Hi Does anyone worry (because you feel so ill) that their symptons are something more sinister than Fibromialgia?

[lolatiger]

Iv suffered with Fibro for approx 6 years, most days are a painfull struggle but somehow I just manage to get by. But I do worry, if I were to get a more serious illness, say cancer, dementia etc how will I know early enough to get treatment if every symptom I suffer is put down to Fibro?

[wednesday_focker]

Hi Lolatiger

i used to feel this way, i mean when you have conditions that affect every system of your body, you think well i could be sittign with a brain tumour and its not migraines etc, then i decided that i was wasting my life away on worry, and not enjoying it , as best you can with chronic ilness.

While i was worrying, i had the sudden death of a friend he was 43 healthy and fit, or we thought, turned out he had a heart defect, that was never detected and dropped death .

And me who has sjogrens and fibro am still here , sad way to be jumped into stopping the worry, to lose a friend, but his death is not a total loss, as it changed me for the better

T x

[lolatiger in reply to wednesday_focker]

Thank you so much for answering my fear, as I have no-one who suffers with fibro to talk to this has helped a lot.

Gentle hug x

[sue247]

Your not alone with that fear I have many times over last 20yrs had same thought as you, the way i handle it is any new symptoms i discuss with my doctor after doing a little research on net sometimes, also you will have no doubt found that fibro symptoms, say, if you overdo it usually get a little better day by day so if as recently a new pain appears after a couple of weeks still giving me probs i went to doc and ended up with a tummy ultrasound, and guess what all put down to muscle probs but hey i asked about it. take care sue x

[Ang01]

I agree with Sue, if its a new symptom or an old one that is much worse it is worth discussing with your GP as you can't always assume everything is down to fibro. Take care, Angela

[nutzieone]

I totally agree and you are not alone! I've struggled with various problems for over 20 years also and all tests came back clear or with something relatively minor! it took me finally seeing a rheumatologist who cared enough to look at me as a whole person and examine my tests, etc! I had been misdiagnosed with RA for 3 years and was on very dangerous medications (especially for someone who didn't need them!). I'm not "happy" I have fibro but I guess things could be worse! I did have an incident recently when I went to have my smear test and also have a coil put in due to very painful and heavy periods......when the doc went to do the smear first, she couldn't find my cervix! I don't know where it could have gone as I've kept it with me all my life! lol! But on the serious note I now need to go have a pelvic ultrasound to check all si okay! I tell you though, when she was "searching" for my cervix and also doing an internal exam - - OMG, it hurt so bad. Seriously, it hurt worse than childbirth! I know that seems silly but I was in tears by the time she was done! I just hope now the scan is clear. Obviously I would like a visible reason for my pain, etc but I certainly don't want any other problems now! First scary thought was cancer but that is of course worst case scenario! Well, I have my scan on 24th April (so quick for the NHS) so wish me luck.

Anyway, I rambled a bit! wednesday_focker, you are not alone! Please msg me if you want a private chat!

Take care and best wishes!

Gentle hugs!

[siver52]

I did the opposite and ignored the pain in my left shoulder for a very long time. I ended up having surgery on it for calcific tendonitis. My doc said dont assume everything is related to fibro. But I try not to worry, I just go and see him regularly... I'm sure he tries to hide under his desk lol x

[Hidden]

yes def , i had symptons that were very odd to me and i thought i had something VERY wrong and was scared to go to the GP for nearly 2 years i just wrote all my symptons down then took them as i thought if it was something god forbidreally bad then if it did need treatment rhats nearly 2 years i had missed so i dont think you are alone there love to you diddle x

[Hidden]

i started getting really ill 3yrs ago but Ive had symptoms for over 30yrs, in 2009 I broke my ankle in a fall, and never really returned to good health in march of that yr I woke up one morning andmy entire right side was numb, I thought Id had a stroke, Id been to gp in 2006 with numbness on the right side of my face he told me migraine, anyway 2009 was a nightmare it quickly deteriated with all sorts of symtoms and mobility was gone gp thought possibly ms, saw a neuro he did a few reflex tests and said cfs

gp then asked for 2nd opinion again neuro said cfs but agreed to mri, they found Id broken my back and had cysts on my spinal cord[syringomylia]but no sign of lesions

over the last 3yrs my mobilty is awful, im doubly inconitent, have preblems with sight and the pains are horrendous, earlier this yr my phchologist dx fibro?

Im now getting a carer 3 times a day, a blue badge etc but still here with no real diagnoses I now need to see yet another specialist an orho surgeon as my left hand the fingers are bending in on themselves, so really I dont know whats wrong with me

I am waiting for an appointment from a nurse practioner provided through social services and hopefully she can get all the medics together to give me a firm dx

[Hidden]

I do . I think when you have an all consuming illness like Fibro you do develop a tendency to put any new symptom down to that ( which is why I asked a while ago if people report new symptoms or just assume it's the Fibro ).

I struggle to get to my GP because I struggle to leave the house, so I then tend to sit and worry if I develop a new symptom. Having said that, when I started getting chest pains a couple of years ago I did get it checked out . And when I started bleeding from the rear end it scared me enough to go for tests too.

I tend to find that having been through so many tests and then having it all put down to FMS I'm reluctant to keep going back, they never seem to find a cause and I get tired of it all. It's a strain for me to go to hospital for tests because I'm agoraphobic so it's only when something scary happens that I now seek help.

Sometimes I just want to get off the medical merry-go-round .

Hugs

xx

[Abbeystead in reply to Hidden]

Helen,know exactly how you feel. Doctors just dont want to know. Everything is put down to FM now. I too am agrophobic, but even if I wasnt, getting around walking is too painful. Luckily I have my husband.

