So, I went to my GP, having had muscular/joint pains for as long as I can remember. She did some blood tests to check for things such as gout or infection and these came back normal. She suggested fibromyalgia and referred me to a rheumatologist.
The rheumatologist poked me and asked me questions about my pain and my energy levels etc and I answered as best I could. The conclusion he came to was "you fit the criteria for fibromyalgia, but because it's associated with middle-age and you're only 20, I'm not going to treat you." Yeah. That's what he said.
I told the GP he said this. She was more helpful and gave me some information on how to improve my quality of life and said if I need anything like pain relief she will do what she can.
Anyone here have it? Got any advice? Sorry for ranting. =/
Thanks.
I have a friend who has it (she is 30). The rheumatologist doesnt sound very understanding, but least ur GP sounds helpful. I know my friend finds it helpful to excercise (when she feels well enough to) and eat a healthy diet too. Hope this is of some help x.
hi, I have have fibro. I was diagnosed a few years ago. im 34 now.
I take neurontin, its basically a med that stops nerve receptors and it helps a bit. Exercise is good when you feel up to it but I know thats hard. I also take a muscle relaxer which helps because fibro causes the nerves to go haywire and that makes the muscles hurt so the relaxer does help. you might mention this to your doc.
When I have a flare, I just have to snuggle with a heating pad and soak in warm water. They still havent come out with meds yet except for lyrica which my insurance doesnt cover.
I know its painful and frustrating that that most anything you do dosent help but keep your head up and try some relaxing exercises, if that makes it worse, dont do it. basically do whats best for you and keep working until you find it.
I don't have it myself (thought it was thought of a possible diagnosis for me at one point) but I know 2 people who have it and another one who at one bit was also believed to have it (I know a healthy bunch... we met on a pain management course at hospital). One of those is only in her early 20s and has had it a while, though it is getting worse. I was I think about 22 when they thought it may be a solution to problems I've been having for years.
I know a common med they use for this type of condition is Methotrexate. It's a chemo drug (so basically whilst you're on it you can't have kids and apparently it can also affect the a males sperm as well) used in tablet form and it can be used for rheumatological problems. However, I wouldn't jump to it and say to your doctor you want to try it as though it can make a big difference, it also isn't the nicest drug to be on or have around.
It may also be that Fibromyalgia is a diagnosis that, at least in the UK, at the moment rheumatologists like to throw around as every so often something 'fashionable' comes along and it's kind of like the new kid on the block which they can say it's that when often they're not sure. I'm definitely not saying it doesn't exist, it does, neither am I saying you haven't got it, you may have, but what I mean is that it may be the doctors want to hold on for a bit to see what else happens to see if they really think it is that or if it may be something else (someone I know was diagnosed with it and then they found out it was actually a sort of arthritis he has).
Anyway, yeah, I'm in my mid-20s and have had pain in my muscles and joints for literally as long as I can remember so if you want any support or whatever, though I've not been diagnosed with a rheumatological condition (or in fact any condition causing a lot of my problems) I may be able to help so feel free to PM me.
yeah i read in a book by a gp that they tend to diagnose FM when they have exhausted other possibilities, which means that most will have FM but others may have other conditions with no name or tests have come back falsely negative etc. he also said that pain management is hard as in most cases of FM the pain is a physical manifestation of an emotional problem - the pain is real but because its not something physical causing it, it can be hard to treat. Anyway that was this dr's take on it.
Mand, South Wales, Full-time working, single mother to 2 scarily independent girls.
I AM A PROUD PLUMERIA SISTER
My Mum has fibrmyalgia and has had it alongside arthritis for a long time. She takes amitryptiline to help with her sleep (at a low dose it is used for sleep) and some ibuprofen as and when. She has also been offered injections, which she refuses.
My Mum spends part of the year in Las Vegas, Nevada, as the warmer climate and low humidity help her a lot and she has a lot less pain there than when she is in the UK.
My understanding of fibromyalgia is that it can occur at any age, but is more prevalent in those 30+. Partly, as by that point, people have already been going back and forth with consultants for some time.
Roiben x
If the Human brain were so simple that we could understand it, we would be so simple that we wouldn't.
hi, they have been considering me for fibromyalgia recently, (I'm 21) I have been on methotrexate (for crohn's) and have just started gabapentin (also called neurontin) but have had to stop it due to severe side effects that weren't going away. The doctor now thinks the pain (my most debilitating being abdominal) is due to nerve damage from long term chronic damage to my intestines. Anything in them hurts a LOT. On PRN strong painkillers too. They wanted to start me on Amitriptyline for the pain but couldn't as it is an anti depressant, and I would need to come off my other antidepressant (which doesn't help pain) and only my psychiatrist can do that... but hoping to meet with her soon to start making the switch as I don't think my current anti depressant is benefitting me anyway. Sorry. That's a lot of waffle about me and probs not much help to you! I know someone who is a teenager and diagnosed with Fibro, I'm guessing from your terminology you are in England, and if so, you are entitled to a second opinion that this rheumatologist gave you. It is your right. Basically, not treating you cos you're not the 'typical' age sounds silly to me, (and typical nhs but that's besides the point!!) I would ask for a second expert opinion. -zips up mouth-
~~I'm FINE...on the outside~~
~~Beneath the surface lies a shattered heart and an exhausted soul, simply longing... just longing to be whole~~
I would reccommend seeing a chiropractor. Mine has such good advice and the adjustments really can help with the pain. There are also lots of different nutritional reccommendations he has given me to help with different types of pain I have. I do have other diagnoses that contribute to my pain and a lot is attributed to damage I've done with my ED, but he was a help before these findings when fibromyalgia was the main explanation of my pain.
I wanna stay inside all day
I want the world to go away
