HealingWell
Search Close Search
☰

Coming to terms with Fibromyalgia, new here

Support Forums
>
Fibromyalgia
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 6/1/2011 4:19 PM (GMT 0)

Hello everyone my name is Gina, I have been diganoised with Fibro last year and for me it was kind of a relief. Because for years I have felt that I was just crazy.

It started about 12 yrs ago when I was 30 I started having all this pain my pain tolerance is very high and I usually bounce back from things and just go on because I feel that I have no other choice. I am always in some sort of pain so I am use to it at this point. It is now the other things that go hand in hand with this disease that are plauging me now.

I have been recently diganoised with TMJ and have been to an ear specialist and have the ringing in my ears that they are saying is because I am clenching my jaw but after reading more I found that it is common with fibromyalgia. I have been having issues with restless legs to the point of having to get up and walk around and stretch in order to sleep. I have IBS with constipation and yesterday I had a colonoscopy and an EGD to see if there was anything else and there is not so it is just the Fibro. I have had a day and night sleep study done because of my excessive fatigue and they only came up with excessive sleepiness, not knowing then it was fibro. I also have Over Active Bladder Syndrome and am on enablex for that. All the side things that happen to the body for which I don't really understand.

I have moments where I have extreme pain where I can't get out of bed but that is not as much thank God, just constitant pain and it is livable until someone tries to touch me. If I approach them I am ok but the surprise stuff just hurts.

I have tried flexril and that just makes me more sleepy. I have been on Cymbalta and I got myself off of it after a year. First of all the cost was extreme I couldn't afford it, second of all it is NOT a good drug when you try to get off of it, it is like going through withdrawl from cocaine. The dizziness, the sick feeling it is HORRIBLE and I will never go back on that again. I am now trying more of a natural way of eating better and taking supplements.


Anyone else trying this?? I am now talking Omega 3 fish oil, and Vitamin D and Vitamin B12 looking into grape seed oil and a Nature's choice daily vitamin packs. I am going to the gym 5 to 6 days a week working on the tredmill and some weight, I do tanning bed too for the warmth. But I am done with things like Cymbalta, Lyrica, Savalla until there comes a time where I can not stand it any longer I won't put those in my body.

My biggest problem is that I wish there was a way to make my family understand I can't do everything? I am not making up being tired and needing naps. I am not lazy, that I do need help. They really don't seem to understand this disease and I am not sure how to explain it to them anymore then I already have. Anyone have this problem too? What do you do?

I am glad I found this message board, I work in a hospital at the nurses station on the medical surgerical floor as the Ward Clerk, nice thing is this board is not blocked by their security so I can check in at work. Glad to find a place where I fit in.

Gina

Posted 6/1/2011 4:45 PM (GMT 0)
HI there,
I am just coming to terms with my situation too. For so long, it was "just this" or "just that". How come others recovered, and i struggled?
It is both a weird feeling of 'coming to terms' and a relief, in a sense, because I think i just need to understand more than anything else.
i watch little kids play, grownups run around, etc, and i remember when sitting for an hour, going to a loud restaurant, and doing yoga were easy.
It seems beyond my reach now but i will try to find solutions, just like everyone else.
You are lucky you can go to the gym!
But i too won't take those drugs. Totally with you there. It took em 3 to 6 months to get off Topamax and i really liked this medication. I just needed to make sure it wasn't adding to my symptoms. that was a lesson. Your brain gets dependent on these things.
i take so many supplements, i have no idea what helps. Apparently, not much, though who knows what I"d be like without them? <grin>
How can you tell?
Posted 6/1/2011 5:25 PM (GMT 0)
Welcom to both of you

This forum was a godsend for me when I was dxd in 2004. We have probably thousands of years of experience amongst all of us-lol. We are always here to listen. We share what works for us from spiritual to food.

Disbelief amongst loved ones is a constant topic here-unless you have fibro, it is VERY difficult to understand how constant and debilitating it can be...how it influences every part of your life...but you will be understood here and the only stupid question is the one you DON"T ask!!!
I, too had TMJ in the beginning and struggled with the jaw pain, headaches and several times one whole side of my face just blew up. That has passed. For restless legs, which I've had since I was a child, talk to doc about ropinirole...it helps.

