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Fibromyalgia---need help
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crystallou01 posted:
Hi, I'm new to this community, but I found it while researching online. I don't really use this online stuff a lot. I am 27 y.o. and was diagnosed with FM in 2008. I work as a nurse (12 hour shifts and all) and sometimes I find it extremely difficult to go to work. It's not because of my job--I really like it, It's because I find it hard to keep up with the pace. I read some other posts about not sharing that you have FM at work, and I pretty much agree. I tell only a few of my coworkers, but don't really see a need to tell everyone what is going on. I was taking all kinds of medicine, including savella, then I lost my health insurance and it costs 75$ to get it filled. I can't afford that! I found that it helped me a lot. The prescription discount drug card I had helped a little bit, but now I'm out. I go to a regular MD, who believes me when I tell him about the pain, but he hasn't really been proactive in helping me to deal with it other than to give me savella samples. He indicates that I have anxiety issues. Duh! I know that! Any one who is in enough pain every day is bound to have anxiety issues. I have 11 herniated discs in my back that the doctors seem to think is no big deal, but to me its getting harder and harder to get out of bed every day. Sometimes the regular tasks I have to complete are so difficult. I don't want to whine, by any means, but HOW DO YOU DEAL WITH IT? Sometime my thighs and muscles hurt so bad, it hurts to pull my pants up!!!! I'm running out of coping mechanisms and deep breathing and imagery will only go so far. At one point the doctor had me taking narcotic pain medication and antidepressants, but they did little to help. Then when I ran out the doctors office refused to see me because I couldn't pay the 80 dollar copay! I about went nuts!!! The claimed they were sorry with smiles on their faces. I felt so bitter---how can they be sorry when they don't live in my shoes? I am the kind of person, as I'm sure most of you are, that if I'm hurting, I don't like to broadcast it everywhere. So, naturally any time I leave the house I don't necessarily look like it---then when I get to the doctor, they act like I'm not in that much pain, or like it's not that big of a deal. I'm sick and tired of it. I don't know if I'm expecting words of encouragement or just to find out if it's that bad for anyone else? This is just the tip of the iceberg. I'm actually afraid to delve deeper because I've begun to feel pointless. I'm just not sure what to do anymore. I have three children, a husband, patients and coworkers who depend on me----I can't just quit, though I really want to.
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crystalgreeneyes responded:
Hi. I am sorry that you have this diagnosis at your young age. It is very difficult to deal with everything. The doctors, the tests, the medications, side effects, people not understanding etc. etc. I have been going to my Dr. every few weeks now trying different drugs. It has been a nightmare because I have found that I am very intolerant to medications and the side effects often have me immobile. I recently tried Cymbalta but I was so sick and could barely move for 2 weeks that I really just had to stop. I lost 6 lbs and I am already very thin. What have you tried? Have you had bloodwork to test your Vit. D level and magnesium? Have you been to see a rheumatologist? It's very tiring, I know to have to go through this all the time when you are feeling so fatigued. Perhaps you could look into some natural supplements. For example: Fibrosense, 5-HTP, GABA (for anxiety)Valerian and Melatonin (for sleeping) There are drugs companies I believe who will give people who can't afford them, out of compassion.
It mostly does not do any good to complain especially in the workplace; no one wants to hear about it after a while. The most important thing you need is strong support. I don't have that and I do feel like giving up every day. Since you are a nurse, is it possible that you could get less demanding job, in a doctor's office or clinic. A woman I know who is nurse took some courses and now she works in a cosmetic surgery office giving Botox injections and she makes really good money.
I am very angry and I have a lot of anxiety about this condition and my lack of support but I have a daughter living at home and she needs me so I go on. I guess you just have to keep trying to find something or combination of things that will work for you. I don't take anything for pain but I do taking anti-anxiety med and a sleeping pill at night. I hate doing it but I have to sleep. This is critical for fibro people.
This site is helpful. I hope you find something. I wish you all the best.
 
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booch007 responded:
Ok, first...take that deep breathe we offer to patients in trouble...just before we are going to help them......

As a nurse you must have a good head on your shoulders, we don't get this license easy*** right? Look into the savella company for assistance as it HELPED YOU. They WANT you on their drug.....that's #1.

As your doc is looking for the $$ and not looking after you. Move over to a managed clinic type that is hospital supported and will charge you according to ability to pay. I would also go Pain Management in your case or Rheumy if you have to, rheumy though might present a fit issue...pain management takes everyone.

It is sad that though you are working you are not given health insurance? Hmmm are you Part Time, can't you pay in?

I always have questions instead of just comments......

