When someone else w/ pain judges your pain...

Rebecca - posted on 06/14/2009 ( 27 moms have responded )

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I have Fibromyalgia and it has hit me so hard. Well, I have a friend at work who says she has FM also. Mine seems much worse. I take meds, do therapy, have a TENS unit and yet still am barely able to work about 5-8 hours a week. She does not take meds, or do anything else for her pain (except for some Tylenol) and yet she works 40-50 hours a week. She keeps saying that the reason I do not work as much is that I do not HAVE TO because I am married. She HAS to work because she is the main breadwinner in her home. I need to work 40 hours but really can't! She doesn't understand this. She thinks that I am just lazy or something because I can "afford" to. I really can't afford it. Does anybody else deal with this type of judging from others who "should" be more supportive since they have pain to?

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Jessica - posted on 06/29/2009

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Yes, I understand and have to deal with the same issues as well. I'm a 30yr old mother of 3 and also have fibromyalgia. I hate it when people tell me that they know someone who has the same thing but its not as bad for them as it seems to be for me. Then they suggest things I should do and when I tell them I've already tried it and it didn't work, they tell me I must've done something wrong or I must have something else. You can't read about it online and understand it and think you know all about it.

Christine - posted on 06/14/2009

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i talked to my doc about this. i told him that i knew a few people with fibro and they were all able to take OTC med and get help. OTC meds don't even touch my pain----even the darvocet i used to take doesn't touch my pain anymore. when i told him my sister-in -law has had fibro since she was a kid, but doesn't need the stronger meds like i do, he looked at me and said, "maybe SHE doesn't have fibro." it made me feel better, regardless of whether or not she has it.

Margaret - posted on 06/14/2009

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yep........ignore them its ignorance



not everyone is the same not every case of fibro or endo is the same...



I was lucky I can still have children.....my cousin can't she doesnt experience as much pain as I do from it because she could take much more drastic action earlier as there was no chance of her conceiving and they knew it. peoples bodies are different their pain thresholds are different. my pain threshold is extreme...



:D the hospital don't like the fact that it is because I don't seek our help until it is literally debilitating and I am at risk of serious injury and complications. my physio in darwin 2 years ago was at one point begging me to have a hysterectomy ASAP in order to not do more damage to my back by mistaking the pain for the endo.



I havent though my partner and I do want to have one last child if it is still possible.



bruces Pain threshold is also extreme....except when his fibro is bad.....then you cant even touch him due to the pain.



no two people are identical and various diseases and condition can manifest in multiple ways. nothing is ever so black and white.... the world is FULL of gray area's

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Margaret - posted on 07/07/2009

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lol have fun

I have given mine a job of cleaning up the disaster zone the girls and their father made of the play room when he came to visit the other week......they used all the packing boxes from our recent house move to build a monstrous cubby house which only survived about 12 hours.....and ever since I havent been able to get in the door due to the cardboard

Erica - posted on 07/07/2009

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Thats true gotta go my youngest just jumped on my oldest therefore the oldest kicked him in the mouth no he is bleeding on the joys of motherhood and raising two boys have a good morning

Margaret - posted on 07/07/2009

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yeah.....but its all good im doing it voluntarily.....I dont have a work requirement or expectation to look for work as part of my pension.....im that damaged they have written me off....took me 3 years just to get into this program.....and im only in by the tips of my fingers.....if I cant make it too the appointments because im having a bad day they will dump me for not being physically ready or capable to participate....

so I figure something is better than nothing and its a step towards where I want to be so im going to take that step and then look for the next step.

Erica - posted on 07/07/2009

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Nice isnt it when they tell you to get help help yourself up the shove you back down w/a cattle prod.

Margaret - posted on 07/07/2009

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yep something I have done all of my life to be honest.......the psychology will be further down the track, they are refusing to fund any courses higher than a cert IV

Erica - posted on 07/07/2009

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Oh I know I was a psych major grow up in a abusive household alcholic father passive mother and I the only one to stand up for all. So thats why I went into psychology but never finished I will eventually but money probs keeps that .You will get through .And Like I said before you will be able to spot and help those whom might not or can not help themselves.

Margaret - posted on 07/07/2009

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:) ahhhh the endless hours of an insomniac :)

yeah I dont underestimate myself....I am lucky I developed PTSD while caring for a sufferer of PTSD.....

so I learned how to deal with it while I developed it :S lol bit backwards but I think I am one of the lucky ones.

Erica - posted on 07/07/2009

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So true so true the same can and I AM SAYING TO YOU that YOU BETTER be proud of your self also .We can only be our own patient advocates cause who else will .Trust me I really REALLY want to flush them all down the toliet LOL. Have a good night I might actually get to bed before 1:30am thats a first

Margaret - posted on 07/07/2009

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im still like WOW....

you better be so proud of yourself

meds with those conditions are like pissing on a burning building is how effective they are!

Erica - posted on 07/07/2009

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Thats great I do speak to young girls about my situation and experience of abuse and rape in a (past)realtionship and that gets me through if it gets through to one just one that is one less.good for you getting back on your feet there really is a need for those whom have been through to help through. Best of luck to you

Margaret - posted on 07/07/2009

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:) life is what we make of it and I try to make something of it :) today at rehab we got everything sorted out that all the referrals and enrollments can be sorted so that soon enough I can improve my own management of my condition with self managed hydrotherapy (so I wont constantly be paying through the teeth to do something I can learn for myself) and some retraining :) for a new profession. lol likely to be a youth counsellor or aged care social worker actually....

so Im working at getting back on my feet again ;) its just a case of finding the right path to take.

