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possible fibro..advice for a newbie?

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Posted 2/22/2013 10:28 PM (GMT 0)
Hi all,
I am new to fibro site, but not this site all together..I am currently in hospital, and a surgeon suggested that I may have fibro.. so I guess my question to you guys is, 1~ what should I ask him? 2~ What can I expect? 3~ what do you find to be the most helpful in control of your symptoms?
Posted 2/23/2013 1:44 AM (GMT 0)
Make sure to read the fibro 101 sticky thread at the top of the forum.
Fibro is different for everyone as well as types of treatment that work for us.
For me Gabapentin, tramadol, tylenol, and heating pads help me some. It makes the pain more tolerable.
Posted 2/23/2013 8:30 AM (GMT 0)
Mrsbugzy- welcome to the fibro side! Sorry to hear that your in the hospital. I guess I would wonder why a surgeon is diagnosing you? Most people get diagnosed by an rheumatologist or internal med Dr. I would make sure you see a rheumatologist because they work with fibro patients usually. Hopefully they ruled out other diagnoses already. Fibro has similiar symptoms in other things such auto immune problems and etc. just by me going to my rheumatologist I found out I had thryoid problem, raynauds, fibro and low in vitamin D. They order test that you never heard of before.

The best advice is get a good book on fibro, read the post daily here, work on a treatment plan for yourself. I started getting great ideas from this forum and started trying new ways to control my symptoms. We have different ways to keep our fibro under control. I found out the more simple I keep it the better I get. I try to stay away from meds as much as possible. Fibromites have so many sensitivity to meds.

The best rule of thumb I have learned is do things in moderation. If I over do things or take too much on I will go into fatigue and pain. It has a learning curve for sure.

Feel free to ask questions. No question is crazy. This is a great place for support. My life has turned around from learning from this forum. I was in the hospital numerious times with so many health issues. Finally is was discovered I had fibro. I just wish I knew many years ago. I hope you haven't had to go through what I did before getting diagnosed. Hope to see you around.
Posted 2/23/2013 12:35 PM (GMT 0)
Couch and AK,
Thank you for replying to my questions.. well, to start with, a surgeon is the one questioning this because of everything that has been going on with me..
Quick medical history: hypothyroidism ( on .112 synthroid), C.O.P.D., but not on any meds for it, I had to have a colectomy with anastamosis (they had to take out large intestine, and part of small one, and a partial hysterectomy last year.), Then I got an ovarian cyst the size of a grapefruit and had to have those removed..
I have gone thru bouts of odd stuff, immune system is shot to hell, chrinic sinus problems, balance issues, arthritis in hands, legs, knees, neck, shoulders, and back.. I constantly fee like my head is to heavy for my neck and at any moment it could snap off and roll away...muscle stiffness.
about a month ago, I "turned just right" and pinched my ciatica (sp?)..and ever since then it feels like my back isn't sitting just right, and I feel like blood flow is restricted or something...in tremendous pain. The doocs thought it was another ovarian cyst, but since they can't FIND the ovary, not putting al ot of faith in that diagnosis.. lol,
So, for the last week i have been in the hospital with severe abdominal pain, dehydration, and vomiting. I have been on clear liquid diet for over a week now (as I had head cold a week before I got here)..They are finally checking for vitamin deficencies... Been trying to get that donw for a year now! (as most people with no large bowel have many deficencies..)
Last night they said I could go home today if I could tolerate solid food. Well, I did, for 5 minutes, then started vomiting again. So, now I am up, and very nauceous....and they are telling me I can go home.
They feel there is nothing they can do fo me, to see my primary..my problem with this is, I was sent here because my primary WON"T deal with any of this BECAUSE of my history..
Boy, sorry I rambled, but back to the diagnosis by a surgeon, he was suggesting it is somthing I may want to explore because of my history and because of how I feel...
So now I don't know what to do. It would seem to me like going home when you feel something is being pinched off is a very bad idea. Espeically since I live in a VERY remote area...and the "good" hospital is a 4 hour drive for me :(
So,is there something I should suggest to my medical team? Some test or something to guide us in the right direction??
Thank you so much for your support..I REALLY appreciate it..I hate being treated like I am crazy...
Posted 2/23/2013 2:06 PM (GMT 0)
Mrs. Bugzby,