To the right under resources is the Members toolbox, look through there for more non-medical help that is FREE to help you. So many members shared their path to help another.

Good luck, keep us posted...Nancy B (RN)
 
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dakotaspirit1957 responded:
My heart goes out to you... I became ill 30 years ago at the age of 25... It was only a few years ago I received my dx of FM... I am a multi illness person and mine seems more like a complication to my other illnesses... So I am in a flare all the time and have times they just get worse... That is when I talk about being in a flare... I hurt 24/7 all over tho... It just gets worse at times...

When I found out how ill I was 30 years ago... RSD and MS I thought about giving up... but I had 3 little ones depending on me and I have never been known as a quitter... My son forever reminds me of my "Dakota" spirit that helps me remain strong and fighting no matter what the odds... I was told I would never have kids and had 4... one was still born... but I could use all the angels I could get too... I was told I was to die of cancer twice and that was my third and fifth bout of 7 cancers... I have now been cancer free for 13 years...

I believe that foremost in any illness comes positive attitude and acceptance... I fight much better if I am not the angry depressed person I can easily become... And yes I am human too... I do get down and angry and I live with depression and anxiety as other problems in my list of illnesses and yes they are effected by my pain and illnesses.. But they were here first... I also get mad when I feel I can't fight this and I get tired of being ill all the time... but I practice accepting myself as I am every moment by moment and on my good days day by day... generally moment by moment... I practice accepting what is happening inside me and I accept the help I need to help build the power and strength to be strong enough in my spirit to fight.. even if I have to do it alone... Though I am never alone... I always have me... my angels... and my lord...

I use meditation and illustration and yes somedays they only go so far... but even on those days if I am working on acceptance at the same time they do help... I also use self hypnosis... I was taught it years ago... I concentrate on it so well now that I can respond to people while hypnotized... answer the phone and remember it lol... use to not remember it lol... I can be taken blood from and given shots without jumping lol... as long as they don't say "it is going to hurt now..." and I can be under in a matter of seconds and have no trouble coming back out... I have a bucket of pain killer to place my hand in and then I place it where it hurts and feel the warmth of it or cooling of it whichever I need for it to control the pain better... I have a bucket of sand to hang on my arm to make me concentrate and become tired or more relaxed... by putting more sand in the bucket it gets heavier and heavier and my arm gets tireder and tireder... lowering slowly into my lap... more relaxed and ready to rest then...

Nothing is perfect... nothing takes my pain away 100 %... I am always in some degree of pain... but I have 4 illnesses that cause pain and skeleton and muscle and nerve damage that causes it's own pain... I take atleast one or 2 meds for each of my illnesses... and pain killers... but the pain is manageable... and I can usually still not give up... and be strong in soul and spirit...

take care... feel better soon hun...

Love... Jan/Dakota
 
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Lauralizzie01 responded:
just wanted to say i feel your pain... 29yo here, Im a parapro in a classroom for kids with significant special needs, busy busy busy with lots of lifting and supporting during ADLs and ambulation, and man does it break me down.... thank goodness they offer insurance or im not sure i could do it! and nursing has to be harder! pain management has helped me enormously! the dr has me pn the butrans patch, i only put it on once a week and for the first time in my life my pain is really under control! i def. would encourage you to look into pain management!
 
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foreversore responded:
I feel your pain. I too have a significant number of herniated discs and the neck and back pain can be intolerable at times. Nancy had a good suggestion about looking into a clinic that has you pay based on your income--BUT research them first. The one I have in my community does not give any type of pain/depression/anxiety meds because of the potential for abuse. So my local clinic like that was of no use to me. It may not be your ideal (I know it wasn't mine) but look into public assistance if you can't find a good clinic. In my state if you have a child under the age of 18 without insurance the child is automatically covered and depending on income parents of children under 18 can be covered as well. Also check with your township office, local churches and local charities as many of them will help with prescriptions provided you meet their criteria. My DH and I have had no choice but to do this for a while. I haven't been able to work in 2 years and he was laid off after having an MI and was out of work for a year. He is just now getting back to work and I am going through the SSDI process (not happy about it but I don't feel I have any other choice due to pain/fatigue). It may take some research on your part but where there is a will there is a way. Your local public assistance office may even have a list or pamphlet of organizations that are able to offer you help.

I hope you can get everything figured out and get the help you need. I know what its like to work yourself half to death for little pay and no insurance as I did it for years until my body said "no more". I am praying you get the help you need before you get to the point where I am.
 
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annette030 replied to foreversore's response:
I volunteered at a local free clinic where the doctors did not prescribe narcotics, but they could refer patients to free specialists who could if they chose to do so.

