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Posted 9/7/2013 7:47 PM (GMT 0)
smhair  Hi my name is Lainey and I am 54yrs old

I will try to make this short and sweet (yeah like that's going to happen)

I have been treated for anxiety/depression for 12 years now with Zoloft. back in March 2012 It suddenly started pooping out on me, the Zoloft that is. So everything that I started feeling I contributed to anxiety.

many months later found out I had H-pylori, got treated for that and then found I had SIBO (small intestinal bacteria overgrowth) got treated for that, then was told I have IBS and possible Fibro.

I see specialist on 18th of this month. Every checklist I have seen I hit almost every symptom smhair

My concern is that the Zoloft has not done anything at all for all of this, my p/doc wants to just keep increasing the dose, I am at 100 mgs now (always took only 50mgs)

went to accupucturist the other day and she suggested I NOT increase. possibly try weaning off it slowly with her help

I feel so sick that as a NURSE, I haven't been able to work since last Dec!!!!! I have lost 50lbs (which was a good thing, just not the way to do it)

I hurt all over, my neck shoulders, base of skull and head hurts the worst.

any help, suggestions, own testimonies would be greatly appreciated.  what should I expect from the visit with this Dr on the 18th?

Posted 9/8/2013 12:16 AM (GMT 0)
Hi Lainey,

Welcome to the forum!!!

Well, we have a list of symptoms too. It is on the first thread of the forum called "fibro 101". I think you will find that there is a whole lot of information on that thread, so please check it out. I think you may even see yourself there...

It is frustrating when two doctors want us to do different things. I took many antidepressants before I found what worked best for me.

I have pain in the same places as you. Always in my neck and shoulders. I found what is called a "bed buddy". It is a fabric tube that you heat in the microwave, wrap in a towel and put around your neck. The heat is moist and really helps to relax those tense muscles. Within the tube is usually rice or barley, so it smells good too while you are wearing it. I also found some cream called "Australian Dream". I like it because it doesn't have any smell. It doesn't smell like ben gay. It is kind of expensive but it doesn't take much to make you feel better.

I hope that you feel better soon. I am glad that you have found us. Keep posting and know that you have come to a good informative place. With lots of wonderful members.

Hugs, Karen...
Posted 9/8/2013 5:15 AM (GMT 0)
Hi, Lainie.

It does indeed feel like a maze with this health stuff sometimes: What is it? What's the right thing to do? Even after over 20 years of being diagnosed (I'm 58) I still struggle with that. But things do, mostly, start falling into place after awhile. As Karen said, you find what works for you - and it's different for all of us. That's one of the things that makes Fibro so frustrating to treat!

I think everyone would agree that it's not good to be in any one postition for too long. Stand, then sit, then walk around, etc. Some people can tolerate a lot more exercise and physical work than others, but you should never "push through the pain." That just backfires. (Easier said than done when you have a life to live! We all overdo on occasion, but we know we'll pay for it.)

I'm glad you found this forum because we are here to help. We really do care about eachother. So hope to get to know you better - have a good night.

Debbie
Posted 9/8/2013 8:08 AM (GMT 0)
Welcome laney to the forum! You landed on a great forum to learn how to manage your fibro better. Make sure your seeing a board certified rheumatologist who sees patients with fibro. There are still many Dr's out there that doesn't believe in fibro. The dr's will do numerious blood test to rule out other diagnoses. Fibro has so many similiar symptoms as other diagnoses. They look at your thyroid, lupus, arthritis, ms and so much more. Some even over CT or MRI of the brain to rule out ms.
Many do the standard test where they touch you on these certain points on you body. Most fibromites almost come off the table when touch in these areas. Some are more senstive then others.