Welcome to the fibromyalgia forum. I was diagnosed with fibro many years ago. I have learned a lot on how to help myself without the use of prescribed medications. My rheumatologist told me I'm medication sensitive because I found that when I took many of these meds prescribed for the differing syndromes of fibro, they didn't help me, many times they made me feel worse, and they gave me a lot of side effects. I'm still in continual pain and I have my tightness plus I do still get the occasional flare especially when I'm not listening to and taking care of my body. I have to deal with a lot of limitations but I always try to do my best and try to be positive at all times. Here's what I do:

Try and take optimal care of yourself through diet, daily light exercise, stretches, supplements, a good night's sleep, and try to keep your stress to a minimum.

Diet: My fibro symptoms become worse if I eat the wrong foods especially sugar. I feel somewhat better when I eat the right ones and I sleep better too.

Daily light exercise: To release those feel good hormones and help relieve stress, to keep yourself limber and less tight. Exercise is good for depression issues also especially those walks outdoors.

Stretches: To help deal with the tightness.

Supplements: I take a good multivitamin, krill oil, and vitamin C.

Sleep: I would have a very difficult time sleeping if it wasn't for the sleep supplements I take.

Stress: Exercise helps with this and talking with a good friend. Coming into this forum and sharing also helps.

Due to my back and neck injury along with my fibro, I have to limit how much I do. For example how long I sit and where I sit, how long I stand, how long I walk, how much I lift, and how long I socialize.

When need be I see my chiropractor who is knowledgeable about fibro and I spend the money on a neuromuscular massage therapist.

Good luck to you.
Posted 2/23/2013 9:26 PM (GMT 0)
Ask them to check you for an autoimmune disease like lupus or MTCD.
Some of your problems sound like autoimmune troubles.
Posted 2/24/2013 1:48 AM (GMT 0)
Joy,
That was my thought..some autoimmune troubles. I was sent to a rheumatologist a couple of years ago and when we were adressing my thyroid issues and the fact that 10+ years of trying to regulate it with medication to no avail, and when I had to go gluten free, my thyroid levels went back to almost normal..she told me I didn't know what I was talking about, that celiiac and thyroid issues have NOTHING to do with each other. I politely told her she was an idiot and walked out of her office.
Sorry, but when EVERY site you go to about celiac says there are very good correlations between the 2, and I am standing in front of her with the proof (all blood work results),and she tells me no, I (and years of blood work) are wrong...that doesn't cut it with me.
The Doctor today got me really upset and I was lucky enough that the nurse on duty has a heart and calmed me down..
I have been saying for day that I feel like something is pinching blood flow in my pelvis, and that my hips/pelvis area don't feel right, like they are not sitting together the right way...and then she says to me this morning, "well, it's not like you have back pain or pressure"...I have been saying all week I have pressure in my lower back....UUUGGHHHH... just feel frustrated and unlistened to. Anyway, I am calling the pain management clinic on Monday and hopfully it isn't a month before I can get in there...
Posted 2/24/2013 2:14 AM (GMT 0)
Mrsbugzy- have they checked you for systemic yeast problems? Years ago I had so many problems with yeast through my whole GI system. It all related to my fibro. Many times the dr's are not going to be able to solve all these symptoms from fibro. I found that out by many many hospitilizations myself. I wish I could give you a magic wand and the crazy symptoms would be gone. It's all about learning how to manage these symptoms. This is why I am so happy because I finally have learned how to manage this fibro. It's not perfect, but compared to what I went through it's great. Try not to get discourage and this fibro your having is real. It can get better, but you have to push through the bumps of it. I hope your stomach feels better.
Posted 2/24/2013 10:22 AM (GMT 0)
Mrs. Bugzy,

Have you ever thought of going to see a knowledgeable chiropractor, one who understands fibro, about your pain issue? Maybe things are out of alignment. My chiropractors that I've gone to see over the years have helped me a great deal. Though it's no cure, it helps. Talk to one on the phone if you decide to try that route or see if you can go for a free consultation.

