fibromyalgia: hi I just want to say... - Fibromyalgia Acti...

Fibromyalgia Action UK

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fibromyalgia

handsy1 profile image
8 Replies

hi I just want to say that fibromyalgia is very difficult to live with and people that don't have it look at you from the outside and judge you on what they see so trying to get people to understand is all most impossible. Symptom's I have I believe started from a young age I had bad nerves since a small child which I still have today and i am 48. Around 20 I started to get continuous pain in both my shin bone which eventually stopped me from doing any sports with out being in pain I also got pain in my feet so I couldn't stand for to long as it would become painful I tried to find out what the cause was but couldn't find one doctors didn't no what was wrong. After this at 26 years of age I woke up in the morning and felt restless on edge and didn't no what was wrong as I was fine the night before and didn't have any problems in my life that could cause me to feel like this so I decided to go to work early to see if I could shake this feeling off but it didn't work my symptoms got worse and it turned in to severe depression I have seen specialist for this problem and they cant find any reason for my depression and say it is most likely gens as my mother as depression i have had this problem for 22 years and the only reason why i am still alive is through antidepressant medication which as not cured my problem but as helped me have some small quality of life even thou its still been a struggle at times. As time went on I started to get anxiety on top of depression and there as been times when I didn't think I would make 40 but a had a wife and 2 kids and that made me fight to stay alive unfurtanaly as years went bye my wife ended the marriage and I lost everythink I had thought to achieve not for me but for them I was at the end of the road 6 years from paying off my mortgage all the suffering I had gone through for nothink it took a long time for me to get through this time in my life but I thought through it because of my kids. As time as moved on I started to feel aches and pains through my body trouble sleeping, feeling exhausted continuous headaches , bad nerves, dry mouth, pulsations, pains in back, neck ,shoulders, legs, feet, elbows ,fingers, feeling tired for long periods even when I have had plenty of sleep, my eyes are getting worse, I have no strength ,needing toilet more than normal for a pee, numbness in arms and legs. After going to my doctor on more than one a occasion i started looking for answers on the internet and when I read about fibromyalgia it was every think I was experiencing so I went to my doctor and told her what I think it is and her response was I think it might be more than that fibromyalgia is nothink so I had tests done mri scans, blood tests, sent to a physio every think came back ok so then I was sent a neurologist who diagnosed me with fibromyalgia you no that thing that she sees as no think lol. After reading about things that can help like exercise food you eat etc etc this are people that have no evidence to back up there theory's its just speculation not facts show me the proof. Some people might have milder symptoms than others but I believe that this is progressive and in time will get worse for those with mild symptoms .I also believe its caused through gens and it is a nerve disease which is caused through the nerves in your back, or from your brain to the nerves that's my opinion not facts . medication for this is a long way off in my opinion as the tablets available don't seem to work. As for trying to explain to someone about your illness i explain that its like tooth ache to the point were you cant stand the pain so you go to the dentist and have it pulled out to stop the pain, but I don't have that option I after live with the pain on a day to day basis amongst over symptoms of the illness so thank yourself lucky because you are.

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handsy1
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8 Replies

Hello handsy1, I once tried to explain how I felt by saying it's like having a very bad flu that doesn't go away along with sciatica pain popping up from time to time. They looked at me huffed and said, oh come on go to the doctor and get some meds. I've been trying to explain my condition to them for months. Some people treat me like I just want to complain so I don't talk about it. Take care. Chris

Hazel_Angelstar profile image
Hazel_AngelstarAdministratorFMA UK Staff

Hi and a warm welcome too our community. Here you will find information support friendship and laughter too. You can find general information on fibromyalgia at our main website fmauk.org

Shooby profile image
Shooby

Hello Handsy1 I really really honestly do understand what you are going through I have a husband and 4 grown up kids with kids of their own and absolutely DO NOT understand or neither do they care to I have printed off so much info for them to read huh it goes in the bin, what I usually get told is "it's OK it will go away" "oh yes I know what you mean, I've got sore head, neck, arm, back etc etc" and this is usually my hubby, the family are worse they expect me to do this and that, childmind, housework etc., I try again to explain how I'm feeling, Jeezo I'd be aswell banging my head off a wall (which I have done through frustration) I also have suffered depression, suicidal thoughts, to the extent I DO NOT wish to be here anymore, I cry all the time and each day or so there's something new hurting me. I just want to say I really do understand what you're going through, I'm sending you lots of soft hugs🦋🦋

handsy1 profile image
handsy1 in reply toShooby

hi shooby sorry to hear that you are getting no support from the people that are closest to you. It must feel like another kick in the teeth people just don't understand and don't want too you are a very strong person to have come this far with depression and fib and having no support by loved ones i can only hope that your family wake up and give you the support you deserve . hugs

Shooby profile image
Shooby in reply tohandsy1

Thankyou handsy1 that's really nice of you, I know that will never happen but we can only wish! Take care of yourself and know that this group is always on hand when needed. X👌❤️

MsJ1 profile image
MsJ1

Hello hansy1

Sorry to hear how your situation is....for me the only people who understand are people on here!

I can emphasize with you. When I'm at whits end with pain, family etc who dont understand and yet have expectations etc etc etc ..here is where I find relief.

At least we have people on here, we are not alone.

Take care of yourself x

Chockie profile image
Chockie

I know how you feel. I had M..E in my 40’s and now in my 70’s have Fibromyalgia. It took me 5 years to get rid of ME, no one understood, however I had a very understanding Medical unit at my place of work, the Doctor was very knowledgable about ME. I am now struggling with Fibromyalgia, you know you are in pain unfortunately it is only people who have it understand how debilitating it is, some days I am in so much pain I sit and cry, much better than reaching for the anti- depressants. Get your friends and relatives to google Fibromyalgia and they can read about it, it is not an imaginary illness. The day they can find a cure or know what causes it , we can put the flags up,

YASMINTINA profile image
YASMINTINAFMA UK Volunteer

Yes , you get sometimes when you meet people it’s easier to grit your teeth and smile as some of the answers I’ve had really don’t help. Mainly people say well I hope you get better soon grrrr, or some have never heard of fibro , but some many thousands out there with fibro I’m really surprised., and have other conditions like yourself, but can be helpful to talk here, at least people can understand what your going through on a daily basis and share some empathy xx

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