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Hi- I'm new here and have some questions..
12 Replies
pam80 - November 21

Hi. I'm new here. I was diagnosed with fibro yesterday. I kind of knew I had it but was in denial. For the past 2 yrs I've experienced daily headaches. I have depression and anxiety, been going through a lot of ongoing stress but I just chalked it up to depression. I've had neck pain for awhile-about 8 yrs. My dr found a very badly herniated disc in my neck and was operated on this past April.

Anyway, I think this is my first flare up. A few weeks ago I developed lower back pain which I've never had before, then days later my legs and hips started to bother me. A couple of days later, my legs became weak and stiff. Then I began to notice that all of the fibro tender points hurt me. My clothes hurt against my body..and there was a burning sensation all throughout my body. My muscles have become weak and I get out of breath sometimes walking upstairs.

The latest is this trouble that I'm having with my breathing. I am bloated, my stomach is gurgling, my abdomen feels full and tight and I struggle to take a deep breath. It's like my diaphragm isn't working properly and I can't get enough air in my lungs. It's a very uncomfortable feeling and it makes me feel dizzy. Does anybody have any idea what's going on? I've had anxiety before and had the feeling that I couldn't get enough air in my lungs but this feels different. I had less pain today compared to the past week or so which I'm happy about but what's up with this breathing thing and will it go away?

I don't know what to expect with having fibro. I only know what I've read and it seems pretty rough to deal with. I'm definitely scared but am trying to stay positive. I'm 30, back at home with my parents after a breakup with my fiancé and now this.

Will I have good days where I have minimal/no pain or will I have widespread pain everyday? I assume that I'm having a flare up because my pain has been a lot worse this past week. I know that fibro doesn't go away but when my dr (PCP) says it's manageable what does that mean? I want to get back to work, get married and have kids and now I don't know what the future wil hold for me. I'm grieving- I don't want this..but who does??!

What upsets me is that my parents think that FM hasn't been confirmed that it's a real illness and that just makes me so mad. I try to explain to them that it's real-our brains are more sensitized to pain and it's a problem with our CNS but my mom just says, "it's all emotional. Get your depression better and you will feel better." Well that may be partly true but I don't think the fibro will go away-but I don't know.
It just seems like everyday within the past week I've woken up with a new symptom. It's so annoying-especially this whole breathing issue that I have.
Does anyone have any idea what is causing this?

Well, thanks for reading and any response will be helpful, I'm sure.

Thanks!

 

Stacey373 - November 21

Hi Pam80 - Welcome to the forum! I'm going to try to answer some of your questions....although I'm still trying to figure all of this out myself! I was diagnosed almost 2 years ago...and I still feel like at times I have no clue what this fibro stuff is all about. I keep thinking that every time I think I've figured it all out...they go and change the rules on me!

Let me say first, I have no idea what is going on with your breathing problems. I've never had that kind of problem, but hopefully someone else on here will be able to help you with that.

Getting this kind of diagnosis is really hard to deal with and I do think there is some sort of "grieving" process we all have to go through. Actually I think most of us first don't want to accept this illness, even after we've been diagnosed. But eventually once you quit 'fighting" it....you then have to accept it and deal with it. I assume you are taking an anti-depressant? I hope you are...it will help alot to deal with all of this.

Everyone who has this illness is different. We all have different problems and varying degrees of pain associated with it. For me personally...I was able to maintain both good and bad days for quite a few years. Meaning I think I had more good days than bad. Grant it, if I over do anything or push myself or have a lot of stress or stuff like that...I would definitely feel alot worse.

Here recently in the past 4 months or so...I've not been doing good. I definitely had forgotten what a "good day" even felt like! I think I may have been in a major flare up, but at least today I don't feel quite so bad as I have been. I hope it stays this way!

I guess what I'm trying to say is that you are going to have both good and bad days and maybe the bad days are going to actually be bad weeks or months. And even when it's the hardest to do...try to always stay positive. that's really about the only thing we can control when it comes to this illness!

there are some things you can do to try to get your parents to understand all of this. Print off some of the research you've done about the symptoms and how there is no cure and have them read it. There is also a link on here for "family members"....you could maybe have them get onto there and talk to other people. It took me a couple of years to finally get my family to understand what I'm going through. You just have to be willing to share with them and try not to get so frustrated if they still don't understand...hopefully eventually they will.

I hope I've helped you in some way....Take Care, Stacey :o)

 

Fantod - November 21

Hello pam80 and welcome to the board! This is the most comphrensive site on the Internet for information about Fibromyalgia (FMS). There is a lot of good information in the blue boxes on the lefthand side of this page. And, we have a good group of people available to offer support, suggestions or just listen when you need to rant.

