Fibromyalgia syndrome

Chunky Monkey

Hey guys,
I'm a medical student currently writing a paper on the patient's perspective of FMS.

I was wondering if any of ye here may be FMS sufferers? If you are I just have a couple of questions though I understand if you don't want to answer them.

1) Can you link anything in particular to the onset of your symptoms eg an emotionally distressing event or a time when you physically hurt yourself such as a serious motorbike accident?

2) What is the attitude of your GP? Do they take you seriously or tell you they 'don't believe in FMS'? How does their attitude compare to that of any specialists you may have encoutered such as pain management consultants or rheumatologists?

3) How do your friends and family view it? Do they call you lazy and say you sleep too much or are they supportive and understanding?

4) How do your employers and colleagues at work treat you? Do they ask are you faking your illness or do they try to lend you a hand when you are finding things difficult?

5) Do you have any little techniques of your own for helping to at least somewhat relieve your symptoms or do you rely purely on medications and physio appointments?

6) Are you part of a support group or do you visit online forums such as ukfibromyalgia.uk to find others going through the same thing as you?

Sorry if these questions are too personal. If you wish you can reply to me in a PM. I will be treating all replies in the strictest confidence and will not use any user names if I quote it in my paper.

Thank you in advance for any replies.

tbh

dude, it's in the charter, in red

*
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In the best interests of the forum, I'm going to let this slide, but in future, please check out the charter of any forum you're posting in - we're not just making these rules for the craic, you know?

star-pants

I've just copied your post & put my answers in green, hope they're ok / not too long etc. I've no problem with further questions if it's of use

Chunky Monkey wrote: »

1) Can you link anything in particular to the onset of your symptoms eg an emotionally distressing event or a time when you physically hurt yourself such as a serious motorbike accident? Personally I can't think of anything specific, noticed pain when I was about 11, I would have been active enough, walking / ballroom dancing / tried gymnastics(didn't last long lol) other things you get up to in school etc.
My mother has been sick since she had me, and she was fairly sick when I was about 11/12 (in hospital for a few months) but I'm well used to her being ill.
(for the record I'm 26 now)

2) What is the attitude of your GP? Do they take you seriously or tell you they 'don't believe in FMS'? How does their attitude compare to that of any specialists you may have encoutered such as pain management consultants or rheumatologists?Well my GP sent me for xrays, blood tests, all that over the years. Initially he thought I'd got rheumatoid arthritis like my mother but I never had swellings and the count wasn't high enough in my blood to indicate it.
The rheumatology department in Vincents, to be honest? weren't great at all. I'd go in for regular blood tests & each time I'd be talking to someone else, who'd not a clue about my chart, one couldn't even read the previous consultants hand writing. I'd a chap tell me 'sometimes we just get pain' (as an answer). They didn't seem to care what I had if it wasn't rheumatoid. Eventually one of the nicer ladies decided they should try an ultra sound on my wrists, which then showed bad tendonitis in both of them.
Then the head chap came in, asked a few questions, prodded the specific areas required, handed me a leaflet on Fibromyalgia and said I had it, and discharged me for good.

My GP however, has always tried his best, he tried me on different meds and things, which didn't work but he was always willing to try and help or listen.

3) How do your friends and family view it? Do they call you lazy and say you sleep too much or are they supportive and understanding?Well my family understand, because my mothers been sick with rheumatoid n other stuff for years so they've seen how pain can affect you etc. But there's also an attitude of 'get on with it' that my mother would have for herself and thus I think I adopted. You just have to adjust really.
With friends, it's harder because they don't always see you unwell or can understand how it makes you feel. But you're good friends will usually eventually see some aspects of it and know you're not making it up or whatever.

4) How do your employers and colleagues at work treat you? Do they ask are you faking your illness or do they try to lend you a hand when you are finding things difficult? I think some of them just won't believe you're saying the truth, because it's not as well established as other illnesses and people have varying degrees of it, it's not always easy to convince people of the truth. I've had to strap my wrists up in work, or might be limping etc, if people ask I'll just say it out straight, but I don't go 'oh I've this horrible illness speech' I just say 'ah got bad joints' or 'have fibro, basically bad joints, sure you get on with it' type thing. Because I don't wear splints or limp for attention, I'm just trying to get on with my job and so I don't need to give everyone my life story.
Some might give you a hand if you're struggling, or if you say 'would you mind?' they usually help.
Generally if you explain yourself fully to a boss or co-workers they'll understand to a degree. I've openly said it in interviews that I have fibro & give them a brief overview of what it is, and I've been told they appreciate the honesty and the 'get on with it' attitude.

