New and v confused

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New and v confused

Postby illandreal » Wed Jun 20, 2012 8:27 am

Hi, doesnt seem to take much to confuse me atm! I have LUPUS and this is a def diagnosis and nobody is questioning it OR any of the other things I do have!
Anyway had the dreadful appt of seeing a locum and he said he thought due to being a bit worse recently [ weird as have a known progressive condition !!!!] that I have this fibromyalgia as well.
He said there are no tests for it and it makes people feel ill but is not serious as it doesnt [ unlike LUPUS] cause any problems with joints, muscles or organs and cannot make me very ill as all my body functions would be normal with it but my body will think it is in pain and think it is v ill and weak..............it *is8 from the LUPUS so why would I be imagining it [ as he implies]?

My GP and rheumo nurses are horrified and annoyed but I dont know about this condition and it seems when you read people think they are indeed very ill but all the tests and so on are 100% normal as he said they would be.

I dont know and I am puzzled as to why he thinks I am slightly mad making up pains when I have a serious progressive condition which means I have major organ damage?

In NO way am I saying any of you are making up symptoms and would like to know why this condition like fatigue syndromes exists and what they say causes the things you suffer from if your tests are normal and your body can and will function normally if you let it [ HIS words not mine] but it cant because your brain wont allow it to. Is it a muddled diagnosis eg something they say when they cant be bothered to find out why you are ill or is it something wrong eg some chemical reaction or something as happens for people who are depressed eg having less of a chemical in their brain making them sick - but that can be measured and tested.

really ill and cannot wait for my Cons to come back and sort out my Lupus before I end up in ICU ventilated etc because of the severity of the damage this causes really does and not made up like he said! Thanks to you all and sorry it sounds so rude...I KNOW THIS IS real condition..DONT UNDERSTAND IT AT ALL! eg how it can be if what he says is true? Ta. Illandreal1
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Re: New and v confused

Postby saraha » Wed Jun 20, 2012 9:14 am

hi i also have fm as my secondary condition i have throaxic outlet syndrome as my first this is an extra bone growing on my first rib which pushes down on my nervers and blood vessels
i thought i was going mad untill i was diagnoised with fm even my GP thought i was making it but when the tested me it was liked i was finally getting somewhere and not actually insane :crazy: :crazy:
both of my conditions are hard to diaognoise which is why it has taken 3 yrs to get some answers
still tring to come to terms with all this myself
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Re: New and v confused

Postby illandreal » Wed Jun 20, 2012 9:53 am

Hi, sorry you have something else to contend with. I dont think I have this condition as my lupus is and has been rapidly progessing and makes me very ill indeed. this locum said some of the things fit with this fibromyagia but seemed to think it was mainly symptoms of being sad and low and not wanting to exercise and so on and so forth. I found it very insulting as I am not depressed and need a wheelchair or walking frame due to my lupus and assoc conditions. If he had listened to the number of times I have needed intensive care and being ventilated and so on and so forth maybe he would know I havent made that up!
My GP thinks it is nonsense too and so does the rheumo nurse who laughed1
thanks anyway. Illandreal
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Re: New and v confused

Postby shazq » Wed Jun 20, 2012 11:00 am

:welcome: to the forum illandreal :wave:

Sounds like your GP needs to read up on fibro :nono:

Its true that fibro does not show up in any tests thats why it can take a while to get a diagnoses because lots of other things have to be ruled out first.
Fibro does affect your joints, muscles,tendons it can effect your whole body.

There are different levels of fibro, some people might have it mild so they can control it with just pain meds & can carry on working & living their normal life where as someone else could be bed bound & need mobility scooters or wheelchairs.

If you have a good relationship with your GP you could print out the NHS web site explaining fibro because he should not be doubting it when the NHS clearly dont and he is working for them.
You will need him to be understanding if your symptoms get worse and you need medications. Here is the site-
http://www.nhs.uk/conditions/Fibromyalg ... ction.aspx

http://www.nhs.uk/Conditions/Fibromyalg ... tment.aspx

Hope it helps :hugs:
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Re: New and v confused

Postby illandreal » Wed Jun 20, 2012 2:50 pm

hi, thanks, dont think the GP and nurse are so much doubting this exists but why would I need a condition label of something which is not going to cause damage to my body in any way - it causes pain but it is not damaging major organs or systems in any way at all - I have a condition which does and is very serious indeed [ admissions to ICU ventialted etc etc are not being a bit off colour after all are they!] cant have any of the meds you might need such as antidepressants anticonvulsants and so on and have all my pain meds through patches and injections due to how ill I already am. fatigue and pain in Lupus is not the same as this and the symptoms I have at the mo are most likely due to major and severe changes in my lung function. awaiting some blood test results later and then off to hospital if I dont feel better. Wanted to try and understand what this is about - it seems it can be anything anybody wants it to be like ME/CFS and that is what he said [ consultant] not saying not ill just not ill with a condition which is going to cause death if not treated and dont recieve the correct care. Will wait and see what the lupus experts say soon as possible! I
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Re: New and v confused

Postby denys » Wed Jun 20, 2012 4:08 pm

Illandreal if you doubt the diagnosis then why have you registered for this site???? I find you posts quite insulting, others here have Lupus too and I understand how difficult it must be to have to live with it. FM is also a difficult condition to live with and is very very real as Shaz has said it occurs in differing levels and affects people in different ways

