go back to mexico????? PLEEAASSSEEEEEEE??????
You poor thing...... {{hugs}}
Here is a little Mexico for ya!
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www.facebook.com/shell.marr
www.myspace.com/shellmarr
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Ohh, can you hang a hammock from that tree Shell???
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Quote:
Ohh, can you hang a hammock from that tree Shell???
Here ya go!
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www.facebook.com/shell.marr
www.myspace.com/shellmarr
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I hope it will all turn out ok for you Michele!!
I heard there are special diets for Yeast. I have had a lot of vaginal yeast infections too, so they made sure i didnt have it in my bowels too but i was told they have special diets where especially sugar and mushrooms have to be avoided at all costs. Maybe you can find some more online about it.
Take care!
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Thanks! Yes, the diet is basically avoiding sugars and refined carbs, not exactly the most ibs friendly!! 
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Oh, hun, I'm sorry. Big HUGS comin' your way.
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***********************
If you're not dead, you've still got time.
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No, definitely isn't... soon there be nothing left to eat..  Hope they find another way to cure it for you!
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An overgrowth of yeast can be caused by antibiotics, stress over a prolonged period of time, lowering of immune system, for some people birth control pills, foods that are high in sugars for example breads, pastas. It may not have been one specific thing that caused your systemic yeast problem, but a combination of things.
I really hope you start to feel better soon. Most times I read what your going through and I usually don't reply because I have no advice to give but I just wanted to say hang in there and be strong.
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Hi Michele, I am sure that an overgrowth of yeast is in part to your birth control pill for 15 years...(I think that's how long you were on them) Antibiotics, and bc pills really imbalance us. Try googling Christiane Northrup (MD) she uses alot of eastern philosophies within her allopathic education. Chi is Chinese for energy...
I am trying acupuncture next week--for the first time. I will let you know how it is...not bad for someone with a phobia of needles. Apparently it doesn't hurt. Eastern medicine tend to look at humans as "wholes" rather than parts as Western medicine. If you haven't examined this before, I think you have a good chance at better health. The yeast diet takes a while...esp. if you have had the overgrowth for quite some time. Dr Northrup has some good readings and explanations of symptoms, diet etc. I encourage you to check it out. I am rooting for you, girl!
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Amy
IBS-A
Stable and thankful!
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Hey Michele! I too am being treated for yeast, both the short cycle kind and the long lasting kind (sorry don't have my blood results in front of me so I can't tell you the exact names!).
When most women see "positive for yeast" on a test, they automatically think, "Oh no I have a yeast infection." This is not the case-- yeast can be present in the blood without it manifesting in a crotch-itching, oh no i have to get cream and a plunger infection. Yeast is present in the blood, and when it gets over normal levels it affects your digestive system and other systems. Like in my fibro clinic, I'm guessing your pain management clinic is looking to treat everything in your tests that come back out of whack.
I'm not on the no sugar diet (it's a really tough one to be on!). But I am taking diflucan 200 mgs (flucanizole 200 mgs, generic) for 4 months.
One of these pills knocks out a yeast infection (down there), and I'm taking 120 of them! Do your research and find a pharmacy that sells them cheap. For thirty (30) pills the GENERIC flucanizole 200 mgs costs:
$412.16 at Giant pharmacy (no i am not kidding about this price)
$320 at CVS
$260 at Eckerd
and only $36 at Walmart. (??!?!)
Yeah, I couldn't believe it too.  I think they are used to sell these pills one at a time, at like $30 per pill, but these are ridiculous prices for people like me with no insurance (or even no prescription plan).
I know you have insurance and know this stuff about yeast in the blood, but I wanted to post the information just in case someone else needed it. I called around to find out the prices after paying $260 at Eckerd one month for flucanizole. I was mortified to find I'd made a huge, costly mistake.
