Fibromyalgia

[Carkaisabellacolin]

Hi does any one know anything about fibromyalgia.

My doctor recently diagnosed this condition. I read abit about it but I really feel like it's seen as a mental illness. This worries me as my symptoms are very real .

[hypercat54]

I have a friend who was diagnosed with that and it's not really a mental health problem. For some unknown reason they get pain where others don't. I know very little about it but there is a fibromyalgia site on here so I recommend you put your post in there as well.

[Carkaisabellacolin in reply to hypercat54]

Thank you I will

[Troilus]

Hi!I will just start by saying it is NOT a mental illness.

I have cfs/me and the two conditions often go hand in hand, so, when I went to the RVI to do with my cfs/me, I was tested for fibromyalgia. This involved pressing on certain points on the body to see if it caused pain. Luckily, I only had responses on two points, so didn’t have it.

A friend of mine, however, does. He finds exercise helps and so he walks on a daily basis. He lives in Belgium where there seems to be a better understanding (and may I add acceptance) of these conditions, so he also has daily visits from a physiotherapist.

The problem here is that there is an incredible lack of understanding amongst the medical profession and the public at large about both conditions. Both can be incredibly debilitating.

Part of the problem, I think, is that because no one knows what causes them, the medics don’t know what to do with us! Medics, I have found, don’t like to say I don’t know.

However, the pain you feel and the fatigue are real. They are not in your head! You are not mentally ill.

I was very fortunate, in that I had a very good and very honest GP, who once said to me, the problem here is we don’t know what is going on, so I am reluctant to prescribe for you, for fear of making it worse. Lovely man, sadly (for me) now retired.

He also suggested I join a support group, which I did (online) which was very helpful.

I hope you don’t mind, but I have taken the liberty of searching for one for you.(cheeky)

I have never been on this site, but it looks reputable.

fmauk.org/forums

[Azure_Sky in reply to Troilus]

This site is indeed reputable. Prince Charles is a patron.

[Troilus in reply to Azure_Sky]

We’ll, good choice 😁😁😁

[Carkaisabellacolin in reply to Troilus]

Thank you so much it's been a long time struggling with all my other conditions coming to terms with them and feeling soooo tired still and aching. Amongst all the other systems stomach upsets and getting the same answers bloods fine xrays ok nothing unusual but defiantly still weak and uncomfortable.

After seeing a rheumatologist a few days I was a relief when he said he understood what I was explaining and that it wasn't in my head.

I really appreciate your message

😊

[Azure_Sky]

It really has nothing to do with mental illness. It a very painful condition. Yes sufferers may well get depressed but that’s a reaction. Not a mental illness.

[Carkaisabellacolin in reply to Azure_Sky]

Thank you it has been testing and I did wonder with having had a lung operation veins I thought maybe I was just imagining the pains but since I was around 15 years from when I really got sick with my lungs I had theses pains in my legs stomach and shoulders they were strange and my hands would ache . But my specialist at the time said it was psychological and looking over my notes he stated that many times.so I just chose to live with it silently putting it down to poor lungs etc.Trying not to mention the pain suffering in silence .

I can finally try to work through this not feeling crazy any more

😘

[Badbessie]

Both my wife and I have been diagnosed with fibromyalgia. It is very real. There is a support group on health unlocked and the support is very good.

[Carkaisabellacolin in reply to Badbessie]

Thank you I will try and connect with the group .It's all a bit overwhelming for me .

[katieoxo60]

Hello, how are you this morning wellish I hope. As others have mentioned there is a Fibromyalgia site on healthunlocked with lots of info . Many have also mentioned this is not a mental illness as for years people with it were treated as it all being in their head. Some doctors now treat it as an Arthritis . But from what I am told its worse than some Arthritis and can be very debilitating for the patient. Do seek out all info including some of the new drug approaches for symptom control, also there may be a group that does online meetings at present, sufferers often have better insight . Best wishes ,take care

[Carkaisabellacolin in reply to katieoxo60]

Thank you very much for your response.Today has been a better day as I have started to understand this condition a bit more.

Yes I thought it was like arthritis but really it isn't.

I really appreciate the kind support I always receive on this site.

Thank you

😊

[Badbessie in reply to katieoxo60]

Lol...I was not told it was in my head but I could not have it because I was a man! There are so many misconceptions it becomes ridiculous.

[Carkaisabellacolin in reply to Badbessie]

I agree with you .It's been a real learning process for me . One that I know its only the start.