If you feel so strongly that you couldnt possibly have FM then wait till your consultant gets back and speak to him and dont stress about understanding the condition that affects all of us on this site :!: :!: :!:
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Re: New and v confused

Postby illandreal » Wed Jun 20, 2012 7:12 pm

Hi, apologies, scared, struggling and confused. just dont see what is happening at all. Maybe others with the same can say how it differs. I know the main differences but cannot see how adding another name for some of the symptoms of one condition is of benefit. Sure having fibromyalgia is hard but it is confusing me how someone can be said to be ill and have normal results.[ I dont] it must be a nightmare. apologies for expressing my fears in a bad way. Very upset now for needing my wrists slapped I
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Re: New and v confused

Postby FluppyPuffy » Wed Jun 20, 2012 8:44 pm

Whilst FM does not cause any physical harm/damage, it can cause psychological and emotional fallout, which for those of us affected by this, find that the effects of which can be equally, if not more than, damaging as physical problems.

Whilst you may be scared, confused and struggling, the manner in which you have approached the possibility of having FM will do very little to bring you any constructive advice. From what I have read, no one has disputed that Lupus is serious/damaging, yet you have suggested that what we live with each day is trivial in comparison. We're my problems as insignificant to me and the people who have treated me over the years, then surely I would not have been retired on health grounds and told that I will never work again :-? :-? :-? :-? :-? :-? :-?
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Re: New and v confused

Postby denys » Thu Jun 21, 2012 12:35 am

Yes we may not show damage on MRI scans and our blood results come back showing nothing obvious (though a lot of the time we are borderline on many of them) but that doesnt make our condition any the less real than yours, I wouldnt dream of saying to someone that their pain was less problematic or intense than mine as I have absolutely no right to do that, but then nobody has the right to say it to me either.

What are you confused and scared about, you were already dealing with having a diagnosis of Lupus so FM shouldnt faze you in any way as you say, your doc and nurses have disagreed with the locums diagnosis and many of the symptoms can be put down to worsening Lupus so if I were you I would forget the FM diagnosis and continue to deal with your main condition as you have been doing
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Re: New and v confused

Postby saraha » Thu Jun 21, 2012 8:57 am

i feel exactly the same way fm is my seconary condition but when i finally got my diaonoises it helped alot the way you are feeling could be down to fm as it likes to play tricks with your mind and adds additional pain i think you shold talk to a counsilor this really helped me to come to terms with this i am never going to be able to work again or get back the life i once led you are not alone in feeling like this :-) :-?
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Re: New and v confused

Postby illandreal » Tue Jun 26, 2012 10:13 am

thanks, spent a few days in hospital. on higher doses of some of my medication inc steroids and they have added in another drug which I had before & pleaded with them to stop due to the side effects [ chemo drugs are horrid as some of you will know] anyway that is it and this locum has listened to my concerns and looked at my blood results and the deterioration in many major systems functioning.
sadly there is nothing more that can be done re his other ideas for now but it makes no difference to my rapidly weakening body. I dont need to prove I am ill to him or anybody else and so I no longer care what he says.
hope you all improve soon. I
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Re: New and v confused

Postby MichelleJ » Wed Jul 04, 2012 10:19 pm

Illandreal, I've just read this and some of your other posts. Have to be honest, agree with the others who have found them insulting! Ok, you ave lupus and noone doubts its a real illness. BUT Fibromyalgia and cfs/m.e are real conditions too and are listed on the nhs website as such. I suffer with both fibro and cfs and can tell you that there is no way I could carry on with my normal life when they hit me. Believe me I tried, I stuck with my job, exercised, tried to ignore it but my body got weaker and more tired and left me no choice but to stop work. I also have tmjd (jaw condition which adds to pain)

I now can't walk more than 20 metres before my legs turn to lead and pain goes through the roof (point of onset I spent alot of my 8hr working day walking the streets and driving for my job). I have to use a mobility scooter, crutches and a walker to move around. My 7yr old is a young carer for me, not something anyone would choose for their child.

I get constant nerve pain, feel like I have glass stuck in me, feel like my shoulder is ripping out the socket everytime I move it, feel like I got hit in the ribs with a brick, suffer constant headaches and migraines, severe fatigue, have no tempature regulation and spend most of the day dripping with sweat and going from boiling hot to freezing cold. I have poor balance due to muscle weakness, have suffered several falls resulting in injury, cannot prepare a meal, have to have a seat in the shower and then rest for an hr after and only manage to shower every 3 days cos of the exhaustion. This to name but a few of my symptoms.

Fibromyalgia is partly diagnosed by the prescence of tender points but also other criteria. Cfs also has several criteria that have to be met for a diagnosis. It's thought to be a problem in the brain and the way it reads pain signals as found in research. Also low levels of serotonin.

I suggest you do some research (nhs website a good place to start) instead of implying its all in our heads, we're imagining it. I hope for your sake you don't have it as it can be a debilitating life changing life long illness that is hard to manage and leads to loss of quality of life. We get judged enough in our lives for having this without getting someone on here doing it. If you want to know about it you ask, don't come straight on and imply we're not really ill. My friend has been in a hospital bed for weeks with this and m.e several times so yes, while it won't kill us it can be serious.

sorry for the rant to the others on here but really upset to read these comments
Dx with fibromyalgia m.e/Cfs and asthma
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Re: New and v confused

Postby FluppyPuffy » Wed Jul 04, 2012 10:27 pm

Michelle, with the provocative nature of posts and comments this poster was making, it was decided that it would be better if they were no longer an active member of the forum.
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