~nelly~
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Michele,
You are right. Antibiotics can be a main culprit of yeast overgrowth. The antibiotics kill all bacteria, good and bad, so your gut is left with nothing protecting it. Also, steroids can cause a fungal overgrowth as well as birth control pills. Sometimes it takes months, even years to manifest itself with symtpoms. The diflucan, or nystatin prescription drugs are useful. They are antifungal drugs. If you want to try something natural, I suggest olive leaf extract, capryllic acid, or oil of oregano. A health food store would probably tell you the best choice. I take capryllic acid or olive leaf, myself. As well, if you really want to get rid of it, you should eliminate sugar and grains for awhile because they just feed the yeast. Sorry you are not well. It is a tough go, but hopefully your doctor will be able to help you with a prescription. Be prepared though, as you wipe out the yeast overgrowth, you could experience flu-like symptoms for a couple of days, known as a Herxheimer Response. Best to you...
Kim
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Michele
#303073 - 03/25/07 07:45 AM
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Toady
Reged: 04/06/06
Posts: 1299
Loc: A small city, Northwestern Ontario, Canada
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I'll send you an email with the links to info I've found, this way not to steer the board in an unwanted direction.
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Cassandra
Live like there's no tomorrow. Love like you've never loved before.
IBS A 20+ years, Chronic Migraines, Chiari Malformation (decompressed June 22, 2010), Brachial Neuritis, and ??? the list just keeps growing, but I'm still shiny side up!
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Thanks Kim, the doc warned me I am probably in for a couple of bad months trying to get everything straightened out.
I have taken a diflucan pill and used the cream when it manifests in my crotch but apparently, once we get my blood work done, she will give me a script for an older medication, I forgot the name of it now though! LOL!! Two more sticks today and still bo blood sample. Trying the hospital tomorrow morning!
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Thanks Gracie, I think its the steroids. I am in the process of weaning off them but it takes a long time, down to 5 mg at the moment. I started to modify my diet over the weekend!
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Isn't it just crazy the difference is prices. I found that when shopping for the lowest price on my bc pills!! I have taken a bunch of the generic diflucan and it clears up the crotch rot but it is still showing way high in my stool and blood.
Once my veins get stable enough, I will be getting the vitamin infusions like you were getting. They can't even get blood out though right now, let alone a bag full of stuff in!
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I doubt I will every make a complete sugar free diet but I am working on reducing the amount. I won't be left with much to eat as I am not a veggie fan, fruits bother tummy, can't do dairy. I guess I will be eating a lot of boiled chicken and whole wheat pasta??!!
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Thanks Lumiere! Be sure to let me know how the accupuncture goes!! I have also heard it doesn't hurt. Yes, I was on bc pills for 15 years, than stopped for a few but was on hormones for fertility and I am now back on bc pills because the medications I have to take would cause extreme birth defects if I were to get pregnant. Personally, I think its the steroids causing most of the problems but I am slowly getting off those but it will probably be another couple of months to wean off them fully.
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LOL! Reminds me of a story-- the girl next to me at the fibro clinic got the same IV bag I did. She was rejoicing when the nurse found a vein on the third stick, and said so. I was flabbergasted, not by what she'd said, but the mere fact I'd said the EXACT same thing earlier.
I turned to my mom and said softly, "I'm in the right place." Now I can't afford the treatments, but last year when I was getting them, it was nice to talk to the people around me, hear their stories, and get rehydrated all at the same time.
Sometimes, if the bag's going too quickly, you might get a little nauseous. Just lean over and adjust the dial on the line to slow it down. The bad feeling'll go right away.
~nelly~
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OMG, I am just so done. I spent another 2.5 hours at the lab. Heating blankets, another 4 sticks, I am literally black and blue from shoulders to fingers. I have a swelled up lump on the back of my hand the size of an egg, can't bend either arm for the bruising and swelling. Every time they hit a vein, it would blow.
They wanted 17 vials of blood, that would have beaten my old record of 13 vials. They ended up with 9. I am so tired, so weak, have had D, can't keep anything down and in pain. I am too weak to even cry.
There is no way they will even be able to do an iv transfusion on me anytime soon unless they put in a central line and with me being immune compromised, the risks are great. I so need to be home in bed. Can't even type anymore.