Concerning the gluten free diet and celiac, yes, conventional doctors don't usually address that unless your tested for celiac. We have to sometimes take things into our own hands. If we feel better doing something, stick with it. I eat gluten free even though I haven't been tested for celiac and I feel better.

I also do the candida diet, which has to do with the yeast ak angel mentions. Sometimes we have to doctor ourselves along with doctors support of course.

Here's the link to foods to stay away from for the candida diet. This has also helped me:

http://www.thecandidadiet.com/foodstoavoid.htm

Foods to eat:

http://www.thecandidadiet.com/foodstoeat.htm

Candida symptoms:

http://www.candidamd.com/candida/symptoms.html

 

Posted 2/24/2013 5:57 PM (GMT 0)
Hi, Mrs. Bugzy, and welcome to the fibro forum.  I, too, have a total colectomy, lots of back, hip, and neck pain from ankylosing spondylitis.  I also have suspect sacroiliitis.  I had sciatic nerve pain running down my legs.  This was diagnosed by my rheumy last spring.  A muscle relaxer and ibuprofen with food has helped me a lot. 

 

Have you checked your medication?  There is a wonderful site called Drugs.com and you can look up your medications and see if any could be causing you not to be able to tolerate solid foods.  I mention this because I kept winding up in the hospital with partial bowel obstructions.  When in the hospital they didn't give me my medications, I would get better, and they told me to start my medications again when I was released.  Sure enough I was back in the hospital with the same symptoms within days.

I went through so many tests, CAT scans, x-rays, etc.  After being released one time I had to go back for an upper GI.  I felt soooo much better for a couple of days after that test.  (Turns out I was dehydrated but all that stuff that I had to drink hydrated me!)  I had to see my surgeon for the results and when they took my blood pressure it was 62/30!  They didn't know how I was even walking. 

It turns out it was my blood pressure medication causing all of my problems.  I was on a medication and a diuretic.  The diuretic was making me dehydrated and the blood pressure med made my BP too low.  I stopped both one day when I nearly passed out and couldn't breathe.  I called my doctor, he saw me, and my BP was now 74/62...wonderful BP without medication.  I had lost a lot of weight but no one checked the meds.

So, I think I would check your medication.  It's a good place to start.  Sometimes we can have reactions to things that we've taken for years. 

I do hope you find your answers.  This is horrible to go through.  I was afraid to eat at first.

As others have mentioned, do read Fibro 101...the first thread on the forum.  There are links to good information about fibro and you will learn a lot there. 

I'm looking forward to getting to know you better.  Don't hesitate to ask questions because we are here to help you.  Hope to hear more from you soon.

Sherrine 

Posted 2/24/2013 7:03 PM (GMT 0)
Welcome and sorryto have to meet you like this!

Could be serious flare up of the ankolosing sponditlitis (or however you spell it). Make sure they check for auto-immune. And get PM in there asap.

One thing I learned when sis was in hospital at end with leukemia is that specialists don't always have a foundation in other issues. She had to insist PM come in, because the oncologists had no understanding of fibro. It makes sense, we go to the docs for their speciality. They cannot be these magic know-everything dudes. It is frustrating, though, when there are lots of things wrong, and the generalist knowledge isn't there.
It does sound as if you need more pain remediation that you currently have. Iam sorry to hear of your troubles.
Posted 2/25/2013 10:06 PM (GMT 0)
Thank you all so much for your input... that was the highlight of my day..
Unfortunately, when I started making phone calls this morning, my Primary is on vacation for a week, and the pain managment clinic won't make me an appt. until they get a referral from her, and even then they are booking into JUNE!!!!
SO unhappy at this point.. as when they released me from the hospital they gave me enough pain meds (hydromorphone) for 2 days :( and phenergan and zophran for nausea.
So, where do I start? I have been doing nothing but trying to sleep for 2 days, but been waking up every 5 minutes gagging and throwing up from post nasal drip I can't get under control..
So, I am going to read the thread and find some info on how to get started.
As for other medications I am on .112 Synthroid, spiriva, and advair, for COPD, and nasal myst for allergies. I am supposed to go for another endoscopy to see if I have a bleeding ulcer.
When I feel better I am going to start walking again. I was doing 5 miles a day with no problem..now I can't do 5 feet withou wnating to pass out :(
IS all of this stuff normal? The stiff neck, the jaw pain, the shoulder tension..the back out of whack stuff???? Can't wait to see what else is in store..
Stomach is still in turmoil, solids are not friends right now..but I am working on it. Slow but sure.
I will definatly come back daily and get more ideas.. THanks!
Posted 3/1/2013 7:41 AM (GMT 0)
mrsbugzy,

