Anyone have Fibromyalgia?
toogoodfortv
Posts: 6,536 Forum Member
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Anyone been diagnosed or suspected of suffering from it?
I've been having such a terrible time this past year with pain in the mornings, stiffness, inability to actually do stuff because of fatigue feelings, exhaustion, feeling constantly ill and tired, run down - it's made the mornings really unbearable for me and I'm so so fed up of it ...
I read an article about Fibromyalgia and it seems like something I can relate to...although there's a lot of symptoms (over 60 :eek:), I feel it's something that describes exactly how I feel all the time ... The article talked about an educated, ambitious, hardworking and tireless person being robbed of their ability to work, clean house, exercise, think clearly and ever feel awake or healthy! - that describes exactly how I feel ... I've worked hard to get a first class Hons, I'll be starting back to my job where I worked very hard and earned the respect of senior management, enough to discuss options for promotion, I've always been fit, competing in many sports, lived life to the full - until last year (around this time) when I got really stressed at work .. ended up going off for 2months then started back to uni and stopped work .... I haven't recovered at all, but feel completely worse off than I was before ... no matter how hard I try, I can't seem to get a grip of feeling like I have energy
I'm actually really embarrassed by how much I've changed, both mentally and physically (I've put on about 3 stone) ... because of my reputation I had before (Athlete who was heading up in my sporting world) ...
I'm obviously going to go chat to the doctor, but from what I've read, it seems like a difficult condition to diagnose ... obviously I'm only speculating on what the heck my problem is, but I feel like the doctor will just send me off with the explanation of lack of sleep and that's it (I'm a bad sleeper, have been since my A-Levels over 6 years ago) but it's not that I don't sleep enough, I just sleep at the wrong time... ah I dunno - I'm rambling now ...
Anyway - anyone have any experience of this condition - if so, how was it diagnosed (I know there's no tests yet but how did you doctor decide on it, or did you approach the doctor to inquire about it?)
I've been having such a terrible time this past year with pain in the mornings, stiffness, inability to actually do stuff because of fatigue feelings, exhaustion, feeling constantly ill and tired, run down - it's made the mornings really unbearable for me and I'm so so fed up of it ...
I read an article about Fibromyalgia and it seems like something I can relate to...although there's a lot of symptoms (over 60 :eek:), I feel it's something that describes exactly how I feel all the time ... The article talked about an educated, ambitious, hardworking and tireless person being robbed of their ability to work, clean house, exercise, think clearly and ever feel awake or healthy! - that describes exactly how I feel ... I've worked hard to get a first class Hons, I'll be starting back to my job where I worked very hard and earned the respect of senior management, enough to discuss options for promotion, I've always been fit, competing in many sports, lived life to the full - until last year (around this time) when I got really stressed at work .. ended up going off for 2months then started back to uni and stopped work .... I haven't recovered at all, but feel completely worse off than I was before ... no matter how hard I try, I can't seem to get a grip of feeling like I have energy
I'm actually really embarrassed by how much I've changed, both mentally and physically (I've put on about 3 stone) ... because of my reputation I had before (Athlete who was heading up in my sporting world) ...
I'm obviously going to go chat to the doctor, but from what I've read, it seems like a difficult condition to diagnose ... obviously I'm only speculating on what the heck my problem is, but I feel like the doctor will just send me off with the explanation of lack of sleep and that's it (I'm a bad sleeper, have been since my A-Levels over 6 years ago) but it's not that I don't sleep enough, I just sleep at the wrong time... ah I dunno - I'm rambling now ...
Anyway - anyone have any experience of this condition - if so, how was it diagnosed (I know there's no tests yet but how did you doctor decide on it, or did you approach the doctor to inquire about it?)
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Comments
Fibro.. whatever.. call it whatever you want, you don't have a disease. your getting old. it's natural.
ignore the internet, it's full of nutters like me. go out and enjoy life for what it is.
They had both gone from active people to obviously being in a lot of pain when just doing simple things. The pain of a night keeps them awake so they are permanently exhausted.
They have both been seen by a rheumatologist and he has made the diagnosis.
You need to see your gp and get some basic blood tests to exclude other causes of your symptoms.
Why do people make comments when they clearly know NOTHING about the condition? The OP didn't even state their age, but from what they said about A Levels 6 years ago, they're in their mid twenties...
I find that stretching and relaxation helps. It's probably age related although it started in my mid thirties.
OP Please ignore this ill-informed rubbish.
