Does this sound like Fibro?

[allih]

Hello... I'm trying to figure out what is wrong with me as I have been experiencing a continuing escalation in pain conditions as the last yeasr has gone on and I'm thinking it may be Fibromyalgia.

I have chronic migraines, IBS, constant pain in my shoulders, neck, elbows and hands. My mid back and ribcage hurt almost all the time. My low back and legs hurt periodically, more when it is cold. I'm always stuffy, have asthma. I have insomnia and twitch a lot before and during sleep. I'm tired and always want to lay down and rest. I have a hard time getting motivated to do anything. I also have Type 2 Bilateral Trigeminal Neuralgia.

I currently take Neurontin for the TN, Effexor and Topamax for the Migraines, and Bentyl for the IBS. I have rescue meds that I take if I get a migraine anyway but nothing much helps the other symptoms. Given my laundry list of complaints, Fibro seems to fit. Am I on the right track?

I have an appointment with my Neuro in a few days and am going to bring this up but would like to have some more info if possible.

Thank you.

Alli

[MichelleC]

Hi Alli. It does sound like fibro, which presents itself in different ways to different people. The constant back, ribcage, and arm pain could be TOS, which I think stands for Thoracic {sp?}Outlet Syndrome. I don't know much about it, but the symptoms you mentioned made me think of it.

The meds you're taking could possibly be causing some of your symptoms, or worsening them.

My neuro mentioned the possibility of fibro to me, but sent me to a rheumie for the actual diagnosis. I feel pretty foggy rigth now, but hope this quick post has helped you. I was diagnosed back in the Fall.

Good luck with the appointment.

Michelle

[BrokenBladder]

Fibro is diagnosed through a rheumy and you have to have 11 out of 18 trigger points. It's impossible to say whether your symtoms are from Fibro or not since there are so many different symptoms.
One thing I was told by my rheumy was that I also had to have had a positive ANA in my bloodwork, which I did. Fibro is usually secondary to something else so it's possible that you have something else going on and Fibro has now come along. I would imagine that you will be referred to a rheumy to determine your diagnoses.
Try not to despair. Many of us went several year before we finally got a DX.:eek: In my case it was my urologist who told me that he felt I had Fibro but that wasn't his specialty so he sent me to a rheumy. That's when I got my DX.

Take Care,

[Tootsie]

Hi Alli,
I've had fibromyalgia for almost 50 years, but am not sure that your symptoms add up to the diagnosis. Do you have allergies? How long have you had the IBS? Any history of trauma, auto accident, orthopedic surgery, etc.?

Recently, I have been reading and learning more about Gluten Sensitivity and Celiac Disease. One thing that is so very, very strange, is that frequently, neurological symptoms are the first indication. Ever since birth, my daughter has wondered, what the key was, to all the relatively mild and minor symptoms experienced by my grandson. The last 6 months, she has had him on a gluten free nutrition program. We simply do not give him any food product containing wheat. Eureka!

Much of his fatigue, lack of concentration, stomach aches, red, dry eyes, have all disappeared. There is a Forum, here at braintalk that will link you with sites giving more information about gluten sensitivity. Start reading. It is really overwhelming at first, but may give you some ideas about things to discuss with your doctors. Cheerio.

[LupusMCTD]

Allih,
I hope you get to feeling better and get down to the causeof this.

I have Lupus , Fibro, seizures, and a host of other ailments.
Wishing you luck,
Kathy

[allih]

Tootsie,

Yes I have allergies to a lot of things. I take Claritin twice a day just to keep it under control. I've had IBS my whole life. I can remember having attacks as a child that couldn't understand until I was diagnosed with IBS as an adult. It get much, much worse when I am stressed. In fact everything gets worse when I'm stressed. I've learned some really good relaxation techniques as a result.

I've also had nine various surgeries, two were orthopedic, one on my feet, one on my shoulder. The first surgery was at age 5 and the last was about 6 years ago. I also have clinical depression, which I forgot to add to my laundry list of symptoms.

Alli

[Tootsie]

Alli,
Considering all of the medical problems, it may be that more than one idea may be of help to you. Most of us who have lived with fibromyalgia for any length of time have come to rely on 3 basic things. One is some form of mild and enjoyable physical activity. Another is adequate rest and sleep, along with a well balanced healthy diet. The last is avoiding stress, learning to say "no," and learning to control those emotional triggers, that can be so disruptive to your peace of mind.

Because of your IBS, you might look into the gluten free, celiac forum here at braintalk. There is a lot of information there, and there seem to be many people who feel much better once they eliminate wheat, barley, rye from their diet. It might be worth a trial for you although it is a little mind boggling at first. I'm learning to bake bread and other things with alternative flours, for my grandson. Who said you can't teach an old dog new tricks?

Do you have access to a swimming pool? It is a good way to exercise without weight bearing and risking injury when you've had orthopedic problems. Cheerio.

[allih]

I do eat a very healthy diet. Since I have chronic migraines I cook from scratch and avoid as many chemicals as possible. With the IBS, I also avoid most wheat foods and anything that I have noticed exacerbating the IBS. I also take digestive enzymes which helps quite a bit. The one thing I do need to do is exercise more. I am very spotty about it. I go religiously for a few months and then I fall off the wagon. I really need to be more consistent on that note.

I also have learned to say no and not overdo things. I try to keep my stress levels down and stay away from people who irritate me. It's frustrating that even with what I do to try to stay as healthy as possible that I still hurt as much as I do. Today, for some reason is particularily bad. I just ache all over and it has been from the moment I woke up.

My GP referred me to a rheumetologist today so I made an appointment for a couple of weeks from now. I hope that she can give me some answers. They are getting my blood work and records from my GP so they can see what I've already been tested for. All the obvious things have come back as ok or negative. My GP is pretty sure that something else is going on as she has been treating me for years and it's just been one thing after another for so long with no obvious physical reason for why I feel so bad.

I just want to feel better or at least have a name for my misery! :)
Alli

[Tootsie]

Hi Alli,
It sounds like you have done lots of adjusting already. Now, I hope that the referral to the rheumatologist will give you some addition answers and possible a mode of treatment, therapy or medication that will help.

Try and keep up with some kind of exercise that you enjoy. I find that meeting new people at the gym where I swim helps give me motivation on those cold, rainy,windy days, when I'd rather stay in a recliner with a good book! Cheerio.

[uvamomb]

Hi, Alli, just wondering what the Rheumy said. I have never heard of having to have a positive ANA to be diagnosed with Fibro. Fibro in not an inflammatory illness.

Please let us know what you found out. Just thinking about you,
Kathy

[allih]

My appointment is on the 26th. I will post what the result is when I talk to the doctor. I've been keeping track of how I feel for the last few weeks and will take that in with me so the doc can see what I'm talking about. I hope that they can figure it out so that I can get some adequate relief, if that's possible.

Alli

[septemberrein]

Allih,

Just a suggestion, ask your rheumy about Ankylosing Spondylitis. It is an arthritic condition that matches many of the symptoms you have listed. But keep Fibro in mind as a possibility. GL

[allih]

Thanks.. I was diagnosed with Fibro last week. I don't have much low back pain anymore... not compared to what I used to have!. I've had an MRI of my spine and numerous xray's because of back injuries and there has been no sign of any arthritis or fusing of my spine. Thank god!

So it is jus plain ole Fibro.

Alli