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That sounds awful, Michele!! I'm so sorry. Can I ask what all this is for??
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Lisa, IBS-C (Vegan)
Stable since July 2007!
Mommy to Rhiannon Marie (Dec. 13, 2008)
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The list of blood tests was huge, I remember some sort of lymphoma and a few other cancer markers, all the vitamins-they think i am very vitamin deficient-anemia, some advanced thyroid tests since all other thyroid tests come back ok, inflammtion markers, something to do with the level of yeast in my system, diabetes-since I have neuropathy so bad, IGA, IGM-some sort of infectious thing, clotting disorders, full hormone level, fsh, on and on. A lot of this stuff has been tested at one point or another over the past few years but apparently these things don't always show up at first. The lab girl called me and said they should be able to make due with what blood they did get but if the treatments are going to be iv infusions, how the heck do they think they are going to do that????? I am just soooo tired and weak and hurting. I feel the fight is leaving me, I just want to sleep but can't sleep because I can't get comfortable enough because everything hurts.
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Wow... I didn't know what neuropathy was until I just now looked it up. That sounds awful! How long have you been suffering from this? Any idea how it started? What are the IV fusion treatments and what are they supposed to help with?
Sorry for all the questions... Just tell me if I'm being too nosy. 
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Lisa, IBS-C (Vegan)
Stable since July 2007!
Mommy to Rhiannon Marie (Dec. 13, 2008)
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Nope, not nosy!
I had severe RSD, reflex sympathetic dystrophy in my left ankle 3 years ago after a fall and a bad sprained ankle. This is a nasty type of sympathetic dystrophy and may have attributed to my current problems. Apparently, once having any sort of neuropathy, you are more prone to other types of neuropathy. Since I have immune illnesses, it also makes me more prone to neuropathy. It is most severe in both hands and feet and it is progressing towards the trunk of my body, thus they cal it a progressive neuropathy. Its an awful, relenting pain.
Apparently, my adrenal glands are exhausted and since my body is so toxic, they want to flush it out with vitamins and other nutrients, not exactly sure on the whole thing yet but will keep you posted as I learn more.
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You poor thing! That must be very hard to deal with day to day. All the things that the pain specialist mentioned that were wrong: are they all related somehow? I sure hope the "flushing" works! Sometimes I wish I could somehow flush out all the toxins that must be present in my body, but I'm sure I'd totally destroy any IBS stability I have in the process.
Do you think the IBS is related to any of your other issues? Feel better soon!
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Lisa, IBS-C (Vegan)
Stable since July 2007!
Mommy to Rhiannon Marie (Dec. 13, 2008)
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My IBS started when I was 14 or so, I am 36. Other than ibs, I was relatively healthy until about 3 years ago. Pretty much everything I have is ai (autoimmune) related or neuropathy related. They are now understanding that your immune system and gi tract are very much interconnected. My x-rays show a lot of joint damage already from the ra, its amazing how fast this crap can progress!
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well, you're obviously a very strong young woman!! Thanks for answering all of my questions. I sure hope this new doctor can help you find some relief! I'll be anxious to hear how it all goes.
Hugs!!!
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Lisa, IBS-C (Vegan)
Stable since July 2007!
Mommy to Rhiannon Marie (Dec. 13, 2008)
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The back of your hand?? That's rough. I stil; feel the last time I had a stick in the back of my hand, and it was years ago.
I had to get 30 vials drawn the first visit at the fibro center. I wouldn't have gotten through it if I couldn't squeeze my mom's hand and look away. The worst part is when the awful tech keep saying "the blood just keeps on stopping flowing. Can you do anything to get it started again?" (???!??!!!!)
{{{{{{{{{{HUGS}}}}}}}}}}}} sweetie. I'm wishing you a warm comfy spot and a sugary drink. Annex all the pillows and put your head under the covers to get some you time. And remember to breathe.
~nelly~
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I have to try and keep this short, my hands are killing me. Basically the results from my EMG I had over a month ago with the needle conduction test, showed that I do have a mild, progressive sensory neuropathy. However, the test results do not support my symptoms and physical findings of extreme pain and swelling. Many more symptoms but that is what she was checking for.....
