6 replies to this topic

[beth01]

I was just diagnosed with Fibro today and was wondering what kind of meds others are taking to control the pain and what you do otherwise to help with the pain?  My GP told me two months ago he thought this was my problem and started me on Nabumetone twice a day and my GI has me taking dicyclomine also to help with the muscle pains and spasms but I really don't want to be on the Nabumetone  too long since it is really hard on the stomach and I don't want that!  My Rheumy told me that he has read my chart and saw that I have had "classic" symptoms of Fibro for eight years but I have been reading about it and sitting here wondering if it isn't all Celiac which the Rheumy told me he didn't think one had anything to do with the other.

 

Thanks in advance.

[HavaneseMom]

Hi Beth,
I do believe that many of us here have been diagnosed with fibromyalgia. I have been told I have fibromyalgia a handful of times, but I don't accept it as diagnosis for myself and won't take any meds for it. That is just a decision I made for myself, that is right for me though. I feel like it is a diagnosis similar to what many of us have been given for IBS, when we really had Celiac all along.

I do believe that the aches and pains are celiac related for me. I'm not sure how they couldn't be, especially for people who have gone undiagnosed for a very long time like us. Our bodies have had lots and lots of inflammation over the years and need time to recover and heal.

I am about 6 months ahead of you in my recovery process and am starting to have some pain free days here and there. I can't take ibuprofen or anti-inflammatories due to still having a super sensitive gut, so I can't recommend anything in that area. I know I feel much better when I am moving around throughout the day. My days of major pain usually follow a day at the office sitting at my desk in one spot, so I try to keep moving as much as possible. That is really the only thing that helps my pain, to just keep moving around and keep my muscles warm.

I am curious though to know if you are seeing any relief from the meds you were prescribed? Hope you feel better soon.

[GF Lover]

Hi Beth.  As HM said, many of us had that diagnosis for many years.  It's like the IBS Umbrella of symptoms, the Docs treat the symptoms but never get to the cause.  I went down the medication path for Fibro years ago.  In my opinion, it's a path you don't want to follow.  The Docs can try many different pain relievers, anti inflammatories, muscle relaxers etc.  Your nambumetone is Ibuprofen in a higher dose than OTC.  There are many types of muscle relaxers, if one doesn't give you relief a different one may.  For a pain reliever, I would suggest Tramodol. It is non-addictive.  Use the meds sparingly and only as needed.  They don't build up in your system.  Gabapentin may also offer pain relief and is relatively benign.  Dosing can range between 500 mg to 4000 mg so tough to dose.  Also for surface skin pain you can try Voltaren Gel, it's a bit pricey but an option.  I think some now are taking that Lyrica but it has too many side effects IMO.  A lot of Docs will throw in an anti depressant.  I guess they think suffering daily with pain will make you sad....duh...lol.

 

Like I said, I hope the meds will only be temporary for you as all symptoms usually resolve after a gluten-free diet is started.  Fibro is often time considered an AI like disease so that means inflammation is causing many of the symptoms.  Once a Celiac quiets down the immune system many aches and pains go away.  It does seem like Fibro attaches itself to AI Diseases and getting them under control takes care of all kinds of stuff.  

 

For myself, the Fibro stuff and the gut stuff were the first things to resolve.  And a gluten mistake may bring all that stuff back temporarily.  This is why many of us RARELY get glutened.  And we are very careful.

 

As they say, this too shall pass, hopefully.  Be careful with the meds and think temporary and dosing "as needed".

 

Good Luck Beth.

 

Colleen

[IrishHeart]

Heard the fibro word back in the 90's. Dismissed it. I felt I did not fit the symptom profile at all. Heard it again in 2004. One pain management doc, in a 5 minute consult poked me in a  few places and said 'you have fibro. sorry... there's no treatment for that.". Another doctor told me "it doesn't exist"

 

Neither my rheumatologist , my PCP nor I thought it was right. (I do have OA so the joint pain made sense. but the muscle weakness, loss of muscle mass and knotty muscles--hard as rocks? that was all celiac) 

 

Doctors ASSume all muscular pain is "fibro". Most doctors think this is a dead-end wastebasket diagnosis.

 

They throw all sorts of drugs at it (docs say tramadol is not addictive, sure, okay...just be careful when you try to stop it--wean off it slowly)

using anti-depressants for fibro and IBs--totally wrong. If someone is not in need of seratonin reuptake inhibitors, all hell breaks loose. this may actually lead to depression symptoms and insomnia. Lyrica is a crap drug that causes more symptoms than it relieves (in those who have told me they tried it anyway) 

 

Most muscle and joint pain IS in fact, related to celiac damage (vitamin deficiencies, etc)

 

Please don't buy into the fibro Dx entirely. I have come a long way in healing, I went to physical and massage therapy, worked with a physio-weight trainer and have regained the ability to do yoga, walk, swim and ride a bike. I still have some pain, yes, but my muscles took the brunt of the damage from decades of undiagnosed celiac. I never give up..

 

At DX, I could barely walk and it hurt just to have clothes on or to lay down. I sizzled with nerve pain.

 

Please be very careful with drugs that mess with your stomach. The last thing you need is to irritate your Gi tract any further.

