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Difficulty..
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nmonte94 posted:
Everyone's already giving me a hard time and I've only been diagnosed for a few days. They're all telling me I'm over exaggerating and being negative, it's frustrating. What do I do
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booch007 responded:
Good morning,

I had such a hard time in the early years of this problem. Teased, my son's made fun of me...left to do things I knew I couldn't do. But as I mentioned yesterday in a note, I brought my husband with me to the neurologist and he heard all she said and saw the trigger point sites she injected.

IT WAS REAL for him then. Seeing was so valuable for him. I was so tearful when each thing I said had a problem with she understood and told me why.

She worked from the myofascial book that Dr Travelle wrote with Dr Simmons. (Dr Travelle was President Kennedy's attending to work with his back and keep him moving).

I have this medical book and it was $$ and dry reading but valuable for me. I have another book called FM and Chronic Myofascial Pain a survival manual; by Dr Devin Starlanyl and Copeland. Look on amazon.com, it is very helpful for you and helpful for you family to SEE the issues at hand.

We are hard enough for the doctors to follow let alone the general public. Sometimes I don't even understand what I feel......

Time,, patience and learning about yourself and realizing that you have to live for you. This is challenging.....challenging everyday.

I fight everyday to get out of bed and do what I do. This is my road....if no one gets it, it makes it tougher...hoping you can teach one person in your home and they can become your "champion" and defend you.

Also know that a newbie is not at all in a balanced place. You have work to do. Vit D needs checking, magnesium and Vit B Dr P here likes Malic Acid also. Your meds haven't been balanced to be just right.....so you are going to move forward and be a bit beter soon.

The worst part I think of this disease is finding a doctor you fit with, getting the right diagnosis and then the big hurdle....trial and error time for meds that help.

Alot here are on a muscle relaxant, something for pain (motrin...tramadol or higher) and then an antidepressant (this helping the brain chemistry issue).
Vitamins and supplements. Some take alot, some take little...we are all different and in saying that NEVER (hmm maybe in bold) NEVER painfree. You just turn it down a bit to have a life.

Don't look for perfect as in the end you will get used to a #4 out of 10 pain and can manage with that. Less is more. You have your whole life ahead of you to titrate and change meds...don't run up the scale and try it all,. I have seen some here that went to the top of pain management (with their doc leading to be painfree) You have no where to go then.....So look for better and stay their a bit.

The strongest med I take is DISTRACTION....I can lower the levels just by doing something that takes my mind away.....
I will often say here "get out and get up" Realy being with the public is so helpful and distracting...

To the right under resources is the Members Tollbox, written years ago and so many have put their tools they use to help in there. It is under Caprice as a link. Please take time to look in there. Also under Dr P....he has done wonderful things for people here to understand this physiological mess we are in.

OK, I have been on a rant....off the box. We are open 24/7 and someone will always be on to help. Good luck and I am so sorry you have needed to join the fmily. But it is a great fmily to be part of.

Take Care, Nancy B
 
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jillylin responded:
Hi,
I have only recently been diagnosed though I have had problems for years. It's a steep learning curve and I am finding it hard to explain to those about me just how I am feeling. I diid find giving my husband The Spoon Theory found on www.butyoudon'tlooksick helped them understand better.

I am so sorry you have had to join this "family" but you have found just the greatest place for support and information.
Hugs
Jilly in the UK
 
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foreversore responded:
Nancy and Jilly have given you good advice. Another thing for your family to read would be "A Letter to Normals"
http://www.fibromyalgiatreatment.com/letter_to_normals.htm

I am also recently diagnosed although I have had this issue for the majority of my life. Nancy is right when she says you need a champion. Mine is also my DH. He has gone ot every appointment and he will even ask my rheumy questions so he can understand better. If you can get just one person in your household to understand you will feel so much better about it all. In my case there were people, both family and friends that I had no choice but to cut out of my life as no amount of explanation was good enough for them. I know that this isn't a feasible option for everyone, but the stress relief of rmoving that negativity form my life made a big difference in my depression and anxiety.

I really hope that the advice and the links we have given you will help get that one person to understand you. Wishing you the best of luck with your family and know that we are always here for you. I am a late night/early morning insomniac so I am usually on in the dark night hours.
 
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forgetful88 responded:
Hard time about waht? Are you complaining or whining, IF NOT, don't worry about them....

You do what you can when you can. You don't have to explain anything to anyone...especially you medical issues.

It should be on a "need to know basis".

Quit trying to please everyone....Just take it easy and take care of yoursel. because no one else is going to do it for you....
 
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KatmanduLou responded:
I understand that you're going through. My DH was extremely helpful, cruising the web and sending me links to sites that would be helpful. people who couldn't be beneficial I basically cut them out of my everyday life. You have to socialize with family for the holidays, darn it!


There are some good resources in the right-hand column. Also check out http://www.butyoudontlooksick.com/ . There are some good tips for us, and you have to check out The Spoon Theory - it will help people understand what it's like to be in your body.


Have your doc check you for Vitamin D deficiency, too. Sounds simple, but we who live in the northern hemisphere are usually lacking in D.