We went around and around, she says I have to give it more time, I tell her I can not live like this any longer. She says the gabapentin can take months just to get the dose right and I have only been on it a couple of months. Its not helping at all!!
She says my problems are ai related, go back to rheumy. Rheumy has sent me to all these other doctors because she can't help me!!!! Neurologist says some sort of soft, connective tissue disease-go back to rheumy. Agrees that my current rheumy is the best in town (also the second one I have seen.)
Says she can not help at all with the pain, I have to give it more time. Not acceptable to me and she gets upset with me for not listening to her. I repeat back to her, she doesn't know whats wrong, my symptoms do not support her findings and she can only treat the symptoms and it may take months, if ever. She says yes. I again, say not acceptable. Around and around we go.
We agreed that it may be time to go to the Cleveland Clinic. Its the biggest, diagnosing type of hospital near me. So, I see the rheumy April 12, if she doesn't have anything further to add, I am asking to be referred to the Cleveland clinic.
She agrees acupuncture may help but didn't agree with anything else the pain specialist had said. I will continue to go to the pain specialist until I get in at the Cleveland Clinic. Whats it going to hurt?
Speaking of pain clinic, time to go for my physical therapy consult with the specialist. Lets hope this appt goes better!
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Taking it one day at a time.....
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I'm so sorry you're still in so much pain, Michele!! But kudos to you for sticking up for yourself and telling them what you want! That takes guts. I sure hope you get some answers (and some relief) soon!!
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Lisa, IBS-C (Vegan)
Stable since July 2007!
Mommy to Rhiannon Marie (Dec. 13, 2008)
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Hi Michele, I read your updates often and my heart really goes out to you. Not many people could handle the pain you are going through. Somehow you do it while supporting everyone else on the boards. I work at a satellite office for the Cleveland Clinic - therapy for kids. It's an awesome hospital and if you end up making the trip I wish you the best. I wish someone had an answer for you already! Hang in there.
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Michele,
I am sorry that these docs cannot seem to help you. You really must still have some fight left in you if you were able to stand up to the doctor and argue like that. I hope you get your referral to the Cleveland Clinic soon. I am wondering what the doctors ever said about prophyria (not sure I remember the spelling)? You googled it and said it seemed to fit in many ways. If you get the Discovery Health Channel, they play this episode of Mystery ER several times a week. Maybe you could watch and see how well it parallels your situation. It seems they have covered everything it could possibly be and the treatments do not work. Are they thinking it's a rare disease at this point? I am praying and hoping the best for you. Please continue to update.
Laura
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So sorry to hear this Michele. How frustrating it must be to have to go in circles with these doctors. You would think that someone could help. I hope you get the referral. Maybe they will be able to help. Until then know that I'm praying for you. Hang in there. You are such a strong woman. I admire you.
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~Mary
Had surgery for rectal prolapse in Sept. '06 and feeling good now! Loving life with our IVF miracle #1.
 
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Re: PT update
#303484 - 03/29/07 09:09 AM
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michele
Reged: 06/02/03
Posts: 6886
Loc: southeastern michigan
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Mt hands are toast and I have to go see the acupunctrist but I copied this from my ra support group board.
Thanks everyone. I started off on the Lycra. I took it for about 6 weeks, started on a lower dose and went up. It was so expensive though and they said the gab was pretty much the same thing and MUCH cheaper. So, I have been on the nerve drugs since the first of the year. They make me dizzy, nauseous and completely out of it. I did start taking the gab again yesterday and I feel even worse today.
I am just out of the will to fight. I have been sick for three years without a solid dx. I have lost 5 babies. I have lost friends. My marriage is suffering. I have NO sex drive at all.
I was and am still trying to be hopeful for this new pain clinic. It hasn't gotten off to a very good start though. The first day I waited over 3 hours for my appt. They can't start any meds or iv infusions until the blood work comes back and just getting the blood took 3 days, 4 people, 12 pokes, passing out for 15 minutes, oxygen, my body is just so frail.