i can relate to many of your symptoms. Have you ever been tested for Lyme disease? The tests aren't always very accurate, but its worth a shot. I was told by a Rheumatologist I have Fibro, then he told me i tested positive for Lyme Disease, that I needed more tests to determine the proper course of treatment. After more tests he said I was negaive for Lyme disease, but I had researched it and it made so much sense. All of my strange symptoms matched. There's a Lyme Disease forum on here as well, they are great. They helped me find a Lyme Specialist who I saw recently and he ran more tests. I am still waiting for those results, but he started treating me for Lyme in the meantime (based on my symptoms). I'm sorry you have to wait so long to get meds. Its very frustrating! I'm currently waiting for my referral to a pain specialist. in the meantime, I'm just not functioning much, and it isn't pleasant, to say the least. If your pain gets to be too much again go back to the ER and let them know your dilemma. Perhaps they can help you with a prescription until your doctor gets back in town. Good luck, I hope you sort things out and find some relief soon!
Posted 3/1/2013 7:53 AM (GMT 0)
Lymer,
Well, I got in to see my primarys fill-in :-) or so I thought..
Here is my new problem: The hlspital they are associated with does not believe in hydromorphone (or so she says)..and I find this funny since I was just admitted there for 3 days and that is what they gave me for pain rolleyes
and she said there wasn't anything they could do for me until I get to the pain clinic..but she would call them and get me in as quick as possible...
So I really don't know what to do now! She told me to stop the medication, but my pain levels are running around an 8 consistently..so not really seeing how that is possible right now. I am only taking 2 mgs. every hours with 500 mgs of tylenol..it is taking off the VERY edge of the pain, and I don't wnat to rip anyone's head off, but I am not all hugs and kisses either...
I guess I am just going to have to deal until I can get in somewhere..
She did give me a list of names of psychiatrists to call.. does anyone else see them? Are they really that helpful in dealing? confused
Just seems like a lot to absorb right now...and here I thought this year was going to be so much better...not happening yet sad
Posted 3/1/2013 8:07 AM (GMT 0)
I just had a similar issue, I went to the ER with abdominal swelling and pain, and the ER dr prescribed diazepam to get me through until I saw my Rheum again, she said herself "if these help
you have your rheumatologist continue the prescription". When I mentioned it to him he said no way, too addictive. Even though he's prescribed numerous other meds that are considered addictive as well, and I've yet to have any issues with that.

It's so frustrating, for those of us who have limited options as to what meds we can take, to find something that actually works but then get denied! I feel like screaming at doctors sometimes. They have no idea what it's like to live with chronic pain.

I haven't seen a psychiatrist, but I've seen a million different kinds of dr's, maybe I should give that a shot too. I just can't find the time or energy to make it to all of these darn appointments!
Posted 3/3/2013 11:29 AM (GMT 0)
Angel, what are systemic yeast infections? I have always had trouble with yeast infections..vaginally, and under my stomach flap from my c-section. Sometimes I feel like the pillsbury dough-girl! hhahahahaha, oh well..
Lymer, so what can we do? How do you handle it when they don't give you the meds that work?
I just don't know anymore.. what I do know is I can't keep functioning on 45 minutes of sleep a night, and the pain in my gut is debilitating..and on top of it all, we babysat our sick grandbabies this week, and now hubby, I and our 10 year old all have stuff shooting out both ends :(
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