Have the best day you can possibly have,
Lou
 
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nmonte94 replied to booch007's response:
Thank you for all of that. Right now I take gabapentin 2x a day and cymbalta once a day. I just started taking them a few days ago so I don't know the effect they have on me yet. I'm in pain every day with my legs and the weather is not making it better!
 
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nmonte94 replied to jillylin's response:
Thank you. Right now I'm just trying to learn about it all
 
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nmonte94 replied to foreversore's response:
Thank you. Yes, I continuously wake up during the night. I've yet to have a good sleep, it's definitely horrible. Right now, I do feel alone with this. Besides being diagnosed, I lost my house in hurricane sandy so it's been a pretty down past few weeks
 
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nmonte94 replied to forgetful88's response:
Excuse me? You don't need to be rude. I'm not complaining nor whining, I just wish for a break in my life. It's a very hard time for me. I not only have to deal with this at only 18 but, I lost my house in hurricane sandy. I'm just trying to understand everything and wishing I wasn't alone in this right now.
 
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angelswife replied to nmonte94's response:
Hi nmonte,
I don't think she was deliberately trying to be rude, even if it may have come across that way. A lot of us have given up trying to explain to others because they don't (and won't) get it. They will never understand because they don't have to deal with the Fibro. This is why groups like this are so important.

I and others have learned that we do need to put ourselves first, and take care of ourselves the best we can. Educating the people around us is also part of it, but they have to want to learn. Unfortunately that's something we have no control over.

I don't blame you for wanting a break...you are going through a lot right now. The important thing is to try to be gentle with yourself and not do everything at once. Over time you will learn what your limits are and how much you can do before you need to rest.

It takes time to find something that works, but you will get there and it will get better. It won't be like this forever. We have all been where you are. It is a learning process but this can be managed and you can still have a life. Hang in there! ((((HUGS))))
 
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dollbug responded:
Hello and welcome....MiMi in NC....the wrath of the dragon is a very mean and ugly illness....and this applies to anyone who has it....it is not an easy illness to figure out...it differs for a lot of people...there are no magic pills which will fix the issues that we deal with...there are no quick fixes either, that I am aware of...for most of us it has taken years for the doctors to finally figure out exactly what is going on with us...this is after many trips to the doctors, many tests which turned out ok and a lot of medicine that did nothing for us...it has been a very hard and long road for the majority...

We are all different and what helps one person may or may not work for someone else...it takes a trial and error process for each of us to find the *right combination of things which works for us*....

You will get all kinds of strange reactions from people who have *no clue*....most people do not even know what Fibromyalgia is...and there are still doctors who do not even accept that it is a real illness...but yet there are millions of people who are having to deal with it each and every day...

Try not to worry about *everyone*....since they are not going to understand what you are dealing with....try to have a positive attitude and try to take care of yourself...since you are the only one who actually knows just how you feel...

Learn how to pace, pace and then pace even more....as one of our old FMers use to say...use the 15/15 minute rule...work 15 minutes and rest 15 minutes...do not over do...as IF and WHEN you do....well you will surely pay for it...try to get yourself on a schedule of sorts...eating around the same time each day, going to bed and getting up around the same time...also watch what you eat and also drink plenty of water...

Learn how to stretch and do *gentle exercises*....so that your body does not get stiff...(even if you do not feel like doing this..)and try to get enough sleep....sleep is so very important for us FMers...

There are all sorts of good *tools and tips* that you will find here...check out the info under *tips* and *resources* that you will find to the right of this page...

Vitamin D....talk to your doctor about getting your Vitamin D level checked....low Vitamin D is common for a lot of people these days and for some it can cause additional pain....and according to the medical research, low Vitamin D can also affect other illnesses as well...it is a very cheap fix also....

Taking a hot shower at night using lavender bath salts will help your body to relax so that you can sleep better...and if you are too tired to take a shower, then you can just soak your feet in it...as this works also...

Dealing with FM can get better....but it does take time and effort on your part to figure out just what might help you cope better....and you should allow at least 6-8 weeks of whatever you try...as it takes this long to really *feel a difference*...

Please know that we FMers here understand what you are dealing with...we have been there done that...and it is NOT EASY...but it will get better...so hang out here with us...you will gets lots of good info here.

Take care and good luck...


MiMi
IN GOD WE TRUST....MAY GOD BLESS AND GUIDE AMERICA....

My personal exchanges are Vitamin D and Pain and Wrath of the Dragon....if you care to visit..
 
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nmonte94 replied to dollbug's response:
Thank you for all of that, I will speak to my doctor about my vitamin d levels also. I will try the lavender bath salts too. Right now I work mon-fri, off on weeks and I work 10-7 but sometimes I do overtime and work till 9. I learned my body can't always do that because it's already weak as it is. I wish I could work part time and make good enough money to support myself.
 
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nmonte94 replied to angelswife's response:
I understand, I'm just so at edge I always feel someone is trying to be rude with me in a certain way I'm trying to just keep myself together but lately, everything's too much for me
 
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xperky replied to nmonte94's response:
Wow, you lost your home in Sandy? You must be going through a lot of stress, and that just aggravates FM. Try to pamper yourself as much as possible to get through this time.

It's hard to ignore the negative comments from family and friends as we wish they would simply support us. I guess it's a normal human thing to push aside the weak and sick. There are a few caring beings out there, and those are the ones to stick by.
With Compassion,
Margaret


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