There will be more folks dropping in to say hello, I am sure. This is an active forum, unlike others I have found. So welcome, ask away, whine away, we've been there done that

Maggie
Posted 6/1/2011 6:22 PM (GMT 0)
Hi, Gina, and welcome!  I'm so glad you found us and joined the family!  We have wonderful members that love to help one another and, as a bonus, really do care about each other, too!  I think you will like it here.

 

You have a lot of what the rest of us have.  Not fun but life still can be good.  I've had fibro for decades and have still had a full and enjoyable life in spite of it.  I have managed fibro by using ibuprofen with food, extra strength Tylenol, malic acid/magnesium supplements, and vitamin D3 to help with pain and fatigue.  I add to that gentle stretching exercises, gentle exercises (I walk and swim), and gentle massages.  Lastly, I pace myself when doing things.  All these together have helped me be in control of my pain.  I didn't say pain-free.  I'm not.  But I'm in control of my pain, my fibro, and my life.  That's good! 

 

Be sure to read Fibro 101...the second thread on the forum.  There are links to good information about fibro and you will learn a lot there.  That's important because we have to be our own advocates with this illness.  Read the links called Symptoms and A Thorough Explanation of Fibromyalgia.  These would be good places to start for you.  You will see yourself there!  Also, there are links about the vitamins and supplements I mentioned above along with gentle stretching exercises, too.

 

There are links that might help other understand, too.  Some people will never understand but others might try.  These links are called The Spoon Theory, Doctors Respond to New York Times Article, and A Thorough Explanation of Fibromyalgia. 

 

I'm looking forward to getting to know you better.  Don't hesitate to ask questions because we are here to help you.  I hope to hear more from you soon!

 

Sherrine

Posted 6/1/2011 6:41 PM (GMT 0)
Thank you all so much already. I already feel I am not alone in this struggle. Today is a tough day for me. I had a Colonoscopy and EGD done yesterday because of problems I have had for years and my family history of colon cancer. Turns out I am good except for some large internal hemmorids. SO that does just mean I have IBS so those two medicines I will take the miralax 49 grms a day and Amitiza because that part of this disease I can't take. So today I am off work and I just am having a no energy day. I am so tired but I can't even nap, just a blah day with my knees hurting and my legs and back today and as always the circle from the back of my head to my shoulders. So I have decided screw it I am relaxing on line today made some meatballs in the crockpot and will boil some spaghetti and that will be dinner tonight for everyone. I may go for a walk today since it is nice or go to the gym for some treadmill depends how I feel.

The worse for me is the looks and the disbelief as to why I can't do things by my immediate family I have three children and a grandson that lives with me and my husband they are all older my youngest is 14 yrs old but they are so use to me always doing everything all the time that the days I can't they don't see to understand and if I dare say it is the Fibro they just shake their heads and walk away and my fear is that as I get older this will get worse then what?

I am still feeling some of the withdrawl from the Cymbalta I haven't taken it since last thursday I was doing every other day then every three days and now I am done. The side effects from that are not worth it and if it has done this to my brain when I try to not take it what has it been doing to it the past year? I am going to try some beginners yoga and some vitamins and healthier lifestyle and see how it goes. Besides I miss my sex drive these non child baring years are supposed to be the most fun. LOL

I am heading to the Fibro 101 folder now. I just love to read, just wish I had the money to try everything I want to try. LOL

Gina
Posted 6/2/2011 3:49 PM (GMT 0)
Gina,
Aside from the over-active bladder I could not relate MORE to your story and symptoms. I wish I knew what to tell you. As far as getting your family to understand I don't know that there is any one thing you can do or say to make them "get it". One thing I found that helped me, was to speak to a therapist who deals with people who have chronic pain. It allows me to talk and sometimes cry about it, so that I am not exhausting my friends and family with it. She also validates my feelings and frustrations. Sending you hugs from someone who totally gets what you're going through. Hang in there.
✚ New Topic ✚ Reply