Car only knows three commands, Hospital for me and Tescos, Football match (Anfield) for husband. Need new glasses and need to go the dentist but find it all too stressful. One lonely existence I know but what can you do? Have convinced myself I have something more sinister and they are missing it but then console myself my thinking that if it was something really bad I would have kicked the bucket by now!!

But its nothing to be ashamed of. Having to live in this constant pai,,both physically and phsycologically (?) is no fun and who can blame us for thinking the worse.

Hope this helps you a bit in knowing you're not alone.

Avril

[Hidden in reply to Abbeystead]

It does help Avril, but it makes me sad too that other people suffer the same thing .

I've just registered with a new GP ( 3 weeks ago ) and apart from a visit to set up my repeat prescription I haven't worked up the courage to tackle them about my multiple health problems. The very thought of it fills me with dread . My last GP had known me all of my adult life and I now have to start again, and I don't know what to expect .

Our car rarely leaves the drive , Rich has a van he uses for his business but the car is a 55 plate and only has 9000 miles on it... in the 14 months we've had it, we've put 2000 miles on the clock because I just so rarely go out . I used to be OK in a car , but in December 2010 we had an accident where we were shunted by a young driver and since then I panic if I'm in the car .

I worry about all kinds of things with my health , but I have to be in an awful lot of pain now to venture to the docs... and I know this will go against me when my DLA is up for review because since I've moved I don't even have a specialist . I think the same as you though, I've been ill so long and I'm still alive , so it can't be anything too serious .

xx

[Abbeystead in reply to Hidden]

Helen.Hope you have more luck with your new GP. Know exactly how you feel, having to nexplain all yourmedical details all over again. You feel as though you are taking up all of their time,but we shouldn't feel like that as they are there to help us. I usually write a list and take it with me. Doesn't seem to do any good though as they just seem to come up with the same speel and same painkillers. Like you I'm fed up going now. I get myself into such a state before I go that I have to go the toilet about 6 times before I go. Just go to bed now and knock myself out. It's hard on our other half as well. My husband sometimes goes away for a few days but always takes one of our daughters or grand children with him. Although I dont like him going I realise its not fair on him to have no life either. I just about manage i.e.take my breakfast up to bed with me the night before (only cereal and some milk so I dont have to jump up early or have to take pain killers during the night).Should have gone to my grand=daughters wedding last week but just couldn't face it.Fee lsorry for you having that new car and not being able to use it.You want to get out but feel there is a glass wall in front of you stopping you from getting through it.Thats the only way I can describe it.

Any time you feel low just email at [e-mail].

Bye for now.

Avril. (Thank god for TV)

Try ot to let it get you down.Easier said than done though eh?

[lovelylea in reply to Abbeystead]

For years i was agrophobic after my mother died in 88 at the age of 48 with cancer and with me having fibro/me and coming up to the age of 48 im thinking i'm next on the treadmill. Life can be hard to live with, without been ill a long the way xx

[diane63 in reply to lovelylea]

i am like that.. my mum died at 48 with motor neuron disease and i have just turned 49 so i worried for over a year... kinda still worry... hope ur ok today xx

[Hidden]

I have a phobia of gps and hospital[mainly due to a mother who always pretended to be ill] I put off going to gps for ages, ive broken both ankles twice and never went to hospital unti I broke one 3 yrs ago and was forced to go, but now I have a new gp , and Im now going regularly, I cant put everything down to fibro, and if I cant get out to them they do a phone consulation or visit

[Ang01]

I dont mind going to my GP but hospitals is another matter since I worked in one for 10 years!! x

[grandmama6]

I used to worry a lot so many symptoms its no wonder, My GP wasnt very understanding at first so i printed off a symptoms list ticked off what applied to me (most) he s more understanding. Had bladder problem recently was told at hospital it could just be fibro, but iv been given loads of tests and its not fibro related. We cant allow drs to blame everything on fibro

[Gracie59]

My doc blamed my worsening backache on Fibro. A year later she ran some blood tests and ordered a liver scan. I had a gallstone! The surgeon who removed my gallbladder said it was large and inflamed. Backache reduced by 50% I would say. We can't always blame everything on Fibro.

[shetlandlass]

HI i have just joined i am so glad i am not on my own feeling like this my mother was always ill but the she started with pain all over it turned out she had cancer and died two years later i am worried and keep askeing my doctor for reasurance but they keep telling me it my fibro but how do they realy know i am in bed most of the time the other day my leg gave way and i fell down the stairs my doctot said i was lucky i didnt break something but its flared my fibro up and i am in so much pain i cant getout of bed so i am so grateful i have found this site its help alot as at the moment i feel so sorry for myself thank god i have got such a good husband love to you all carolx

[lovelylea]

I worry day and night, my mother died of cancer in 88 and she was 48, im 48 this may and having FIBO/ME i check with the doctor all the time what are the chances of me having cancer, he thinkd im mad. I only go out when i need the doctor, hospital, and shopping. I'm so sick of this illness times i have thought about not being around but i'v a lovely husband who does everything he can for me xxx

[diane63]

yes i do... my mum her brother and now her sister have all died of motor neuron disease.. and i do worry that is what is wrong with me.. i did go for gene testing but that is when my aunty died and i never went back.. i really need to go again to see if it has passed down generations.. also .. so strange u asked this question as i was on u tube last night looking at symptoms of MS... strange eh xx

[Sammicat15]

misdiagnosis is always a worry, but we should push on and not worry unless or until we have to cross that bridge. My proper diagnosis took 10 years and I've lived with both my conditions since 1997. Both my parents went from cancer and the incidence in my family is high. Meanwhile, I'll do what I can when I can as that takes all my energy!

hugs to you all for the worries you have to deal with. Life is certainly not fair xx