5) Do you have any little techniques of your own for helping to at least somewhat relieve your symptoms or do you rely purely on medications and physio appointments?I tried the medication route, didn't agree with me/too many side effects outweighing benefits, I don't go to physio either.
I've tried hydro things, I've tried exercise (basically I can only do very gentle exercise, stretches and small weights) and I try to walk as much as I can.
If I'm bad, I might just try and have an easy day. If I have to work or do stuff, you just strap up what you can and limp if you have to. Not a lot relieves the symptoms, hot water bottle on my hip or knee sometimes at night might ease the pain slightly.
Nothing works on my headaches, I might have them from a few hrs to a few weeks.
My stomach, I do have Nexium which I take when I'm bad, or just try not to eat certain things/not eat much.
My intestines/bowels, I have Colofac for if I'm bad/need to reset my system somewhat.
I only take those medications when I really really need to, because I don't like relying on them or taking them too often as then they'll just stop working.
The depressive side of things, well I see a psychotherapist and she's very helpful. When I have bad days, I just do what feels right that day, whether it be watch movies and keep to myself, or see if I can't get cuddles, or get out for a walk/drive. If I'm busy on a bad day, well... you just have to cope.

6) Are you part of a support group or do you visit online forums such as ukfibromyalgia.uk to find others going through the same thing as you?
Nope not part of any support group/visit forums. Not sure why, but doesn't mean I wouldn't investigate it.

Chunky Monkey

tbh wrote: »

dude, it's in the charter, in red

*
We as a forum are happy to help with research projects etc. whenever it's appropriate.

However, please note this important rule:

ONLY MODERATORS MAY POST LINK TO SURVEYS.

This shows the users that we've checked it out, and are cool with it.

So, if you've a link to a survey you'd like to submit to the forum, please PM the link to one of the moderators (listed at the bottom on the forum main page). We can then post the link for you, and ensure it gets seen.


Any surveys not posted by a moderator will be removed, and the poster banned for 6 months.



In the best interests of the forum, I'm going to let this slide, but in future, please check out the charter of any forum you're posting in - we're not just making these rules for the craic, you know?

Hi sorry I didn't mean it to look like a survey, but looking at it now I guess it does, sorry about that

Chunky Monkey

Star pants your answers have been incredibly helpful thank you (love your user name btw ).

That forum I mentioned seems really good. There seem to be a few people on there whose illness started when they were 11 too for some reason.

Again thank you for your answers. A lot of them are quite personal so I really appreciate it and hope you manage something to help in the not too distant future.

url

Im always happy to help people researching this as hopefully one day they will find a cure so here it goes.

1) no i cant link it to anything, in a way i think it was always there. Now when i look back to my childhood I see some characteristics, I was always very tired poor concentration and i remember if i ever had to walk far as a kid Id just stop and lay on the path because my legs would hurt. But the pain started to get really bad when I was about 14 and I couldnt figure out why.

2) hmm my gp, well ive given up on doctors all together and have decided to go it alone for as much as i can. There are 2 doctors in my practice one was fantastic and knew loads about fibro (she was american) but shortly after I was diagnosed she moved and the doctor that replaced her literally hadnt a clue. She thought it was all in the mind and sent me to councilling and put me on anti ds for depression not for the pain but i wasnt depressed, needless to say the councilling did nothing for me so i went to the other guy in my practice. hes not great yes he'll accept that its an illness but hes not willing to try things out and i sense that he doesnt truly believe in it so I only go to him now if im really sick. I went to two different rheumatoligists (sp?) before i was diagnosed, the first said i was just looking for attention and the other hadnt a breeze both of these were private hospitals so i went public and that when i was diagnosed at aged 17/18.

3) my mam is great, well tries to be. The problem is I always look well. For me the tiredness is worse than the pain. I got the pain under control somewhat after a year of physio and I was in tip top fitness and the pain never returned as bad, but the tiredness got worse. I did ask at one point did I have ME instead but doc assured me that since I had the tender points of fibromyalgia then thats what i def had. anyway back to the point yes my mam tries her best but I know i piss her off basically she has to do alot for me, other family members probably think that it has gone away, I dont talk about it as their attitude is well you dont look sick or tired and you able to do this that and the other so i dont bother anymore it just upsets me. Ive learnt who my true friends are and that has been one good thing out of it all.

4) well I have never worked, ive tried to get part time jobs but as soon as i mention it I can see it in their eyes that is a no no. Even with interviews for college courses I really have to stress that i can do it no problem (which is partly not true) So I dont know if im better keeping it to myself or telling the truth, if i kept it to myself id be afraid that it would come back to haunt me.

5) Ive yet to find a medication that will do anything helpfull. the only half decent thing I was on was an anti d called amitriptaline it stopped the pain but I was a zombie could literally sleep for 3 days straight.
I found physio very good, the physio i did was like going to a gym really, she really pushed me hard and i know I would never have done as well if i had have been alone in the gym. I couldnt do any exercise before that but she brought me from being only able to walk maybe 5 mins on the tredmill to doing a full hour work out. Sadly im not that fit anymore but I try to walk every day and i used to go swimming twice a week untill recently but I cant afford that now and i do feel the pain slowly creeping back in.
Im hypermobile and have to wear splints alot of the time. I have heard that this could also be a cause of fibromyalgia?? But my main problem as I said is the fatigue and i havn't found anything that helps that even in the slightest

6) Im not part of any supposrt group, the one in dublin Ive no way to get too but id be interested in it. There is an irish website fibroireland.ie which also has a forum but not many members. Their were a few of us when it first started over a year ago but nobody really uses it now.