Depression and anxiety are very common with fibro. I use to suffer from both of them. I finally figured out most of my depression was caused by the narcotics I was taking for pain. Since I change my meds the depression has lifted. I learned how to deal with anxiety through self help info and classes. It really worked. Zoloft is one of the older antidepressents. Maybe you need a changed. I take remron and I love it. It has something in it that helps you sleep too. It also helps with racing thoughts that I was having at night time. Sometime it does take time to find that right antidepressent. Wellbutrin is another good one too. I am telling you this since you mention you are a nurse. I am a retired disabled nurse. Lol

I control my pain through many things. Heat is my best friend. Massages are wonderful too as long as they know you have fibro. I was having lots of muscle spasms all over. I started taking magnesium and it made a huge difference. It does take a few weeks to see results. I also have tried numerious pain meds leading to dependency problems. So I finally heard about subutex for chronic pain. It has given my health back to me. I love this drug in how it works. Very little dependency issue and doesn't cause depression.

I have a great testimony to share with you. I came to this forum in terible shape. I started reading post daily and felt connected doing this. I learned some great treatments ideas from this forum. I learned stuff here that was never shared to me from my Dr. I just started bit by bit trying new things for symptoms I was going through. Many things you try might not work for you. We all react different to treatment and meds. It's a trial and error method way of doing it. I am happy to say I am doing well. I have good control over my fibro now.

If you do get a diagnoses of fibro just remember you can continue with life in a happy manner. You might need to make some adjustments in your work and home schedule. If you have a chance get a good book on fibro. Educate yourself as much as possible. I hope your appointment goes well and let us know.
Posted 9/8/2013 2:10 PM (GMT 0)
I am seeing someone from a place called Arthritis association, will that be where I will see a rheumatologist?
Karen, I have the "Bed Buddy", my best friend. had him around my neck all day yesterday

I guess I need to take my magnesium every night because I held off the last 2 nights trying to see if it was making my IBS worse and I woke this morning with my gut doing cartwheels and muscle twitches/jumps.

I also get this burning sensation that feels like a sunburn down my arms and back sometimes...could that be fibro related?

If you don't mind can you all tell me whether or not you take an antidepressant and which one and how it works? also do any of you take any benzos? I am so sick of feeling like a drugged up doper.

I am really in a bad way and just want to cry constantly. Off to church, which takes pretty much all I got to do that...so sad
Posted 9/8/2013 3:10 PM (GMT 0)
Yes, the burning is fibro related.

One, get diagnosed.

Two, make sure you tell rheumie about IBS issues. Quite a few of us have this problem. It means limited use of OTC painkillers.

Three, hopefully, post-diagnosis the rheumie will make helpful medication suggestions. Fibro is worst in the fist six months, until you learn your limits and your own body.

Four, good sleep habits and gentle exercise can be your best tool to moderating the condition.

Welcome to the board! You can feel better!

I would write more, but we are off for a bike ride!
Posted 9/8/2013 11:53 PM (GMT 0)
Lainey- why don't you call and see who you are seeing for your specialist. See if they are board certified in rheumatology and work with fibro patients. If they say no, I would ask if they have someone in that group that does. You don't want to waste your money and time if they don't want to believe fibro exist. As I said you will find many Dr's still shrug there nose when you mention it. It's now classified as a disability with social security disability.

As I mention before there are some great antidepressent out there. If you feel like it's not working have them change it. As I said it does take time to find what works for you. I do like Wellbutrin and remron. I would be careful with a benzo because you can come very dependent on them. I use to take them and all it did is mask my true problems.

The burning sensation you mention on your skin is common with fibromites. I don't get it too much, so I don't have an idea on what would make it better.

Please feel free to ask questions.

Post Edited (ak angel) : 9/8/2013 10:43:23 PM (GMT-6)

Posted 9/9/2013 5:27 AM (GMT 0)
I take paxil for my depression. It seems to do okay for me. I still cry over sad parts in books and tv shows though. It just shows I have a tender heart I think.
Posted 9/9/2013 6:35 AM (GMT 0)
I take ativan. It is. A benzo and it has many different usues. I. Was prescribed it to reduce my very bad bouts of vertigo from fibro. Ive been on it doe over 4 years now. I also get skin burning pain only mine will hit my body all over. It was one of my first symptoms

Hang in there. Wait for the diagnosis and take it oneday at a time :)

Nancy
Posted 9/9/2013 11:10 AM (GMT 0)
I take more medications than I care to admit, but I do take an antidepressant, pristiq. I also take Xanax and abilify. Abilify is a mood stabilizer. I don't know if any of these help with the pain or not. I take pain medication too. But the Xanax relaxes me so it helps with the pain.