I was than hopeful for the new physical therapy (pt). I asked them how their pt was different from every other pt places I have gone to. They said the therapist was from Canada and they believe in treating the whole body and not just body parts. That the therapist spent the whole time, hands on with you instead of passing you off to an assistant. Ok, sounds good.
Went to my appt last night. After waiting 30 minutes, talking to others in the waiting room. I find out that THREE people had the same appt time I had with the same therapist!!!!!!!!! He turned out to be very kind, foreign, a bit hard to understand, but was very honest. He said that it seems, for whatever reason, that I have MANY, many different muscle con-strictures thought out my body. That is PROBABLY (he is guessing) what is causing the pain and swelling.
He wrapped me in some heat and left me laying on the hard table for 30 minutes, not comfortable at all. Than he spent about 5 minutes pressing on the con-strictures in my right arm. I have to say it hurt like hell! He said that because the muscles have constricted so much they have torn and caused fibrous tissues to form and they have to break up the fibrous tissues and that it is going to hurt.
My arm feels bruised today but I have to say I do have a tiny but more range of motion in my wrist and hand. He only is in that office wed and fri and I can not take time off on fri so I made an appt for next wed. I just hope that he actually has time to spend with me or I see no point in continuing to take time off work for it.
I do see the acupuncture person today in one hour. I was told that I should be able to tell if the acupuncture is working with in six visits. Ok. I will give it 6 visits with an open mind. I should be able to get those in before my 4-12 appt with the rheumy. If I have not gotten any improvement or a more solid dx, than I am going to fight to go to the Cleveland clinic.
I am so depressed. I see a zillion doctors, they all agree something is wrong but no one can even tell me WHAT is wrong, let along fix it. My mother has similar problems and is pretty much bed ridden, she is 55. Her problems started about the same age I am now. I look at her and I just can not imagine my life being like that in 20 years. If that's the case, I don't want life. The pain is too much, the depression is too much. The lack of proper dx after so many years and so many doctors makes me think I am insane. They have the technology to clone a person for crying out loud but they can not tell me why I am so sick??!!!
I am not asking to run a marathon. I am willing to do whatever treatments they think will help, to take whatever toxic drugs they throw at me, to do whatever alternative treatments. WHATEVER, I will do it. But I have to start seeing some improvement. I just can not go on like this much longer.
I will post an update when I get back from the acupuncturist.
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Taking it one day at a time.....
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Re: PT update
#303486 - 03/29/07 09:19 AM
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Nelly
Reged: 08/06/04
Posts: 4381
Loc: Within stray mortar fire of DC
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Have you ever been tested for gout? There was that show on Discovery Health, and the guy had gout. First he was tested and it was dismissed, then he was treated for RA unsuccessfully for years, then he was tested again and had gout. (Sorry, fibro moment, I'll be more articulate tomorrow.)
~nelly~
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Michele, I don't think anyone would blame you for feeling the way you do; you've been through SO much suffering. I wish there was some way I could help you! Just know that I'm thinking about you, and sending good thoughts your way.
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Lisa, IBS-C (Vegan)
Stable since July 2007!
Mommy to Rhiannon Marie (Dec. 13, 2008)
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Well, I have to say it hurt more than I thought. Remember, I give myself shots and don't have needle issues but some of those really hurt!
The woman who did it is actually Chinese (not meant to be politically incorrect)and very kind. We talked for a bit than she started sticking the needles in. Started with my head, those didn't hurt, a few in my forehead, those were uncomfortable. Up and down my arms and shoulders, not to bad. Several in both hands and those just HURT, not sure if that's because of my other "issues" or just what. Up and down my legs, ok, fine. In my feet and ankles and a few of those were rather uncomfortable as well. Than, she pulls my pants down a bit and sticks 4 or 5 in my lower abdomen, not sure I liked those either.
She put on a warming lamp, some nice soothing music and told me to nap and not move. Ok, sure. ZZZZZZ. Oh no, my tummy starts making those really loud noises and my whole insides start feeling odd, like they were moving around in there. I panic and think what do I do if I have to go potty???????
