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tribalcatt posted:
Hi I am a 32F and finally received a diagnoses of FM. Countless doctors, methods, etc., were tried,someone finally listened... (Severe migraines since '00, IBS, Constantly drained, sinus issues, etc.
Ok so the newest thing is to take gabapentin, I believe. My body is fighting this tooth and nail-- nausea, pain all over, blurry vision, itching, etc. A quick issue after only 2 pills~ I am to the point of sticking with my prior alternative methods only-- 5htp, accupuncture, etc. I hear the real FM meds are very expensive...
And my lovely s.o. terms it that I can be lazy officially.Gee thanks.
He just doesn't get it. Who does other than us, am I right?
I failed Gabapentin and Savellea.
Trying 5HTP ,Vit D, and multi vite again.Thanks for listening... TribalCatt >^..^<
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tribalcatt responded:
Savella- failed.
Now, back on 5HTP, Multi Vites, Vit D and Flexeril at times.
WIll be going back for pain management. It has been stormy the last few weeks so the pain has definitely been worse. Not to mention 3 tragedies in family. Libido- 0. Relationship-- deteriorating. He just does not understand.

Also will re-add Melatonin for sleep.
 
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katmandulou responded:
Hi tribalcatt, and welcome!


Very few symptoms you listed have much of anything to do with FM. I've noticed that many people on the boards have multiple illnesses, and many aren't related to FM. It really sux that there is no one test for FM, it's a syndrome of elimination; they test us for a lot of other stuff to eliminate the other stuff.


The nausea and itching suggest that you might be allergic to something, and I hope you've already called your doc! I was on a BP med a few years ago and developed a cough that I later found out was an allergic reaction!


The "real FM meds" I'm on aren't expensive at all; I get the 'cheap' price of $10 for 3 months worth @ Walmart. It depends on your doc and what he/she believes will be best for you. I asked my doc about Lyrica (because the ad said I should) and he said I didn't need it since I was doing so well on the med I've been on since 2005.


As for your SO, ask him/her to 'help with research'. My DH was a gem, and did a lot of internet research. And say "stay with the medical sites", since personal site can be no more than "my meds aren't helpful, my spouse doesn't understand, etc etc". They're very cathartic for the writer but not much good for the rat of us. SOme of the best sites include webmd.com, the NIH and the ago Clinic. I also highly recommend http://www.butyoudontlooksick.com/ , and make sure he/she reads The Spoon Theory. You read it first, it's a good way to explain how we live.


Wishing you the best day - and the best weekend - you can possibly have,
Lou
 
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Just_a_Scots replied to katmandulou's response:
Hello,

I'm a male with FM, and I can also say that my spouse does not understand. I think that any medical problem that leaves you looking normal is difficult for people to understand. All you can do is be patient with them and remind them. Some days it is very hard.

As far as medicines go, I have tried more than I can count and have not had any luck with any of them.

I agree with Lou about having other issues. I found out that my rashes were because I developed an allergy to the sun in addition to all of my other problems.

Keep at your doctor(s) and don't let them off the hook. If your primary is too big of an A-hole, I would say switch to someone else. If they aren't helping you then what do you have to loose?

Good luck!
 
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painfullyexhausted responded:
Trial and error is my motto when it comes to this crazy thing called fibromyalgia. I've also tried and failed so many meds including Gabapentin, numerous other ones and currently Savella. Some people say these are the best yet but not every med works the same for everyone. Research everything you can that way when you go to the doctor you are understanding what he/she is saying. You will be able to question the motive and suggest things as well. That's what I do for every visit. It challenegs them to not say "try this and see how it works". You have to look out for yourself and they work for you, after all your the one that is paying them. Ask your s.o to read about FM, pull articles from the web, read books, and highlight the important parts so they don't get bored since it really doesn't effect them (physically) it doesn't keep their attention. I have a very supportive husband but a couple yrs back my FM was really bad so I had him sit down with me and I read a book to him called Living with Fibromyalgia. It has stories of other couples going through this and it really opened his eyes and he was ready to fight this battle for me. His exact words were "what are WE going to do about this". He went to my next appt with me, asked questions, explained what I was going through from his point of view. It was so amazing but it took me making him sit down and really listen and feel my pain. He was always helpful with rubbing my knotted muscles, taking care of the kids, doing housework but he really didn't get my pain until then. It upsets him when he can't take the pain on himself. I realize that this is not the norm for most spouces so I'm very, very blessed. Right now I'm probably the worse I've ever been because I'm very depressed and feel as if I can't do this one more day. Depression, I think, is normal for all of us FM'ers but this is more than just the every day down and out. It's time for an antidepressant and I'm not ashamed to say so. I know since I started chatting on this site, not only have I learned a lot but it's helpful mentally. I'm starting to isolate myself even more because I din't want to be a downer to everyone else including my husband. This scares me, a lot. He's always been my rock, my hero but I know he doesn't know what to do to help me therefore I don't want to burden him. He agrees that I should ask about an antidepressant so we are on the same page but it's me that's pulling away right now. Man, I really turned this into all about me, please forgive me. I'm being selfish, sorry. Anyways, try the things I mentioned prior to blabbing about myself. Hopefully something will click with your s.o so he doesn't think that you finally have an excuse to be lazy, that's just wrong !! I sincerly wish you the best. Keep your chin up, it's a long journey but maybe you will find the answers your looking for. Best of luck
 
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squarley responded:
Has every one read all the symptoms of fibro, some one said your 's did not sound like it , well they are all symptoms,I have all the same and more and there all listed as symptoms. Yes you can all so have side effects to different drugs to, so talk to your doctor and keep trying different thing and you will find what helps you the most were all different and have different symptoms,and what works for one may not work for another,I am hoping you find some relieve and your not alone. soft hugs,Squarley
 
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tribalcatt replied to squarley's response:
Yes I agree with you and have tried taking paths to help my conditionn (s). I was flabbergasted at the prior's opinion...
 
