Help Me Please

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I have been having the symptoms of this condition for about 5 months now and after A visit to my gp last week he wanted to run full bloods. These came back as normal today, but I ended up seeing another gp instead he now wants to run another full lot of bloods which I know will come back the same as these ones. Can any one help me in telling me how you managed to get diagnosed with this condition. It just seems an endless system of gps wanting blood and saying nothing is wrong when these come back normal, they said that they might refer me to a neurologist but this could take about twelve months, but really he did not see any point as he said there was nothing wrong. I am at the end of my teather now. Sleepless nights, hot sweats, the constant aching, the pins and needles, the chronic tirdness, trying to work and be a mum and a wife I can not do it any more all I do is cry as no one seems to be able to help. is there light at the end of the tunnel.

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  • Posted

    Hi Helen

    Where can I start. Like you had been experiencing lots of different pains and thought at first was osteoarthritis as had been diganosed with that in my toes. Not too sure how long mine had been going on but at least nine years until in June this year. I changed from seeing my normal doctor who I had seen for years and was lucky enough to find a gp who listened and finally referred me to rheumatologist. Had to wait three months for appointment but was worth the wait. I thought they were going to tell me that it was more osteoarthritis which it was in my knees. But he also felt for pressure points all over my body. Apparently there are about 18 and I had twelve. You have to have over a certain amount then they will say if is fibromyaglia. Never heard of it before then. Go back to see Rheumatologist in October. It was such a relief to finally at long last know what it was and have something done.

    Try asking if you can be referred to a rheumatologist who can tell you whether it is fibro or not. Sounds very much like it and can sympathise with you. Keep going back don't let it drop and you will get the help you need. I am now waiting to see physio in September for excercises to help joints and muscles. Don't know if will work or not but give it a go.

    Keep positive and come back on the site there are lots of other people I talk to also who an give you support.

    Hope this helps! :lol:

    Love Jane x x

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  • Posted

    Thanks for replying Jane. Just come back from GP after another 5 attempts at taking blood. They are not very good at it in my surgery have to wait till next tuesday now for another appointment to see gp and seee where we go from there. Will try to keep my head up but sometimes just feel like crying when the pain hits and trying to fight the tirdness.

    Helen

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  • Posted

    Hi Helen

    Hope you get a bit further when you go for your results. Did your doctor say what he was checking blood for. Sometimes they take the blood to rule out different types of arthritis or other conditions like lupus etc. Might even check your iron levels as well. I had lots of different bloods taken and then when they came back clear my doctor referred me to Rheumatologist. Hopefully yours will do the same. Try to keep positive and take one day at the time that is all we can do. When I went to see one doctor not my present one he told me we all have aches and pains go away and live with it. Didn't go back to see him again and was really angry.

    If you get frustrated just come on and let out your feelings.

    Take care

    Love Jane x x :o

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  • Posted

    Hi Helen

    How are you today. Hope you are feeling a bit more positive and not in too much pain. Not had a good day as woke with a migraine and spent all morning in bed. Lot better now though. Can cope with aches and pains but just don't like the headaches sad

    Speak to you soon

    Love Jane x x

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  • Posted

    Hi Jane

    Not doing so good at the moment. I did get my test results back from my gp and they were all clear so have to see him on tuesday to see if I can get refered on. I spent thursday night in my local A & E department after having a fall which left me with a badly broken and dislocated little toe. I had to have nerve blocks and gas and air to have it put back in to place somore pain to contend with. I have to be carefull that I do not knock it or I could put it straight back out again and have to go through the pain of it all over again. I have to see my surgeon on Wednesday as they are not too happy with it at the moment so will ask him about my mri for my discs but will spend most of the next week back and forwards hospitals and doctors by the look of it. They have given me a sick note for a week but it looks like it could be longer !!!!!.

    \\hope you are having a better time of it than me at the moment.

    Helen XX :cry:

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  • Posted

    Hi Helen

    Sorry to hear about your toe. Something else for you to put up with. Think its more annoying when its your feet as restricts you even more in doing things. I broke my little toe a couple of years ago and wasn't too bad just had it strapped to my other one. It was really painful at the time.

    Sounds like yours was more serious.

    I am still having trouble with my big toe due to osteoarthritis. Was going to see my gp on Friday but had a bad migraine so didn't go. Have to wait now until Thurs or Fri this week as he only does two days a week at the surgery. A bit annoying really but he is very good so don't want to change doctors not now I am getting somewhere.

    Just waiting for my physio appointment on 12 September couldn't get in until then. Don't mind as I shall be seen at my doctors surgery and not have to go into Peterborough that is the nearest place to where I live.

    We are 7 miles outside of Peterborough and I don't drive so would have to rely on my husband and other family members to take me.

    Hope you get better soon with toe. Keep strong with fibro!

    Love Jane x x

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  • Posted

    Hi Jane

    Have not slept much the past couple of nights as the pain in my foot has kept me awake, not to mention the pain with everything else. I have a problem with my feet any way as I had what was supposed to be a simple bunion removal on my right foot but it went wrong and I ended haveing the whole of my foot operated on four times all together. I have four very large scars that now run up my foot with a loss of feeling from halfway down to my toes with pins and screws now holding it together, and my good one is a size 6 and my bad one a size 4 !!!. I have been left with only beaing able to wear surgical appliance made shoes and a distinct limp and being registered disabled because of it, This obviously does not help my situation.

    Not much fun for a 34 year old .