😉

[katieoxo60 in reply to Badbessie]

Now that sounds like blatant sex discrimination to me. There are only a few illnesses to do with individual sex but I guess it saved the DR from committing themselves to a definate diagnosis till more facts were available.

[MoyB]

It seems to me that when the medical fraternity fail to find definite cause for a condition, by default, it becomes something that belongs to 'Mental Health'. Later, when they finally find a physical cause, they back track. Remember 'Yuppie Flu' ie ME. So many people were accused of 'putting it on' and I know of at least one teenager whose parent was in trouble with the authorities for keeping him off school for no good reason when, in fact, he was genuinely ill ( proved later). Things have changed as the condition has been properly recognised now.

I suspect that Fybromyalgia may be one of those conditions. However, the people who suffer from it really do experience pain and fatigue. I knew a lady some years ago who had the diagnosis. Much of the time, she was very active, just taking the occasional painkiller, but the pain and fatigue would become more intense every so often and then she couldn't really do much at all. She just used to rest and wait for it to pass.

I hope they are able to help you manage the condition. It is definitely not all in your head!

xx Moy

[Carkaisabellacolin in reply to MoyB]

When I hear the stories of others it feels more real.Like your friend I am active and really push myself but when the pain comes it can be really bad and I am knocked completely because it comes from know where . It's so good to hear that I am not imagining it and there are others like me.

Xx

[MoyB in reply to Carkaisabellacolin]

❤️Xx Moy

[katieoxo60 in reply to MoyB]

Hi MoyB you summed it up well , sadly this type of thing still goes on and even when its proved its not in a persons head they still go back to the mental health idea when your symptoms don't conform to the text book symptoms or text book recovery times. It is not a very nice journey for the patient when they are the ones in pain or with severe physical symptoms is it ? I hope anyone going through this learns ways like I have to live with the pain ect but mine is not Fibromyalgia so not sure how it feels when you have that illness . Only know that long term pain that flares up and down causes a person to have unstable feelings on occassions as well as the struggle to manage the long term symptoms and peoples attitude to an unseen symptom or illness.

[Carkaisabellacolin in reply to katieoxo60]

Yes it is a struggle that we have suffering with these illnesses that most of the time we have no control of and flare up suddenly.A saving grace is having others who understand what your going through .

For so many years I was told it must be in my head as they could often not find medical reasons but I knew I was in pain and suffering.

Finally I can try to work with this illness along side my other conditions.

[MoyB in reply to katieoxo60]

❤️Xx

[Caspiana]

No, not a mental illness. My sister has it. It is very real and can be extremely debilitating. Here is a link to some communities in Health Unlocked you can join for support. You are not alone.

Sending you a gentle hug and best wishes.

Cas xx 🙋🐕

healthunlocked.com/search/c...

[Carkaisabellacolin in reply to Caspiana]

Thank you 😊 really feeling better mentally as I was very low before so unsure but with the support these last few days I have started to feel such better not alone. Xx thank you

😘

[Gamblerps]

Hi Dear, I’ve have Fibromyalgia and Chronic Fatigue Syndrome for 18 yrs now. Went on SSD years ago due to it. You feel like you have the Flu you hurt all over. The fatigue is bad. Some days both are in full motion. Your exhausted just getting out of bed going to the restroom some days. It’s hard to deal with Mentally. You hurt so bad and are so tired you feel like your 90 yrs old. You learn on the light pain days and light fatigue days you play catch up on getting things done. Which I overdue it every time not knowing when I’ll have a decent day again. But I pay for it Big Time I’ll lose the next 2-3 days in bed. With my fatigue I can sleep 16 hrs straight . On treatment I’ve tried it ALL through the years. None of it Ever helped me except the Narcotics Prescription. I take Tramadol daily and Hydrocodone on my Bad days. It’s either that or have no quality of life at all. It helps enough to keep me going and functioning daily. Some days I’m still down due to the fatigue. I’ve learned on those days I just have to give into it. It’s not easy physically or mentally to deal with. Stress will definitely kick it into high gear. You will learn how it affects you and your body and what you can and can’t do, what triggers it into high gear, you will adjust your days accordingly . It’s a learning process to deal with it all. I wish you the Best of Luck.

[Ergendl in reply to Gamblerps]

Thanks for your clear description of how this affects you. Couldn't like your post, but wanted to send you a virtual (((hug))).

[Carkaisabellacolin in reply to Ergendl]

Thank you 😘

[Carkaisabellacolin in reply to Gamblerps]

Thank you so much for sharing your story it really makes so much sense now just how I have been feeling and why.Sending a big hug

Thank you

😘