For pain I take Percocet 7.5mg. It also has 325 mg of Tylenol in it. It helps me a lot. Though there are many of us that don't get pain relief from pain pills. And many who take only over the counter medications. So it is up to you what you want to try. I have pain in the morning (early) from a sore hip. I am thinking about asking for something that would last through the night, and I don't have to get up in the middle of the night to take more. I am not sure though. I hate to ask for anything else. And some pain meds are hard to sleep on. So I might let that one go for awhile.

I am glad you have a bed buddy. I have two. In the winter when it is cold, I will heat one up and put it by my feet in bed. They really com in handy. I use mine a lot especially in the winter.

I hope you are feeling better.

Take care,

Hugs, Karen....

PS  I am 54 too!!!

Posted 9/9/2013 1:38 PM (GMT 0)
Hi Lainey and welcome! I have RA, Sjogrens and Fibro. I take Celexa as an anti-depressant and for the burning pain, I take Neurontin. I have Peripheral Neuropathy and found out it also works for the burning pain you were referring to. It even worked to help with the pain when I had Shingles! I also take Lortab when needed. As everyone has stated, what works for some may not work for others.

I will have to check into the bed buddy. Right now, I am using a sock filled with rice and heat it in the microwave. It sounds similar to the bed buddy but doesn't look as nice...lol.
Posted 9/9/2013 5:20 PM (GMT 0)
 So no one takes Cymbalta or Lyrica? they seem to be the choice anti de"s fro fibro.

I did check about who I will be seeing on the 18th and she is board certified in rheumy.

I have had vertigo and bouts of off balanced feeling for years, no one has ever given me a concrete reason for this but now I think it may have been Fibro all along

Heres a new question; how many of you are able to work? I had to quit my job at a hospital (nurse) a year ago this December, and as I feel right now there is NO WAY I could work.

I take my 2 yr old grandson one day a week and on another day take my 5 month old granddaughter and that pretty much washes me out completely.

I can't even take both of them on the same day because I feel so lousy cry

don't mean to be a whining cry baby, but this is really horrible...and if it's not Fibro then what could I possibly have? smhair

Posted 9/9/2013 6:07 PM (GMT 0)
One step at a time. No borrowing trouble, and throwing good energy after empty worries.

Some people do use one of the two big fibro drugs. They work for some. Others have tried them and not found relief, or found (as I did) that the side effects were worse than the benefits. it's one of those things were each body is different.

I worked up until May, when I had to quit my job. Currently looking for another one. I believe that work is beneficial, so long as it is the right job, and the worker with fibro manages their condition as effectively as possible. That is my belief, but it is not a universal fact. others do far better with their condition not working. And, let's face it, the 'right job' is hard to find.

Hope your appointment goes well!
Posted 9/9/2013 8:16 PM (GMT 0)
I do take gabapentin which is the older version of lyrica.
It does okay for me until lately. I'm having more issues lately.

I haven't worked in over a year.
Posted 9/9/2013 8:29 PM (GMT 0)
Hi, Lainey, and welcome!  It's frightening now knowing what to do or how to handle this illness but you will figure it out.  I do not take the drugs for fibro.  I have found that over the counter meds and supplements have helped me a lot.  I don't like the side effects of the other medications but this is my personal choice.  Some members take Cymbalta or Lyrica or Savella and have good results.  It's what you are comfortable doing.

 

I take ibuprofen with food, Tylenol, magnesium malate (malic acid/magnesium) supplements, vitamin D3 supplements, and a muscle relaxer (Robaxin) to help me with pain and fatigue.  I also walk and/or swim daily as a gentle form of daily exercise and I pace myself.  I do see a massage therapist that gives gentle massages and that has helped me, also.