Fibromyalgia (FMS) is a disorder of the central nervous system. It is correctly referred to as a syndrome. The mechanism that causes it is not understood. There is no cure but it can be managed with certain classes of prescribed medication. OTC remedies like Tylenol do not work for the type of pain associated with FMS. Fibromyalgia is recognised by the National Arthitis Foundation, The Centers for Disease Control and the World Health Organization. It is confirmed as a real illness and is not figment of our collective imaginations.

FMS patients are shallow breathers. You need to make more of a concious effort to breathe deeply using your stomach. The sensation you describe of not getting enough air is common. There is not much rhyme or reason to FMS symptoms. They tend to wax and wane with no particular pattern. Try to remember to take more deep breaths and that should help.

As for the gurgling and full abdomen feeling that may be IBS related. Many of us have IBS related problems. In some cases, it is a chronic problem. In others, occasional. And, it may be nothing at all.

The sensation of having your clothes hurt against your body is called "Allydonia." I have it myself which makes getting dressed a challenge some days. I have had to change my wardrobe around a bit to accomodate the days that I actually need to leave the house when it is bad. Bras, watchbands, waistbands or anything that puts pressure against my skin can be really uncomfortable. I'll go for days or weeks with no problem and then it starts up all over again.

The burning sensation that you describe is probably nerve pain which is also another FMS "perk." That can be treated with a medication like gabapentin.

One of the reasons that you are in so much pain is that you are not getting restorative, deep sleep. FMS interrupts the deep sleep cycle with short bursts of high intensity brain activity. Your muscles require deep sleep in order to repair themselves from the days activities. No deep sleep means higher levels of pain. Treating the sleep issues associated with FMS is a crucial part of treatment. You should be on a sleep aid like Amitriptyline.

There are now three prescribed medications used to treat FMS. You have probably seen the ads on TV for Lyrica. The most common complaint associated with this medication is rapid weight gain. It may not happen to everyone but when it does most rheumotologists are not proactive about changing medications. The second choice is Cymbalta which addresses both the pain and depression associated with FMS. I use Cymbalta myself and have had pretty good results. The third and newest choice is Savella. It has been used in Europe for decades and was approved for use in the USA last year. It is going to take time and a lot of tinkering to find the right combination of medication and doseage to make you more comfortable. At a bare minimum, it will take two weeks or longer once you start on something to notice any difference.

With regards to to diet, if you use an artifical sweetner (including Splenda) get rid of it. If you need a sweetner, use something made with the nontoxic Stevia plant like Sun Crystals or Truvia. You can find the latter in the grocery store alongside the other sweetners. Try to avoid eating deep fried food, lunchmeat or red wine (nitrates) as these items will also ratchet up your pain level.

Your mother's reaction to Fibromyalgia is not unusual. Most of us have family members or friends who just can't acknowledge it. I'd like to suggest that you share this website with her. If you want to keep this site for yourself, than go to the National Arthitis Foundation website and use the "search" function to find the section on FMS. Give her a link so she can read about it for herself. You could also purchase "Fibromyalgia for Dummies" through Amazon. Like the rest of the dummies series, it contains good basic information. Read yourself and pass it around among family and friends. I'd also like to gently suggest that you consider finding a therapist who deals with chronic illness. Many of us see someone and find the extra support very helpful. You can call your local hospital and ask for the physician referral service. They should be able to recommend someone. The other option is to use Google and see who pops up in your metro area.

The key to living with FMS is learning to be grateful for what you can accomplish rather than what you are no longer able to manage. You must learn to pace yourself and respect what your body is telling you. Learn to say "no" and not feel guilty about it. Break tasks down into more managable increments and/or not be too proud to ask for help. As you have already discovered, FMS is variable on a daily basis. This makes it very difficult to plan. You will have good days but you will also have bad days. Everything that you want to do is possible. Right now you need to give yourself time to heal from your break up and get on a drug regimen that helps with your symptoms. Knowledge is power. Read through the blue boxes on the lefthand side of this page and look at some of the old posts to see how people manage this syndrome. You are not alone. I hope that my comments are helpful to you. Take care and God Bless.