Erica - posted on 07/07/2009

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Oh I know thatnk you its been hard and I struggle every day but I guess thats way staying here being here is why life is hard and worth livin plus I would never want to hurt my children that I why I am breakin the cycle. Again thank you and You TO will GET through.

Margaret - posted on 07/07/2009

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well to not be SI'ing or suicidal while dealing with chronic pain and those conditions stacked up behind you. its a monster of an achievement well done....

I hope you know with the specific conditions you listed....the fact that you arent SI'ing or suicidal is only about 20% meds and 80% you! even though it hurts I am bowing to you right now WELL DONE!

Erica - posted on 07/07/2009

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Oh I know I have been through the wringer w/doctors and specialists I also have ptsd,chronic pain, borderline personality disorder,anixety/panic attacks,and pelvic pain disorder. It is written in my file thankfully but it still doesn't help when you really want to be out of pain and you really don't want to be on so much meds its hard .I just got told to be taken off of a med that really wasn't workin today so its hard to deal w/ at times .But I have been am there .My psych might be stuborn but at least the psychological is stable and I'm not suicdial or self mutilating in well over 2yrs now .Just in frickin pain all the time .

Margaret - posted on 07/07/2009

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:S a psych who ignores your physical conditions....sounds as bad as the problem I have atm with my GP lol

he has a special interest in psychiatric disorders which is why we chose him for our GP. my partner has bipolar I have PTSD and my kids may have ADHD. and he is great for that....but when it comes to my unjuries they are a nonissue.....I have trouble even getting referrals from him and iv needed a new CT scan done for six months and he still hasnt written the slip for it to be done.

so I am currently trying to find a GP who has more than a little experience with conditions like arthritis and spinal injuries...I prefer us sharing the same GP as it can be alot easier having family visits BUT it seems the extent of my conditions and injuries scares my GP to the point that he is completely incapable of looking me in the Eye, and when he is asked to write a report of my current condition he forgets to put down ANY physical conditions and lists only the PTSD....:S he couldve lost me my pension if I hadnt double checked what he wrote in the report 3 weeks ago.

sometimes it is just worth finding a practitioner who is more suitable to YOU!

Erica - posted on 07/07/2009

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See thats my problem they finally got the right cocktail mix for my depression so we don't want to mess around w/it and unfortunatley the one doctor whom doesn't believe that I have Fibermyalgia is my psych so its kinda hard when your pcp and psych have different opinions on my conditions. I did find that Perchoits work well but I don't want to fel doped up all the time and they are highly addictive and that is another one of my faults is i have a highly addictive personality. I do yoga when I feel well even when I feel poor. I just wish that the medical community could decide on one opinion on the disorder and help not disagree . Thanks for some added tips I'll try them.

Margaret - posted on 07/07/2009

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different pain meds types seem to be more effective for different pain types. I have found.

for endo naprogesic was better than the codeine apparently it contains ingredients to reduce inflammation, reduce pain AND to reduce muscle cramping/spasm specifically, panadol (tylenol) is really only effective for muscle pain, fever and headaches, but it does also increase the effectiveness of codeine, and other prescription pain killers, particularly anti inflammatories.

Celebrex and cymbalta from what I have heard are both brilliant for Fibro pain. one is an antidepressant of all things, but it works for many people, while Celebrex is an antiinflammatory like Naprosyn or Indocyn, which includes side effects like reflux abdominal pain and complications over time. long term they can be worse than the condition (coming from experience I cannot ever take another NSAID).

then you have the Opiates, endone, morphine and synthetic opiates such as Tramadol (which also seems to work similarly to/has similar chemical structure to antidepressants and has a high risk of serotonin syndrome so cannot be used alongside antidepressants).

they work for the deep joint and nerve pain and intense abdominal pain, but I have found it pretty useless for headaches, muscle cramps/spasm and referred pain. but a panadol (mild OTC painkiller) taken with the stronger pain killer does alot to increase its efficiency and deals with most active pain areas allowing for not just reduction in one pain type but all. mind you they can't always be taken together its something you need to speak to your doctor about. in my case doing so has been advised at various times by all my doctors and quite often is the only way to touch the pain even with access to very strong pain killers, it can more than double the reduction in pain from the meds compared to what is achieved with the prescription painkiller alone.

Erica - posted on 07/07/2009

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I know what you are going through I use to be on the meds and did thereapy but unfortunately none of it worked tylenol would not even hit it with a ten foot poll. so I just deal w/the pain as best I can some days are good while like today my back and hip joints are flared up. And the difference in the way people persive me and my fibromyalgia is different from person to person even doctor to doctor. So at times you have to but feelers out to even know if people will understand. I've be way down at the bottom so far that they admitted me to the psych ward because I wanted to drive my car into a poll so that someone anyone could see my pain on the outside not just what I was feeling on the inside.

Margaret - posted on 07/02/2009

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it can be very disheartening to live with pain EVERY day, and to be lucky to find an hour where it is reduced enough that you can take care of yourself. I think you will find what you saw is her own frustration and anger at her own position.

Christine - posted on 07/02/2009

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i recently talked to someone who is really ill and she said she never gets to be free from pain. i told her that i knew i wasn't nearly as bad as she was, but that i also had days when i got no relief. she seemed to resent me telling her that for some reason. i found it a little strange.

Margaret - posted on 06/14/2009

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I will say though nothing gets rid of bruces fibro pain....pain killers work more on the cramping associated with the pain and the pain from the clenching and teeth grinding with it. the fibro pain is always there.

but there are times for bruce when a panadol will work for the associated pain and there are times it has had to be endine and morphine

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