 

I also have a positive outlook and that has helped me immensely.  I look at all I can do and really count my blessings.  I look forward to each new day with anticipation because it could be a good day.  If it isn't, I can deal with that day.  I never project myself in the future.  Your mind can conjure up the worst case scenerios and that leads to stress, anxiety, and more pain.

 

I also work with trigger points.  I have a book I ordered from Amazon called The Trigger Point Therapy Workbook.  We have trigger points...like knots...all over our body and this book shows what trigger points are causing what pain.  My neck used to be very sore and at the base of the neck were two knots...one on each side of my spine.  I learned from the massage therapist to push on the knot as hard as you can stand it, massage the area, push again, massage again and pretty soon that knot gets smaller and smaller and the pain will lessen.  I did this with those knots and now my neck doesn't bother me often.  I also used this book to correct a frozen shoulder so it's really quite good.  If the trigger points are in my back, I use a tennis ball agains the wall to get to them.

 

Be sure to read Fibro 101...the first thread on the forum.  There are links to good info about fibro and you will learn a lot there.  Good starting links for your are called A Thorough Explanation of Fibromyalgia and What Else Could It Be.  I mention that second one since you were wondering if you had something else.  A good doctor should run you through a myriad of blood work to rule out other illnesses since there isn't a good test for fibro.  Then, if the blood work comes back normal, a diagnosis of fibromyalgia is usually given.

 

Also, in Fibro 101 you will find links about the vitamin and supplements I mentioned and how they work in your body and also a wonderful link about keeping a positive attitude when having chronic pain.  I re-read that when having one of those days.

 

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 9/10/2013 4:41 AM (GMT 0)
Lainey- you were wondering who works with fibro. I know many of them on this forum do work part and full time. I was working as a nurse and had to stop work 4 years ago. I really don't think my fibro caused me total disability. I had a severe neck injury in 2004 causing spinal cord compression. I had a 3 level fusion done. It was after that my health deteriorated. I went back to work many years after my surgery, but it was miserable. Finally I am on permanent disability. It has made my life so much better. My health improved once I was able to stay home and rest when I can. Being at home I have little stress too, so I think this is why my fibro has improved. Are you thinking about disability? I think I would rather work if I could. Too much time on my hands can be hard on the brain. Lol
Posted 10/2/2013 2:08 AM (GMT 0)
can you have fibro and have no trigger points at all?

Thx.
Posted 10/2/2013 1:28 PM (GMT 0)
Lainey,
I was diagnosed with Fibro last February and I'm still trying to find the right meds that work for me. I've tried Elavil, Lyrica, and Cymbalta & Lyrica combined. So far no luck with any of them. Now I'm working with my doctor to wean myself off the Lyrica and increase the Cymbalta dosage.

The Elavil just didn't help at all. The Lyrica at 300mg/day didn't help and I couldn't handle the side effects. Lyrica at 100mg/day and Cymbalta at 60mg/day also hasn't helped but doesn't really have any noticeable side effects. I'm hoping the higher does of Cymbalta provides some relief.

As for working, I retired after 20 yrs of active duty Air Force service in June. I really want to go back to work, but at this point don't think my body can handle it, since a simple trip to the grocery store or doctor's visit seems to be more than I can handle today. I'll re-assess that decision once I've found a treatment that works for me to keep my average daily pain on good days below a 6.

I hope you find something that works for you soon!

Have a blessed day!
Mari
Posted 10/2/2013 9:37 PM (GMT 0)
Thanks Mari, I am weaning off the Zoloft and continue to take klonopin. I will continue to see acupuncturist and pray it works.
going to a lecture tonight by an author on fibromyalgia, hope to get something out of this, will share what I hear tomorrow.
Posted 10/2/2013 9:42 PM (GMT 0)
sueg, from what I understand to have dx of fibro. pain must be unilateral and that there will be at least 11 out 18 trigger spots

This may not be up to date but my rheumy checked for those spots and YES it hurt!!!!
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