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Not yet diagnosed, but so many questions...and so much pain...

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Posted 3/21/2010 3:10 AM (GMT 0)
Hi everyone.  This is my first time posting and honestly I don't know if it's even Fibro that I have...they've mentioned Fibro, lupus, MS, and I'm getting tested for Lyme next week among a multitude of other things.  I should mention I'm 26 and have Interstitial Cystitis, IBS, PFD, Vulvodynia and a bunch of other stuff.

Anyway, this year I've just gone down hill "quickly spiraling out of control" is actually how my urologist put it to my new pain management doc....and I have an appointment with a Rheumy (not until July, but the nurse said she'd get me in next week hopefully).  In any case, I just figured I know how long it took me to get my IC diagnosed, living years with the symptoms and from what I understand it's the same with Fibro - and most of the other autoimmune diseases.  I got really sick with a "sinus infection" in January, then a "UTI" in February (all in quotes because I'm not sure if that's what they really were at all), and then about a month ago just crashed in all over intense pain...my WBC spiked with a fever, vomiting, just a ton of symtpoms that fit every autoimmune (but hopefully not neurologic) disease in the book.  I see a physical therapist for my Pelvic floor dysfunction but couldn't have her work internally last time due to some injections I had so she did manual therapy on my back, neck, hips, upper legs and glutes (where I'm having the most muscle pain as well as my joints).  afterwards she said just about every area on my body lit up like a christmas tree indicating inflammation everywhere.

I have some ok days, mostly just exhausted all the time, constant headaches...but some days I have so much muscle pain it feels like I did an 8 hour work day the previous day and even my muscle relaxers, and valium and pain medicine and heat/stretching doesn't do ANYTHING. 

I know I'm just really scared so that's got my stress level up which isn't helping...but could anyone give me some insight as to whether this is what you go through in a Fibro flare?  or if you have any of the other diseases if it sounds more like one of those?

I should mention I've had 3 abdominal surgeries (adrenalectomy, appendectomy and gallbladder removal ( the last 2 just last year) so I have a lot of abdominal pain but near my right kidney which I don't know if that's even related...I really just have too many symptoms to name - just about every single symptom on the info packet to fill out for the rheumy is checked off...

I know no one can give me solid answers, but personal experience always seems to help me get through it...and I really appreciate any feedback.  Thank you all in advance :)

Posted 3/21/2010 3:28 AM (GMT 0)
Sorry you are having all of these problems... Wish we could help, but without a firm diagnosis and all the other stuff you have going on.. Whew! You sure have your hands full!

Do you feel better after a hot shower or long hot bath? That helps many of us.
The muscle pain is the thing that really stands out... and if it's fibro be prepared for not much help other than meds that help you cope but don't take all the pain away. Wish I had more to offer.

Hope you have a good rheumy appointment, but in the mean time, get all the coping info you can out of the pain management doc. If you have insurance and they wanna do a tens unit or biofeedback or stick needles in you... go for it!!! Any port in a storm and full speed ahead!
Posted 3/21/2010 3:47 AM (GMT 0)
Hi pennstate, welcome to the family! I'm sorry you are going through so much pain.
It is frustrating to hurt and not have the pain relief you need.

Getting a diagnosis is not always easy. Many of the symptoms of fibro overlap with
many other conditions. Bloodwork is usually done to rule out the connective tissue diseases, and some of us have a CTD and fibro, so it does take time.

Your rheumy will do a tender point exam. There are 18 designated tender points that
are checked, on both sides of your body above and below your waist.

Stress will cause more pain, do what you can to keep the stress down. I walk, it does
help with the stress and it helps you from getting stiff. I'm also a big believer in relaxation
therapy, deep breathing and meditation. Take long soaks in a hot bath. Heat is a fibromites
friend. Most of us use bedbuddies or heating pads.

Many people with fibro are vitamin D deficient and that can cause pain. Finding pain relief
is trial and error for most of us. we all tolerate meds differantly. I take a SNRI, Savella
daily and Cyclobenzaprine for flares.

My fibro pain is an allover achiness that I feel on a daily basis with fatigue. When I'm flaring my allover pain is feels deep and bone crushing, sometimes with needlestick

pain and tingling. Not all fibromites will descibe their pain the same way. Fatigue is

overwhelming on somedays and somedays the pain is overwhelming.