 

kvc33 - November 21

Hi Pam, I'm sorry for the way life is going for you. I've had lots of the breathing issue and you are right, it's not the same thing as what you go through when you are suffering from anxiety. I had to learn to do deep breathing exercises every day. At first I could only take a few deep breaths a day. Check your blood pressure--that was a big issue for me. It goes very low and that's when I feel like I can't breathe. My pulse speeds up in an effort to bring my blood pressure up. I now take salt pills to maintain my blood pressure. Daily deep breathing also helps with anxiety and your central nervous system. I don't know why your Mom doesn't want to accept your new diagnosis. I guess she just doesn't want any more negative for you and thinks that if she denies it it will all go away. Go for short walks, it helps with everything. Look up alternate nostril breathing, it's a good form of deep breathing exercise. As for your future, you must put your health first, don't get yourself into a lifestyle that you can't handle. Strike a balance and gradually add things on if and when you can.

 

Fantod - November 21

pam80 - You should also be tested for vitamin D deficiency. Many people with FMS have this problem. This is done with simple blood work. Another option is being tested for gluten intolerance. It is entirely possible to be gluten intolerent (me) without having full blown Celiac Disease. The best and most accurate results are obtained using a stool sample. Either of these problems will also cause widespread, chronic pain.

And, you should be seeing a rheumotologist who is knowledgable about FMS and up to date on the latest treatment protocols. To see a list of fibro-friendly doctors in your area, go to the National Fibromyalgia Association website. Not all doctors are created equal when it comes to managing this syndrome. There are still many of them that do not recognise FMS. You will have to be very proactive in order to get proper care. Take care.

 

pam80 - November 22

Thank you everyone who has responded to me. I don't feel as alone because there are people out there who understand (you guys). Although I'm sorry that you all have to suffer. I do take neurontin, cymbalta (just started) and amitryptiline (also just started). I think I'm on a pretty good drug protocal so I just need to keep the faith.

I am now experiencing chest pains and tightness in my throat making it very difficult to breathe. Is this part of a fibro flare or is it something that will always be with me? It feels like there is something stuck in my throat. Gosh this is such a horrible feeling and everyday it seems to get worse. Should I go to the ER? I'm dizzy and am so short of breath. My throat and neck feel like they are on fire. Please help. Thanks, Pam

 

Fantod - November 22

Pam - Go to ER now. I'm not sure what is wrong but better safe than sorry. Let us know how you are when things settle down. Take care.

 

pam80 - November 22

I'm feeling a little better-just have pain everywhere, espespecially my throat, headache and back of head and shoulders. Trouble breathing is still going on- I'm going to call my doctor tomorrow. It upsets me because my PCP thinks that the reason I have fibro is because I have depression and intense anxiety. I'm definitely grieving- I cry a lot because I want the old Pam back. I'm just having trouble adjusting. I don't want to feel pain everyday. I'm also scared that it could get worse. How do I prevent that from happening? Thanks again for all of the responses!
Pam

 

slb71 - November 22

pam80 - i am glad to hear you are feeling a little better but please be careful. don't hesitate to get the medical attention you may need. i am also new to this forum and have found the info and support from others very helpful.i have also had the same thing happen with my throat and tongue. i feel like my throat is going to close up or have the feeling that my tongue is swollen and thick that i'm afraid i won't be able to breathe. the burning sensations are awful.my head, neck and shoulders are, like you, my biggest complaints however my arms and hips have been pretty bad lately.

i do understand the desire to want your old self back. i have been feeling that way for a long time also.

i do hope you will call your doctor tonight. if not please do call in the morning. keep us posted.

 

kvc33 - November 22

Hi Pam, I'm glad we are a bit of help to you. I had the feeling of having a lump in my throat for years. It drove me nuts. I can be due to a chronic viral infection. I finally took a naturopathic herbal tincture and it got rid of it. If you are feeling tight in the chest try a hot pack to relax the muscles. It works for me. Also put some ben gay or something with menthol or eucalyptus on your throat, it may help you breathe better.

 

pam80 - November 22

Hello everyone. Today was a rough day- I woke up feeling like I haven't slept in days. My whole body feels like it is on fire. What should I do to get through this? Am I experiencing a flare or are things going to be like this?..the whole tightness in chest and burning muscles? I'm so scared.

 

pam80 - November 22

slb71- do you get relief from the burning sensations?

 

kvc33 - November 23

I have not had the burning sensations but others certainly do. Have you tried cold packs? You can get them from the drug store. Put them in the freezer for a while and then take them out and wrap in a tea towel. You are having nerve pain, if you are taking vitamin B12, stop, as it can cause this. Your symptoms will change from day to day with seemingly no rhyme nor reason with fibromyalgia. See a naturopath and get yourself tested for food allergies to rule that out.

 

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