Luckily, I didn't have to go but the whole time my tummy and innards were making all sorts of noise. I felt warm, tingly, sort of a zapping sensation at various body parts over the course of the 20 minutes I laid there.
Its been 2 hours or so and I still feel off. I feel dizzy, shaky, off balance and totally out of it. Lets hope that means its working!
I talked to the front desk girl and explained I was a little upset about the amount of time the physical therapist spent with me last night and she apologized and said there was a scheduling error. We made appts for the next month and I watched her block off an hour of time for me with the therapist. We also made appts for me to start the massage therapy, which sounds absolutely wonderful. So, Wednesdays I will go there at 4, get my massage therapy and than do pt at 5.
We also made appts for the acupuncture for every Thursday. I plan to continue it even though it hurt and I feel weird. I am trying to stay positive that it will work!
Ok, feeling very fuzzy.........Lets hope that's a sign its working!
Nelly, will double check the gout thing! Thanks!
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Taking it one day at a time.....
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Re: lj
#303511 - 03/29/07 12:34 PM
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michele
Reged: 06/02/03
Posts: 6886
Loc: southeastern michigan
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I did ask both the neuro and the pain doc about that and they said if I can tan (just went to mexico and tanned) then I can't possibly have it. Although I read there are types of it that don't affect your skin like that so I really don't know what to think?!
They all seem to think some sort of auto immune and connective tissue disease and they are pretty sure about the serum negative ra dx but there is obviously something in addition to that as well.
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Taking it one day at a time.....
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Re: Debby
#303512 - 03/29/07 12:37 PM
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michele
Reged: 06/02/03
Posts: 6886
Loc: southeastern michigan
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Thank you for the kind words. I will have to remember you live there so if we decide to go there, hopefully you can help us with directions and maybe suggest a place to stay. I live in Royal Oak, which is northern Detroit suburb.
Do you know how the clinic works? Would they keep me there until they run everything they need and get answers? Or would it be just like regular doctors appts?
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Taking it one day at a time.....
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Acupuncture has always been something I wanted to try, but I'm not sure I could do it on my front side!! I could use something for my achin', achin' back tho.
Let me know about the gout test-- the way they know you have it is uric acid present in the bloodstream. It's overlooked in young patients, and can come and go. It leads to painful swelling, "cottage cheese" cartilage buildups in the joints, and general joint pain that doesn't respond to pain relievers.
I was also going to ask you if you had protein present in your urine. That is a kidney thing and also something I saw recently on TV...
~nelly~
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Apparently they do the needles along your meridians, where the chi is supposed to flow. I think even if you do it for your back, they would probably stick your front!
Uric acid, I will go through my blood work (I have copies of it all) and see. I wrote it down and if not will ask the rheumy on the 12th.
The last urine test I had was back in the fall and it was ok than. However, the new pain doc did say my kidney's weren't right.....
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Taking it one day at a time.....
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I feel you're so close to finding out what's up. They must be missing something they've tested for before. I'm hoping you find another piece of the puzzle that's missing!
I've almost never had anything but a "normal" test, and it's frustrated me all my life. I actually celebrate when they find anything wrong with me... That's gotta be so weird to normal people!!! No one with pain should have to sit and wonder WTF is wrong!! (!!!)
{{{{{{{{{{{{{{{{HUGS}}}}}}}}}}}}}}}}}}
~nelly~
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Well, glad to know I am not the only one that hopes for abnormal test results! I know that's not the way to look at it but darn it, I just want to know what is wrong. Actually, if they could make me feel better, I don't care what the hell they call it!!!!
I am really willing to do just about anything. Frog leg under the bed? Voodoo dolls? Shave me head, most of my hair has fallen out anyways? Hell, I'd run around naked in the rain signing at the top of my lungs playing a banjo if I thought it would help!!! I guess though if I could actually do the above for mentioned act, I would definitely be feeling much better than I am now!