If you haven't already, check out fibro 101 on the top of page one. It is a wonderful
resource for fibromites.

It is natural to be scared when you hurt and don't have a dx. We are all here for you.
Take one day at a time. Come here often and you will find that the members are caring
and very understanding, Glad you have joined us.

Hugs, Robin

Posted 3/21/2010 4:30 AM (GMT 0)
I really appreciate your responses :) This is a really caring forum...I've been on ic-network for a while now and its so comforting to be around folks who go through it and understand. My family and boyfriend are beyond caring but sometimes try to "fix" me and push me (which is of course in their nature) but it gets frustrating :)

Heat has been my best friend for a long time now with the PFD and IC - and lately its just been all over instead of my bladder and low back...just keep rotating it around :( The baths are hard for my vulvodynia....but good for my PFD and constipation so its a toss up there. I do have a tens unit and although originally just used it for low back, glutes and bladder - I've been moving the electrodes all over the place lately! It's a big help too but a reminder that i could use it more than I have been...thanks Jeanine! Oh and I'm all about testing...at 26 I've had 6 major surgeries and more testing and poking and proding and pinching than my grandparents all combined...so I'm all for it...just tell me something!

When Neurontin didn't work for my pelvic pain over a year ago but urologist tried lyrica which for the first week worked amazing - then insurance denied it...4 times...but we tried again recently with some samples and it did nothing at all. They recently tried ultram(tramadol) to help til I see the pain doc and that helps way better with my overall pain than the vicoprofen...but not so much for my stomach ulcer...and my liver enzymes were elevated so anything tylenol related is out.

Seems like there's bad days and worse days....the bad days I can get through once the meds kick in in the morning and am just really tired when I get home from work...the worse days I'm in that "feel like I got hit like a mac truck all over" sort of pain that doesn't go away.

One thing that's hard is the sleeping....I already have a rough time with my IC - getting up at least twice during the night to pee...but since about November I'm soooooooooooo tired but just can't fall asleep! I take two benadryl which one used to knock me out in 20 minutes and now even with 2 it takes a good hour and a half....then I just can't get up in the morning!

Hopefully I'll find out soon enough...I'm just concerned that my IC is autoimmune as well so if that test shows up I won't be suprised and it won't mean anything different right away :( I'm used to no quick answers but its really starting to interfere with work and life. I'm sorry you all go through this all the time...I'm hoping something works for me :)

The vitamin D thing makes some sense too...with my other conditions I have to be so careful with my diet and lately I haven't been hungry at all and nauseous....also on Depoprovera for birth control so should be taking vitamin D supplements...they just irritate my bladder....I'll definitely have to cehck that one out.

Thanks again so much and the fibro 101 thing is so great!
Posted 3/21/2010 4:33 AM (GMT 0)
Hi Pennstate... and welcome to the Fibro Family.

Even if you find you have something else besides fibro you are more than welcome to stay here and ask and learn all you want. It's the normal routine to check you for all of the disorders you listed above if your doctor suspects fibromyalgia. They can all look so much alike so they can rule out the others with blood tests. If they all come back negative then it's likely you have fibromyalgia. At least you will know you don't have the other disorders!

Also the majority of people with fibro can relate the onset to some trauma or insult to the body. Sometimes it's the birth of a child, surgery, loss of a loved one or even a brief illness. But it does seem that if we are destined to have fibro all it takes to activate it is some sort of shock to our system. But this isn't everyone. Jeannie above has had fibro since she was born. So what's with that? This is a miserable disorder but we can and do learn to live a good and quality life. You have to work with your doc and stick with it but you do not have to give up living!

Warm hugs,
Chutz
Posted 3/21/2010 4:48 AM (GMT 0)
Gosh, you do have a lot to deal with! Just don't let anyone tell you you're crazy. Yes, I've had times of intense allover pain like you described, though mine usually radiates from my left sacroiliac joint and shoulder/neck area. I also used to get a terrible burning pain which would start in my midbackback and spread all the way around to the front - this peaked once before an appendectomy and then, years later, before my nonfunctioning gallbladder was taken out...so who knows, maybe now that you've got those out, something will improve (that pain took awhile to stop for me, too.) I just feel so bad for you! You're so young (I was too when my pain began) and it's so easy to feel that you're being punished for something, that you must be doing something wrong, that you don't dare hope for fear of being punished more....it sounds crazy, but pain will do that to you. I used to get paranoid when I was feeling really good because it usually meant I was about to get a killer migraine.