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  • Posted

    Hi Helen

    Its no wonder you have not had very good sleep for two days with the amount of pain you must be in. Sorry to hear about your foot as well.

    Like you say not very good for a 34 year old!

    I am quite lucky as only had to put up with my toe pain for last couple of weeks although have osteoarthritis in it for about the last eight years. I am annoyed because once I was told there was some osteoarthritis in my toe at the time. I was never asked to go for checks on it with the rheumatologist or my doctors surgery. The doctor i see now wasn't at the surgery at the time and has been the one who has got the ball rolling for me. The other doctor i saw said I was obssessed with my joints when i saw him and i had to go away and live with it! sad I am now 52 so to me my toe has deteriated over the years.

    I don't drive so I rely on my feet as I do a lot of walking when I can.

    I hope you do get a better sleep tonight and try and keep positive.

    Love Jane x x :o

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  • Posted

    Hi Jane

    Still waking up with pains in my foot, and work have been on the phone asking when am I coming back in even though they have a sick note that covers me for over a week !!!!!!

    Hope fully though I will get some answers this week as to what might be my diagnosis. As far as seeing my surgeon on Wednesday I can see him putting me on the sick for a few more weeks yet, hopefully. I know I should not say that but I really do not want to go back, they think all my pains and things are all in my head even though I have provided them with surgeons notes and have cut back my hours too.

    Never mind hope fibro is not getting you down too much at the moment even though the damp weather is not helping a lot at the moment. I seem to be getting the main of my pain in my legs knees and my shoulders and neck is this usual.

    Keep your chin up and will speak to you soon.

    Helen xx :D

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  • Posted

    Hi Helen

    Must be hard for you with your employers not believing you. I don't work but have been looking after my granddaughter for nearly five years for my daughter while she is at work. As I am 52 anyway and luckily don't need to go out to work. I don't have that problem. I do feel sorry for you not being believed. My daughter has crohns disease and when she was working people wouldn't believe when she felt ill. That was because she looked alright on the outside but had bad pains and inflammation on the inside that people couldn't see. Luckily she has been really well for two and half years and is a qualified technician and training to be a paramedic.

    Yes most of my pains tend to be in my ankles, knees, and back. Although I do get pains in my shoulder and neck from time to time. Like you the damp weather isn't very good the pain seems worse.

    There are some other ladies on this side under different headings one is \"Time to start a new page\" who you could talk to as well. We all seem to chat to each other. I am known as Tess on there. I orignally logged on as Jane which is my middle name. Then talked to someone and put Theresa which is my first name. Then she started calling me Tess. So now I am known as Tess/Jane at times. :o

    So confusing don't no why I logged on with my middle name really. So you can call me whatever lol. :roll:

    Hope you get better night with your toe.

    Take care

    Love Jane/Tess x x

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  • Posted

    Hi you two. I don't have much Fibro, just a little bit, but I do have ME. I am over on the CFS/ME forum but sometimes I go visiting other related forums.

    Can I just say that I sympathise with you over the not being taken seriously, and also with your daughter who has Crohns. My daughter in law is 25 and has Crohns quite badly.

    The problem is when your illness does not show on the outside, it is the same with ME. No matter how bad you are feeling on the inside, to the world out there you look ok and so they just assume you are making it up or faking it. sad

    I don't get 2 days the same and even my friends wonder why I am out and about one day and using a stick and a disabled parking badge the next. If people who know us can think that how much more does the world not understand. :roll:

    This is why these forums are such a godsend. :D

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  • Posted

    Hi Alicia and Everyone

    Yes your right I just go from day to day. Yesterday felt quite well considering. But today feel really tired and totally different. Its raining her today and that gives me lot more aches and pains all over my body.

    Don't like the rain and damp weather. :cry:

    Wheres the summer gone. I was only moaning a few days ok I was too hot and now I am moaning its raining. Never get it right with the weather. :roll:

    Would rather have the sun though makes me feel so much better.

    Keep Smiling everyone and be positive.

    Love Jane :o

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  • Posted

    Hi Jane and everyone

    Just come back from my gp and he has written a letter to take to my surgeon tomorrow to ask him to refer me to a rumatologist (can not spell that) so it looks like the end might be in sight. Not sure of the waiting list but my gp said that it would be quicker for him to refer me than the gp so will let you know how I get on. The aching is not too bad at the moment but its the headaches that are causing me the problem along with the not sleeping with the pain of my broken toe.

    Hope you are all coping okay

    Helen x :lol:

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  • Posted

    Hi Helen that is good news for you at last! :o Yes are can cope more with aches and pains but its the headaches with me are the killer. :cry:

    Lets hope you don't have to wait too long to be seen.

    Don't like the rain we are having here at the moment making my muscles and joints ache all over :cry:

    Well try and get some good rest with your toe.

    Speak soon

    Love Jane x

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  • Posted

    HI everyone

    Just got back from the hospital and have been given a sick note for four weeks for my poorly toe. as well as having to wear a heel bearing shoe for four weeks, not very sexy and not very good for the beach as I am going away to port issac in cornwall for four days with no kids just me and hubby at the end of august and have to wear this shoe until at least 3rd september. Gave my surgeon the note from my gp to refer me to a rhumatologist (still cant spell it) and he muttered something but will have to wait and see what occurs, should have hopefully had an mri scan by then as well though so can hopefully find out all my ills at once!!!!!!

    Hope todays weather is treating you all well glourious sunshine here and so far not had a headache today and not too achy either.

    but it is still early. feel tired though so might just enjoy the garden this afternoon.

    Keep your chins up

    Helen XX

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