I am so wrong at the moment!!!! Is it possible my body released toxins after the acupuncture therapy? I feel like I am tripping!!!!!!! That might have been a good feeling when I was 20 but well, not so good now, especially at work!!!!
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Taking it one day at a time.....
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your posts sound so down, Michelle, I am so sorry to read that.. I wish there was something I could do.. I can definitely invite you guys over here if you're up to it, but me going ANYWHERE is going to be a bit- I pulled a stitch in my foot overdoing things on Tues, and I am now off my feet until NEXT Thurs.. except for potty runs, etc.. its driving me nuts.. I can't imagine going through what you are I'm having such problems with this.. but then again I have severe ADD and have no patience for sitting still- never have.. I've always done something else while watching tv, etc..
Amie
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Dietetics Student (anticipating RD exam in Aug 2010)
IBS - A
Dairy Allergic
Fructose and MSG intollerant
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Is this normal, to feel this totally out of it after acupuncture????? I mean, I see something, I read it, it does not even register, let alone process!!! Can't think in complete sentences or thoughts. Seeing trails and colors. At work, afraid to drive home. Pretty, shiny, oh, nothing is there. I am losing it. Did one of those needles pierce my brain? Furry thing running around, oh, its my dog. Can't drink water, runs down face as if lips are numb. I am at work, am I supposed to be doing something??? How am I going to get home? I am soo wrong.
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Taking it one day at a time.....
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Michele,
(((((Hugs)))))
My heart absolutely breaks for you. I applaud your courage to speak your pain, yet I am so sad that you're experiencing it. Please do not give up!
Re: acupuncture-- The first few sessions might actually aggravate some of your symptoms, but then they should start to improve. In my experience, it took more like eight to ten sessions, but hopefully you'll see improvement within your six session time frame.
I sometimes felt a little spacey or tired afterward, but not quite what you're describing. That's what makes me think it's the initial aggravating of conditions before things improve. At least you can tell it's having an impact, right?
(((((Hugs)))))
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Christine
Those who can do; those who want it done better teach.
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Wow, some kind of a reaction!! I don't know if it is good or bad though!! I have heard of people experiencing euphoria after hypnosis and acupuncture, but not spacey, out-of-it. A friend of mine did hypnosis for weight loss and they told her not to make any major decisions or purchases for up to 8 hours after a session. Maybe acu has the same kind of effect.
I sure hope this works. You have no idea how many times I wish for a cure for you everyday! We may only be site-pals, but seeing what you go through is nearly unbearable as a distant friend, you amaze me everyday that you are still toughing it out.
Sorry the physio wasn't more beneficial. I found my pt very helpful, but I don't have 1 - 100th of the pain you experience.
Just reading back - you mom is ill too? Has anyone ever looked at you and your mom's dna or chromosomes to see if they can find a link? Just a thought.
Hope you made it home safely, and have a good night's sleep.
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Cassandra
Live like there's no tomorrow. Love like you've never loved before.
IBS A 20+ years, Chronic Migraines, Chiari Malformation (decompressed June 22, 2010), Brachial Neuritis, and ??? the list just keeps growing, but I'm still shiny side up!
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You poor darlin', I wish you could run back to Mexico, too, and just soak in that warm water everyday. It seems like all of the poking and prodding and testing just makes things worse for you. What do you think would happen if you just quit doing all of it?
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***********************
If you're not dead, you've still got time.
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Quote:
A friend of mine did hypnosis for weight loss and they told her not to make any major decisions or purchases for up to 8 hours after a session.
That seems kinda weird to me. I always feel very grounded and clear headed after hypno. I know that's only my reaction to it and everyone's different but it seems strange that they would say that. I can see it being a problem if a person doesn't come entirely out of a hypnotic state, but you can easily pull yourself out of that state, even in the middle of hypno.
Hmmm...interesting.
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***********************
If you're not dead, you've still got time.
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Acu reaction
#303563 - 03/29/07 06:49 PM
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Nelly
Reged: 08/06/04
Posts: 4381
Loc: Within stray mortar fire of DC
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The needles could have stimulated your sympathetic nerve response, which will make your pain meds work harder. I think you're having a reaction to your pain meds.