How are you sleeping? Please keep us informed and good luck with everything!
Posted 3/21/2010 5:04 AM (GMT 0)
pennstate, one more coincidence: I've also had slightly elevated liver enzymes for many years, first one and now 2, and they don't know why. I do take Darvocet (which has Tylenol) when the pain gets intense. But my doctor said no Cymbalta. Who knows why??
Posted 3/21/2010 3:39 PM (GMT 0)
Hi Debbie and Chutz - thanks so much for being so welcoming :) My biggest problem with my IC is extreme pain so I'm used to it - just more local...and since it's gotten so widespread its just very frustrating. I know I'm in for a long ride, but these boards are very helpful...i've asked a question on the lyme forum too and got some really great ideas and suggestions of things that you just cant find on the traditional info sites - its much better from folks dealing with it and going through it.

I really noticed it getting worse after my last surgery which was my appendectomy - the recovery was really difficult compared to my gallbladder surgery - probably because they were only 3 months apart and wasn't quite healed yet and just a bunch of things that went a long with it.

I know exactly what you mean about those days you actually feel good - I just want to smile and jump up and down but then it's like a knock on wood thing...just hoping it lasts. I do have some great understanding doctors thus far, so I'm hoping the pain doctor and rheumy are just as good...if not I've learned by now to keep on lookin til I find someone who is!
Posted 3/21/2010 6:10 PM (GMT 0)
Hi, Pennstate, and welcome!  You have gotten really good info already.  But, if this is fibro, it is good to keep moving.  Gentle exercise does help with the pain.  If you don't move much, you will be stiff as a board and your pain will be worse.  I walk and swim as my exercise.

 

Also, if you check out Fibro 101...the second thread on the forum, you will find some gentle exercises that really do help , too, along with a lot of other good information about fibromyalgia.  There is a list of symptoms there, too.

 

I take vitamin D 3 and that did help me with pain and fatigue.  I also take malic acid/magnesium supplements and they have helped me quite a bit with pain and fatigue.  Others on this forum have tried them and they helped them.  They don't help everyone but they are pretty inexpensive and worth a shot.  There is a link all about them in Fibro 101.

 

With all the testing they are doing, you should get a diagnosis fairly soon.  Fibro is not considered an autoimmune problem.  But, all I know is that ibuprofen really helps me a lot...and that's for inflammation.  Soooo, who knows?

 

I'm so glad you found us and joined in.  Don't hesitate to ask questions because we are here to help you.  Hope to hear more from you soon.

 

Sherrine

Ohio University ~ Yea!  smilewinkgrin

Posted 3/21/2010 11:20 PM (GMT 0)
Hi pennstate.

sorry to hear of all that you have had to endure. It is quite a bit!

I have fibromyalgia from Lyme disease. I am glad you are getting tested. My pain is all over. Muscles joints shooting pains. Some people with Lyme get no pain!! Please also research Lyme as diagnosing and treating it it can be quite controversial at times. Please ask your doc to run an Igm and IgG western blot Lyme test along with the usual ELISA testing.
Just write it down and bring teh note with you. I was negative with ELisa testing but positive on the western blot.

check out the lyme forum here at healing well, or go to www.lymenet.org for more info.
I sure hope you get the answers and relief you need!

hugs,
melissa
Posted 3/22/2010 5:22 AM (GMT 0)
Hi Pennstate!! My name is Jan. I recently found this sight and I must tell you they are wonderful!!!
I am so sorry for all you are dealing with, it is not easy. Your family is trying to help but a lot of the time you just want to say you don't understand but they think they do. The people here understand.

I have had fibro for 30 years. I was twenty at the time and all the specialists told me I was crazy. Kind of understandable as they didn't understand it back then. Don't ever give up!!! After 10 years they decided it was fibro, by that time I had had a lot of pain physically and emotionally.

Now I deal with fibro, arthritis in my hands and back, eczema, migraines, bad sinuses, and I had a heart attack in 2002. My pain is extensive and I have to be careful because of my heart as they were not able to fix. Just some background.