Im 21 btw!

carrot_flowers

1) Can you link anything in particular to the onset of your symptoms eg an emotionally distressing event or a time when you physically hurt yourself such as a serious motorbike accident?
Sort of... somewhere around my preteen days I started to have severe back pain and random bouts of debilitating fatigue.Fortunately for me, I did my schooling in independent study (essentially homeschooling except you've proven yourself independent and so the parents aren't involved) so I wasn't on the strictest of schedules. It stayed like that until I was about 19-20, I was very athletic-trudging on through my symptoms-and working as a concrete loader for a home building store. I was the only female for obvious reasons, and I had started to notice my pain getting worse-my knees felt like they were burning when I walked the 2+ miles to work and back! One day, I was loading some rolls of 120 pound (not kidding) roofing into someone's car and my shoulder felt like it snapped. They sent me to urgent care, I had sprained it severely and was moved into a different department of the store. I tried to keep ignoring my symptoms, afraid the doctor would give me bad news (stupid thinking, I know). One morning I felt REALLY bad and when I went down the stairs to go to work I fell down them in weakness and literally could not get up. I had to crawl back to my bed-and the weakness didn't leave. I was walking on a cane for about a year when I could walk, and had to literally retrain my legs to walk properly when I finally got a diagnosis and the medication to manage the pain. It has been very severe ever since.

2) What is the attitude of your GP? Do they take you seriously or tell you they 'don't believe in FMS'? How does their attitude compare to that of any specialists you may have encoutered such as pain management consultants or rheumatologists?
I've seen a lot of doctors for it! I'm a recent immigrant here and have only seen my new GP once, though he is very empathetic. My original doctor who I was seeing at the time of my testing / diagnosis was in the States. She was very concerned but couldn't figure out what was bothering me-they found I had arthritis in my knees and ankles but the rest of my body was a mystery. Originally it was thought that I had RA or Lupus, so I was sent from specialist to specialist, and while most of them were empathetic, there were a few older doctors who told me it was in my mentality and tried to just dismiss me with a strong suggestion of psych meds. Once I got my diagnosis my doctor was still very caring and worked with me to find medications and treatments that helped me manage. My GP in the UK was very empathetic but I requested to be switched to him I saw another GP that tried to take me cold turkey off my medications, telling me that "we don't respond to things in that way in THIS country" ...grr... My doctors in Denmark (I've moved a lot, did I mention that...) took it seriously but didn't talk about it much-primarily I think because they didn't know much about it. I've only seen my new GP here once, but he is a younger doctor, thankfully, and seems to be concerned rather than dismissive.

3) How do your friends and family view it? Do they call you lazy and say you sleep too much or are they supportive and understanding?
Some people are more understanding than others. I had a lot of "friends" disappear from my life when I no longer had the strength to do the things I used to, and I had just a couple who were absolutely diamond about it, one of them because she is also a sufferer-which brought us even closer. My husband is of course empathetic because he also suffers from it-what a thing to share! My family (dad and brother-small family.) worry about me and ask a lot how I am feeling. It helped that the newspapers did articles about Fibromyalgia recent to my diagnosis, as this helped me explain what was happening to me and validated it to my loved ones.

4) How do your employers and colleagues at work treat you? Do they ask are you faking your illness or do they try to lend you a hand when you are finding things difficult?
N/A. I am unable to hold a job due to the frequency of me getting sick, as well as my ever fluctuating oversleeping/insomnia patterns.

5) Do you have any little techniques of your own for helping to at least somewhat relieve your symptoms or do you rely purely on medications and physio appointments?
I take cymbalta for pain management and bupropion for fatigue. Both of them help, to a degree of basic functioning (I can walk normally although slowly now, and don't have trouble getting up and going to the toilet anymore, ect) but nothing seems to return me to normalcy-and I've tried just about EVERYTHING, all kinds of drugs and treatments. My husband gives me massages to help me get to sleep at night and I make sure to take 30-40 minute walks a few times a week even if it feels like hell to maintain some degree of mobility.

6) Are you part of a support group or do you visit online forums such as ukfibromyalgia.uk to find others going through the same thing as you?

No, I've found it difficult to find other sufferers and/or groups in the areas I've been living, which is very hard for me as I REALLY want to expand my support network so to speak. My best gal friend (the one I mentioned above who also has FMS) lives in a different country-though we write and call each other all the time. I don't really know anyone here yet and so my husband is the only real life interaction I get with anyone who can relate. I hope this helps!!!