Support here,
http://www.fibromyalgia-support.net/
Discussion here,
http://www.netdoctor.co.uk/interactive/discussion/fibromyalgia-sufferer-with-questions-t40504-f19.html
I went to the doctor complaining about symptoms of tiredness to the point of exhaustion, although I would get some sleep, it never felt like it was doing any good as I always felt as tired in the morning, headaches, stiffness of joints, especially in the morning and pain which moved around my body, one day it was my neck, the next it was my lower arms. She said that we couldn't do a text for it, but we could do tests which would rules everything else out. She sent me off for some blood tests, which all came back clear. I said that I was still having the same symptoms and she sent me off for more in-depth texts, looking for signs of arthritis among other things. They also came back clear.
She asked me to go away, research Fibro and gave me some websites to look at and prescribed me low level medication to see if that would help.
Six weeks later I was back, I said that I felt my symptoms fit the illness and we went through my list again, this time with other things that I had not noticed before, like I was more clumsy, I would often lose my words in the middle of a sentence, or forget what I was talking about at all. My doctor then confirmed that I had fibro. She said that we would work together to get my sleep under control as this would then allow me to tackle getting more exercise.
It has taken about 6 months to get my medication to the right level and I am now feeling the best I have felt for just over a year.
Fibro is a horrible illness, it steals your energy and can make you feel worthless. But I have learnt to fight back. Instead of getting my son to fold the washing, because I was too tired, I now do half and he does half. I am starting to get my life back and although I will always have to fight this, I am now very prepared for that.
OP, http://www.ukfibromyalgia.com/ is a great website for fibro sufferers, loads of information, advice and support. It's a long journey, but you can get well and learn to live with it. It doesn't have to take over your life
I'll def make an appointment for the docs ... I'm just worried they will fob me off as they usually do .... Trough ill definitely insist inion blood tests to test for various things that it could be.
Im so fed up with having no energy to do the simplest of things. I definitely need to get sleeping unde control and I'm desperately wanting to get back into competing in sport ... Though I know it won't be until next season as its too late this season.
My parents usually call me lazy, it's annoying cos I don't feel lazy in my head ... There's so much I want to do and I'm motivated to try and do things ... I just lack the energy to actually do them...
Once you have it, you have it for life and it's just a case of coming to terms with what you can/can't do with your energy levels (google Spoon Theory, it is a useful way of explaining to friends/relatives what is going on).
There are various meds to help. Citalopram can help with sleep patterns etc but then there are various other things to help with pain, ask your GP to be referred to a pain management clinic and they will go through the options with you.
One of the worst aspects is, once diagnosed with it, GPs are then sometimes happy to just pin everything else down to Fibro so it can be a constant battle depending on how other things are going.
Make sure you follow through having the tests and then getting the results and speaking to your doctor about them, and if you're doctor doesn't seem interested, see another. I've read loads of stories from people where its taken them four or five visits to the doctor to get some help. Be persistent. It's your health, and if it's not fibro it is better to find out what it is
Fibro focuses on the pain in muscles, nerves + bones + exhaustion; ME (CFS) pertains to exhaustion, tiredness after excercise, immune disorder, severe headaches, sore throat, painful lymph nodes, stomach pains/ IBS/ constipation/ diarrhoea/nausea, brain symptoms such as reduced memory + concentration + sleep disruption.
Everything you describe is very familiar.
I was also athletic + now know that overtraining can surpress the immune system. Particularly if you are working hard at the time as well.
You definitely fit the personality profile of people susceptible to these illnesses.
With ME(CFS) your sleep patterns are majorly disrupted, so don't blame yourself as the illness affects the parts of your brain that govern memory, concentration + sleep. You wake up feeling terrible in the morning + unrefreshed.
I also put on weight when I first got ill (I've lost it all now so don't worry it will go). This is because your metabolism slows down with your body's tiredness + also because when exhausted you eat more to compensate).
There's a fantastic ME (CFS) unit at Kings College Hospital in London. Ask your GP to refer you there for diagnosis.
I saw a Fibromyalgia specialist at Guy's but while he confirmed the diagnosis, he only suggested '2 hot baths a day for the pain' + an epilepsy drug the doctors at Kings said wasn't very effective.
Also check out the website for the 'Gupta Amygdala Retraining Programme' devised by a guy who got ill with Fibro/CFS while studying medicine at Cambridge. Many people have found it helpful.
Feel free to PM me.
With this type of condition - if it's managed well and you know, you eat healthy and exercise, will the symptoms be reduced? I'm really hoping that it's maybe something else that is causing all my symptoms and something that's easier to treat as what I've read so far sounds hard to deal with ... for my own mentality, I really need to get back to the slim, athletic me and get back into my sport - it's all I've ever known and my degree was sports science and I really want to work in that field...I'm just worried about not getting the weight off because off low energy and then not being able to get out there and do the jobs I wanna do ...