I agree with you about heat I am unable to take baths as it causes too much pain. So maybe this will help you. Instead of using a heating pad I have an electric blanket on my bed and an electric mattress cover, so I get heat wherever I need it. On my couch I have an electric throw blanket that I wrap myself in while watching TV, I also have a reclining couch, this all helps but exercise is very important. I can not do a lot as I can't strain my heart, but I walk around my house, go shopping, swimming and hot tub there. I lost my ability to work many years ago, but as someone here said, I read it, the more you do the more you can do.

As far as the drugs go, they work different for everyone. I took Lyrica and it was marvelous, it tool my pain away I was so happy for about 2 weeks and then I started to fall, not trip no my body crumpled like a rag doll. I had trouble getting up and it hurt lots. I went off of them and my falling stopped but my pain came back in full force +. I also have sleep apnea so the only way I can get any sleep is with medication.

Keep coming back these people will always be here for you, me too.

Best of luck, Jan.
Posted 3/22/2010 10:35 PM (GMT 0)
Thanks again for the great replies.  Went back to my PCP today and she's about 90% sure it's Fibro....she said she's been treating for over 20 years (and back then the other doc's told her she was crazy - because it was all in our heads) and she didn't take well to that :)

In any case, she's testing me for everything because she didnt' like the idea of me waiting until July to see the Rheumy either - and hasn't had great experiences with the Rheumy's treating Fibro around here apparently.  So in any case I'm finally getting a ton of bloodwork tomorrow for everything.

My only concern (and I debated starting a seperate post on this - and still may - is that I had a steroid injection for severe allergies today.  I have been reading that they are used to treat some autoimmune diseases, so I'm worried that when I have these blood tests done (for Lupus, ANA, C-reactive protien, rheumatoid factor, anti dna, etc. as well as lyme) the steroids may mess with the results?  I plan on telling the nurse who takes my blood but I'm wondering if there will be any problems....do any of you have any knowledge of this? smhair

Thanks :)  I'm just happy that I'll hopefully have some answers soon....not that I'm happy to be diagnosed with any of the above - but as I went through with IC - it's just good to know....then you can make a plan :)

 

Post Edited (pennstate71) : 3/22/2010 4:53:46 PM (GMT-6)

Posted 3/23/2010 12:17 AM (GMT 0)
I'm glad your doctor is being so thorough.  I have never seen a rheumy.  I use a board certified Internist for everything...including fibro.

 

I posted in your other thread.  I would call the doctor and make sure before you have the testing.  Nurses might not know for sure. 

 

Sherrine

Posted 3/23/2010 12:30 AM (GMT 0)
Sherrine - Thanks for your replies - that's a really good idea - I definitely should check with her first. My dad's been mentioning an internist actually because of the many different things that have been going on and that have gone on in my past...make's a lot of sense.

Oh and I also caught your Ohio State comment before, so I'm affraid we must be bitter enemies.....just kidding :) hehe
Posted 3/25/2010 1:53 PM (GMT 0)
Well...just went for my bloodwork so now it's hurry up and wait time rolleyes

i really wanted to get it earlier in the week as I hate waiting over weekends to get results!  But then again I guess its better than July so I should just stop complainingsmile

I'm still nervous that I had such a big injection of the steroid that it will mask the results, but the nurse that took my blood and the doctor both said it should be fine.  I can definitely tell the steroids are wearing off though because I'm much more sore and stiff.  I'm trying to get up and at least do my PT exercises more often but I'm not sleeping so I'm exhausted by the time I get home from work.  I need to get back on track with my sleep so I can keep awake during the day and keep moving around!

Has anyone here been on SSRI's?  My Dr. put me on Celexa as I was previously on Elavil and another type of anti-depressant for pain and I couldn't function.  Right now it's making me tired during the day and wide awake at night...like I can fall asleep but once I wake up to go to the bathroom I'm wide awake!  Antihistimines are good for me (because of my bladder) so I used to take 2 benadryl at bedtime but it was drying out my eyes too much so I'm not sure what else I can take to help me sleep.  I also get migraines so of course most of the  medicines have some sort of caffiene in them.

Anyway, thank you all for being so supportive - I'm one of those people who just wants to know either way so I'm very anxious for the results.  I'll keep you all posted!

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