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SkayH responded:
The so called REAL fibro meds are not the answer. If you want to do yourself a favor, get your vitamin D level checked. Most of us have low D levels. Getting it up to 60-80 can change your life. It helps pain and depression. Adding other supplements help as well. I've been on the REAL fibro meds and they nearly ended up killing me literally. Will never go back. When I first was diagnosed with fibro there was no information and really now place to do any research. Today there is all kinds of research out there at the click of your keyboard. There are no excuses for not being informed today. Good luck to each and everyone of you.
 
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BluePoet67 replied to SkayH's response:
To SkayH,
That's great if that worked for you. But for me I had low Vitamin D levels-really low and they were brought up and there was absolutely NO CHANGE to my condition. None to the pain, fatigue, depression, nothing. I felt the same as before.

So be hesitant before issuing sucha blanket statement as "REAL fibro meds are not the answer" and stating that getting the vitamin D level up is like a miracle.

I am not taking any Fibro drugs either because at this time any meds on the market I am allergic to so I am not advocating RX meds. I am saying what works for every person is different. SOme meds work for some people and for others they don't. Some vitamins and supplements work for some people and don't for others.

I am glad you found something that made a difference in your life and I am glad it does in others as well, but I know there are many here who are on RX meds that feel like they are saved by them.

Best wishes for you,
Blue in Ky
 
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dollbug replied to BluePoet67's response:
Hello Blue....and welcome....MiMi in NC...I do not think I have talked to you...I wanted to just comment to you about some things stated in your post...as you probably already know...we, FMers, are all different..and what helps one person may or may not help another person...
So it does take a trial and error process to figure out just what a person's body needs to help it cope better...

I am one of the FMers here...who found out that Vitamin D did, in fact, made a big difference in my pain levels...I am NOT painfree....nor do I expect to be...but I have my pain under control...as long as I watch things and do what I know I have to do to stay within the pain level that I can cope with...

When I first got sick, I had multiple health issues...and my doctor was treating me for depression...that was all...I continued for a while to try different medicines but none seemed to help with what I was dealing with...

I then decided to do my own research....because I knew how I felt....no one else did...the doctor had no clue, my family and friends had no idea...it was only me who knew that I was sick and getting sicker...

I ended up thinking that perhaps I might have parathyroid problems...as each time I searched out things about myself...it kept pointing me to parathyroid problems....I did NOT even know what a parathyroid was....so I continued to search even deeper...and the very strange and odd thing was...the more I looked into this the more it seemed to "fit" what was going on with me....I had 14 out 19 symptoms of this...

So I went in again and spoke to my doctor about this...he assured me that I was just depressed and did not have parathyroid problems...well...I was getting sicker..and finally one day I went in and I had a heart to heart talk with my doctor and needless to say...he did not like what I was telling him...I demanded that he prove to me that I did not have the parathyroid problem...

So he scheduled a scan for me...and told me he did not expect it to reveal anything...he would be in touch...

When I got the telephone call...it was my doctor's nurse on the other end...she explained to me that my doctor was referring me to a parthyroid surgeon....(I had never talked to a nurse about any tests that I had before-so this was interesting to me)...

I did go to the surgeon and he went over my medical records...and he told me that he thought most of my problems were due to low Vitamin D...my level was 12 or 14...he did not think the parathyroid was the issue either..

I looked at him and I told this man that if he could not help me...then I wanted him to point me in the direction of someone who could...he then decided that he wanted to do an ultrasound to verify what he thought...

This was my saving grace...as when he did the ultrasound he found the problem...I ended up and had surgery on this....it was indeed a surgery to recover from..

So my point is this...we, FMers, who have multiple issues...just get to the root of each and every issue...before we can finally start feeling better..

I did improve with this surgery...but I also had to get my Vitamin D level up...it took me well over a year before I was able to get my level even in the *low range*...the range is such a very wide range...perhaps you need to increase your level to be in the higher normal range.

I ended up having cervical (neck) surgery, elbow surgery and several hand surgeries...before I got my pain issues under control...

I do not take any prescription medicines either...for the most part...I do have muscle relaxer...(due to some man backing into me a month ago)...

But I have found taking the vitamins and supplements that I take and doing other things as well....do make a BIG difference for me...and you are right...all vitamin and supplements can differ....they are not the same...you have to try to find vitamins and supplements just like anything else...

I am sure you can find something that will also help you cope...keep looking...

Take care.


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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MMM42 replied to Just_a_Scots's response:
Many recognized meds for Fibro warn against too much sun exposure.
 
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MMM42 replied to painfullyexhausted's response:
Been there - done that! It does get better from time to time! Never give up!!!


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