Just something else to think about.

Take care, Annette
 
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csshughes responded:
I've only recently been diagnosed at 23! I somewhat feel as if the doctor did not really check into my pain as much as I thought she would and kind of threw the diagnoses in the air without any explanation at all. Now she refuses to give me a medication that doesn't make me vomit or sleep all day. Believe me, I KNOW how hard it is to get out of bed and I give you props for being able to handle your job. I am a single unemployed mother of one and I get so overwhelmed that I cannot keep up with him. I tend my moms lil ones as well and tend the household duties. I'm also one year away from graduating with my associates degree. However, my grades have slipped dramatically because I get so tired. I can't sit for too long because I just fall asleep. After sleeping 12 hours a night, how in the world can I still be tired?! With my bi-polar causing insomnia and then the Fibromyalgia causes chronic fatigue, I want to pull my hair out! I don't even know where to go or who to talk to and I hate to complain because I get treated as if I'm just a drug-seeker because of my age... I'd MUCH rather find an alternative remedy but like you said, it can only go so far.... Just know you're not alone...
 
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crystallou01 replied to crystalgreeneyes's response:
Hey crystalgreeneyes,
Thank you so much for taking the time to respond to my post. I was at my wits end it seemed like the other day when I posted this. I didn't really expect to have anyone respond, but I got several responses. I can't tell you how much it warms my heart that there is a way for people who have the same conditions to be able to talk about it online. I just wanted to post a huge thanks to everyone for responding. I am of from work tomorrow and plan on contacting the makers of Savella myself. I do take melatonin supplements to help me sleep. I find myself angry at times too. I keep telling myself i don't want to be bitter because it could be so much worse. Some days I listen to myself...and other days, it really helps to have an outlet. Thank you for your advice. I'm sorry that you don't have much support at home but I would be lad to offer any kind of support through this forum that I can for you. Wishing you well.
 
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crystallou01 replied to booch007's response:
Dear Booch007,
I honestly asked my doctor to send me to a pain management doctor and he told me that he could help me manage my pain. HA! that's funny, when I think about it....Anyway, since then he told me that he would send me to a pain management doctor...but I'm worried because there is such a terrible stigma associated with that by every one that is not in pain, I guess. I know I shouldn't care what other people think, but I have to be realistic and realize that my decisions will also affect my family. When looking for a pain management doctor, what kinds of things should I be looking for?
 
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crystallou01 replied to dakotaspirit1957's response:
Wow, what an inspiring story. I guess I'l just have to keep trying to find the right doctor...or wait until I hav insurance to send me to another doctor...How have you managed all these years? Sometimes I feel like my family is clueless. I find myself getting angry at them and me because I hurt like I do. I don't want to live my life with regrets...or wishing I had spent more time doing (insert anything here). Iused to have a wonderfully positive attitude. It's just getting harder and harder. Thanks for taking the time to respond to my post.
 
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crystallou01 replied to Lauralizzie01's response:
Hey Lauralizzie01, I don't have health insurance because of all of the days I have missed and my job cut me from full time to prn...In essence, I'm grateful to have my job, but I won't be able to get insurance back until at least january. Therefore, I'm SOL on getting help from the doctors until then. Thanks for responding. I can't imagine beinga parapro with a bunch of little balls of energy around me...especially when I don't have energy. Kudos to you!
 
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crystallou01 replied to annette030's response:
Thank you annette030 for your thoughtfulness.
 
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crystallou01 replied to foreversore's response:
Oh thank you foreversore,for responding to my post. I'm desperate and I appreciate any advice or help with information that anyone can offer. Thank you.
 
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crystallou01 replied to csshughes's response:
I'm tired of the doctors and nurses I see acting like I'm seeking pain medicine. In fact, the last time I went to my doctor was in August and he told me I was addicted to my pain medicine because I called the office like a crazed addict after they refused to see me because I didn't have the money! Yeah, I was crazy and completely out of line, but it wasn't because I was addicted. It was because I'm so darn tired of hurting. I haven't been back to any doctor since...and I'm just not sure what else I can do...I appreciate you sharing your story. I dont know why but it helps to know I'm not alone. I'm a nurse, but I'm not sure how much longer I can work in that capacity. God bless you and I'll look for future posts from you. Thank you so much for sharing. It seems with your diagnosis of bipolar the community should have some kind of resource for you...but if you're like me, you can't help but feel bad when everyone looks at you like ----"you're in your 20s, you should be in your prime!" oh, they couldn't be more wrong.


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