I had that tested before and it came back clear, howvpever I was told to get it checked every year and because my symptoms have got worse this last year, I think you're right, that I should get it checked too.
http://www.fibromyalgia-symptoms.org/forums/fibromyalgia_general_discussion/
I was diagnosed with fibro five years ago, but I had it for at least five years before that if not more. It is a dreadful illness, not least because people don't take it seriously and think that you are making a fuss about your aches and pains. I have had the most stupid and hurtful things said to me. I could really write a book on my journey with fibro.
The best thing is to get some blood tests done and if there is nothing like aneamia or an underactive tyroid (although these can be part of fibro and I have both), then ask to be referred to a rheumatolgist, who can diagnose fibro.
Just like you, mornings are the worst time, I feel dreadful and it is so hard to get up and get on. I was so ill with the pain in January, that the rheumatolagist put me on steroids for six months. I was on a high dose for the first three months and it was wonderful, I felt I had my life back and went shopping by myself and carried a bag for the first time in years. Then I had to gradually lower the dose so that in two weeks time, I will come off them altogether. I already feel so ill again, but you are not allowed to stay on steroids.
The rheumy suggested starting me on another type of drug back in May which is used in chemo and for auto-immune diseases (fibro is an auto-immune disease), unfortunately I was allergic to the drug so had to come off it. I will be seeing her again in mid-August to see what she suggests next.
Even though I have fibromyalgia, my rhuemy thinks that it is secondary to another illness. They recently found out that I have Sjogren's syndrome (look it up if you don't know about it), but even now she thinks I have something else. At the moment it is described as an undiagnosed auto-immune connective tissue disease.
I have all the symptoms you describe plus more. I can no longer do housework or cooking and it seems to have robbed me of my life. I often have to resort to a wheelchair.
Everyone is different though and some have it much more mildly than others. Don't underestimate the illness though and ignore ignorant people who tell you you are imagining it or to go for long walks etc.
I too forget what I am saying in the middle of a sentence and forget the words, it is all very frustrating.
I am rambling a bit now, but I wish you well in your efforts to be diagnosed. Keep us informed as to how things go.
I can't tell you the answer to this one as I am not a doctor. I just know that the rheumatologist I see said it was. It seems that there is some disagreement on whether or not it is classed as an autoimmune disease.
I feel too ill to disagree with you, but maybe if you look at lots of websites about fibro, you will find, as I have that there is some disagreement about it. It may well be that the drug I mentioned is for sjorgren's as I have that as well, my doctor doesn't always differentiate between which drug is for which illness.
The Sjogren's would probably explain why the steroids were so effective, as Fibromyalgia is not a condition that causes swelling, which is why doctors won't prescrible steroids or NSAIDS
I have both Fibromyalgia and RRMS (I thought when I was diagnosed with MS they would tell me that the fibro was a misdiagnosis, but no, I have both
Fibromyalgia is a horrible disability, don't let anyone put you down about it. And go to the website www.butyoudontlooksick.com as it is a site dedicated to invisible disabilities where the Spoon Theory originated. They have a great forum as well
Good luck xx
No thanks I'm fully aware of what fibromyalgia is. You seem to be confusing what your doctor is saying. Fibromyalgia is often a secondary illness, your auto-immune Sjogren's disease was being treated with chemo drugs (I assume methotrexate) the fibromyalgia is secondary to your confirmed auto-immune disease and possibly another yet to be confirmed auto-immune disease. Rheumatologist's don't treat fibromyalgia with chemo drugs as they are not approved,as its not an auto-immune disease, so if you had fibromyalgia on its own you wouldn't have received that drug at all.
I was diagnosed when I was 19 and I'm 33 now. I just wanted you to know that it can get better. At the point of diagnosis, I was in a wheelchair because I was in such a bad state. Medication never worked for me. The only thing that did was exercise. It was really difficult but I found that I was able to strengthen my muscles again so they would work for and not against me. Apart from the odd flare now and again, I am fine.
It's a horrible condition to deal with without the added BS of ill-informed GP's and people around you. I got to the point that I was going to punch someone for the usual ' but you LOOK fine...'
One other point I would like to make is, although it is not classed as an autoimmune disease, it is being investigated as a cause and many of the Doctors who specialise in the Rheumatology field are more inclined to think that this is the case due to the heavy links between FM and other auto-immune diseases. Of course, studies are conflicting. However, 15/20 years ago, no one could agree if FM even existed.
I would also like to point out that there are many drugs that are prescribed for off the label reasons. For example, anti-seizure medication as a pain-killer for nerve based pain. Also, chemotherapy drugs are routinely used when an early diagnosis of an ectopic pregnancy is made.
After stepping off my soap box, I really want to wish you the best of luck. Write down everything before you go to the GP. All your symptoms and how you are feeling. It takes the stress off you when you are at the appointment.
Wishing you well and feel free to PM me if I can provide any more info.