 

I take no meds (sure, I'd love to be able to take a magic bullet to stop the pain) and I move constantly so my muscles can become reconditioned.

 

Fibro is poorly understood, but I did see an article that says they know the cause of it. This is good news for true fibro sufferers--as it may lead to a cure. 

 

http://www.healthlin...omyalgia-062113

 

Be patient with the healing process. I can't tell you how many people (women in particular) I know who were given this fibro DX---only to discover it was gluten and celiac all along causing that pain.

[beth01]

Thanks you guys.  I have been thinking a lot about this and I am starting to think the doctor is full of BS.  The nabumitone I started two months ago because I was having a lot of pain, nothing would work. I started to feel better after about a week, I had to tweak with the dosing. My doctor had me taking a large dose once a day so I took one in the morning and one at night.  Towards the end of the month I noticed when I was about two hours away from my next dose the pain would kick up a considerable notch so I called to see if they could give me anything else and they ended up giving me the dicyclomine which helped get it manageable.  Now they are starting to lose their effectiveness and I am in more pain again.  I have already been taking an anti-depressant, I was having a really hard time around my diagnosis so I started Wellbutrin but that isn't one they usually prescribe for fibro. I would just like to get the pain to a manageable level, I can't hardly function at all right now between the pain and the dizziness.  My blood pressure has been running pretty low lately and I have to be really careful when I get up from either laying or sitting down if I don't want to face plant into the floor. I hate to be whiney but it seems like I feel a whole lot worse now than I did six months ago.  I was working a full time job where I lifted anywhere from 1,000 pounds to over 10,000 pounds in a night, one 55 pound bag at a time.  Of course I could only handle that for six months but I did it.  I thought that was why I was losing weight like crazy lol, until I quit and sat at home for two months straight doing nothing and lost 40 pounds.  I know my health has declined since then so I should expect to feel worse, it's just frustrating.  Ok, whine over. I am getting my labs done next month so I will know how affective the supplements have been but I am not expecting a miracle there since I know that takes time too.  Hopefully they are at least a little better so I can be assured that I am doing a pretty decent job.  I know stress doesn't help either and we are in the midst of moving so that is adding to it too.  But after the sale of my home I am going to be splurging on all new kitchen ware so I know everything is safe.  I am very excited about that!  I already went online and made a pretty hefty wish list lol. I am also going to go and get a membership to the YMCA and go swimming, they have water aerobics there a few times a week. It's a little on the depressing side to not have a job right now and depending on my boyfriend so much.  He is great though and very supportive, I am lucky to have him. After the house sells we will have a nice cushion so that will be a huge weight lifted.  I know there is a guy that wants to come and look at it and is really interested so I am keeping my fingers crossed.

 

Thanks again you guys.  I know it has to be frustrating to you guys to keep reassuring us newbies that we just need time and to be patient. We all know it, just can't accept it

[IrishHeart]

It's not frustrating for me at all to reassure you, Beth. I get it,. I really do. 

I was often frustrated with my slow progress the first year and half. But it happened.

I kept a list of all my symptoms and each time one resolved, I crossed it off. It made me feel better to see it on paper, i guess.

 

Stress does not help anyone with AI diseases because it causes inflammatory cytokines. I am not just making that up 

so yes, you have to find ways to expend that stress and anxiety that comes with being in pain and frustrated.

 

Talk walks, walk around the pool if exercise is too much right now. get rest,  You can't feel bad about not working---you are recovering

from a disease that has tapped you out. I used to feel bad too, but then I realized that it wasn't my fault. I was too sick to work, I could not even lift a damn can of soup back then... and i wasn't just

slacking off. 

 

Every day is a healing day. As trite as that sounds, it's just the plain truth of recovering from celiac.

Hang in there. 

[HavaneseMom]

Hi Beth,

I am sorry to hear you are having such a rough time. It is so hard to be patient waiting to see improvement when you are trying so hard to do everything right. I'm not sure if this will be helpful, but I saw very little improvement during my first 6 months or so gluten free. I was very frustrated, then one Sunday morning I woke up and the gnawing stomach pain I had every day for the past five years was gone! I have had more improvements recently too. My brain fog and fatigue are finally lifting and I feel present in my life, instead of like a zombie all of the time. I am just getting back to working regular hours at my job too, and I have been gluten free for almost 10 months. You are still very early in the healing process, so try to stay positive and hopeful. Some of us take a while longer than others to feel better. Most of the improvement I have seen was just in the last 4 months.

I love Irish's idea to make a list of symptoms and cross them off as they improve. I wish I would have done that. You will feel encouraged once you get to cross something off of your list. I have read about how great people feel 2 years post diagnosis when symptoms have healed and it has been so encouraging.

Back to the fibro diagnosis - one other thing I try to do for my pain is full body stretching. I really like this set of DVD's:
http://www.amazon.co...m am pm stretch
Just be careful not to over stretch. I have done that before trying to work out a tight area and end up having a flare up, so I just stretch to a comfortable point and all is fine.
I also have found that if I wear light weight supportive athletic shoes around the house that my pain is better than if I am just wearing socks. I don't like to wear my outdoor shoes in the house, so I have a pair of New Balance shoes I wear inside when I am doing housework and moving around.
I always joke with my husband that these are not things that a 41 year old should have to do, but whatever works :-)