I get like this if I've had a particularily painful bout of D. It makes my vicodin kick in harder, which gives me what sounds exactly like what you're going through!! Good luck, and I hope you get a chance to chill tonight..
~nelly~
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My prayers are with you Michelle!
Debbie IBS-C
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Re: PT update
#303599 - 03/30/07 07:36 AM
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michele
Reged: 06/02/03
Posts: 6886
Loc: southeastern michigan
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Well, I tried the ignore it, it'll go away approach and well, it doesn't so while the poking and prodding does make me hurt worse I hope its getting me closer to a dx and a fix.
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Taking it one day at a time.....
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Re: Chrisitine
#303600 - 03/30/07 07:38 AM
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michele
Reged: 06/02/03
Posts: 6886
Loc: southeastern michigan
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That's how I was thinking of it, at least it is doing SOMETHING. I will admit I was very skeptical so I am happy that I felt something. I will also admit I feel better today than I have the past few days. I also went to bed at 7:30 last night!
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Taking it one day at a time.....
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Re:Toady
#303601 - 03/30/07 07:43 AM
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michele
Reged: 06/02/03
Posts: 6886
Loc: southeastern michigan
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Thanks for the kind words. Yes, my mom is very ill. We have similar issues. I did have my dna check as well as Will when we were going through the fertility "stuff." I am supposedly a chromosomally healthy person. My mom has never had hers checked that I know of.
She has several suspected dx's but nothing firm either. The same seronegative ra, fibro, polyrheumatica arthritis, she also has Lyme's which they have tested me for several times. Nothing really seems to help her either and it just makes it that much harder for me to deal with because I don't want to spend the rest of my life lie I am and end up like her.
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Taking it one day at a time.....
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That would make sense but since I had it done at 12:30, I hadn't taken my afternoon pain pills!!!!! I had taken my usual 2 vics at 8am but didn't take anything else until I went to bed at 7:30 last night.
I must admit I was very skeptical but it definitely did do something and I do feel a little better today than I have the past few days.
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Taking it one day at a time.....
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That's great!
#303604 - 03/30/07 08:06 AM
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Nelly
Reged: 08/06/04
Posts: 4381
Loc: Within stray mortar fire of DC
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Any improvement in energy, mood, etc. is something to celebrate!  To the good days! *clink*
~nelly~
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***********************
If you're not dead, you've still got time.
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Re:Michele
#303666 - 03/31/07 07:40 AM
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Toady
Reged: 04/06/06
Posts: 1299
Loc: A small city, Northwestern Ontario, Canada
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I wonder if they can compare your mom's and your blood to see if there is a genetic link. This is too scary! I definately hope there is a miracle out there for you. You are too young, too beautiful a person to suffer like this!
Hope the weekend treats you well and that Monday isn't too hard on you!
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Cassandra
Live like there's no tomorrow. Love like you've never loved before.
IBS A 20+ years, Chronic Migraines, Chiari Malformation (decompressed June 22, 2010), Brachial Neuritis, and ??? the list just keeps growing, but I'm still shiny side up!
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Re Weekend
#303754 - 04/02/07 08:30 AM
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michele
Reged: 06/02/03
Posts: 6886
Loc: southeastern michigan
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Well, by Friday night I was exhausted from work. Watched some tv and went to bed. I woke up at 4am with SEVERE chest pain. I recognized the pain from the gastritis I had last year but man, was it awful. I got hubby to get me some water and ended up sleeping until 5pm Saturday afternoon. When I finally got up, felt like I had swallowed battery acid. Will made me some soup and back to bed.
When I got up Sunday around 10am, I just felt sick and wore out. Stayed in pj's all day, napped and went to bed early again. So, my weekend was a bust.
I do feel a tab bit better today. I am just so ready to feel better. I have some much yard and garden work to do and I really WANT to do it but just can't. I am trying to remain hopeful that the treatments I stared will help soon. Hopefully my blood work will be in soon as well.
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Taking it one day at a time.....
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