diagnosed with fms three weeks ago but going on for years

Posted , 3 users are following.

sad Hi all

Just been diagnosed at last with fibro and osteo in toes and knees. No what is like to have pain in diffferent areas of the body. Been going back to the doctors for over 9 years now. Finally got some answers from lovely rheumatologist who checked for pressure points and said I had 12 out of 16.

Just getting someone to listen is the start. Not sure what happens from now got to go back in 4 months. Can get around ok at moment but do get days when legs and toes are sore to walk. Just had xrays on knees and hands because of osteo arthritis waiting for results.

Can't take anti=inflamatories as cause acid reflux. So can only take pain meds.

Will have to see what happens.

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  • Posted

    Hi there Janeamy

    I know how you feel, getting someone to listen to us is very hard to do!!! a lot of the Medical Professionals I have seen did not want to listen to me........ anyway I am not having a good day, I am unable to move my shoulder due to the pain, and some days I cannot hardly walk so it goes with the territory I am afraid!!!!!

    No meds seem to be working for me at the moment so I feel I have just to grim and bear it!!!!!! My GP I feel does not know much about this condition also and so I am waiting to see my Pain Specialist in August!!!!!

    Take care x

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  • Posted

    hi there everyone

    im still waiting on the hospital appointment been waiting 18 weeks doc asked again for emergency app or cancellation 6 weeks ago still waiting... i went to try on some sandles the other day the ones that go between the toes the pain that shot through my body when my big toe was moved to the side... does anyone else get pain from parts of there bodies that u wouldnt think u would... hope everyone is ok at the moment im still really bad in mornings i hate them so much...... speak to u all soon x

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  • Posted

    Hi Di,

    I am afraid fibromyalgia reveals it ugly head anywhere in our body?? for no apparent reason??? :oops: ........ My back went kind of \"BUMF\" yesterday and I was unable to move..... I had to sit still with a hot water bottle for about an hour before I felt it was safe to move......... went to see the doc today and he said I need a holiday....... Yeah I do but I am sick and tired of feeling sick and tired day in and day out....... when we have a \"good\" spell we over do it and then \"Wham\" we can barely pick a cup of tea up without ease!!!!!

    Anyway Di, good luck with your appointment, keep a diary and then present him/her with it this can help with your diagnosis x

    Take care x

    :cheerup:

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  • Posted

    hi ses

    What a good idea with a diary really have to get myself working on that one, my head is full of great ideas and i dont think i can remember half of them lol. i have taken up making my own cards which i enjoy but find it hard to sit for to long, i am really scared to go to the hospital, if anyone tells me there is nothing wrong with me i think i will just give up.. anyway hope ur back is better soon and try like me to keep smiling even if its false lol...

    take care

    di x

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  • Posted

    Oh Bless you Di xx :cheerup: ,

    Yeah I am upset my GP is leaving and I am left with the waste of space that you call a doctor..... I have made him a card \"sorry you are leaving\". The thing is I am so gutted as I think OMG what do I do now?....... I have to go and explain myself over and over again........ as he got the ball rolling by getting me x-rays done 18 months ago for my ddd........ :cry: So now I am going to fight to get a better surgery...... and as I have my second Support Group meeting soon I have asked a GP whom seems to have knowledge of \"Fibromyalgia\" is kindly doing a chat for my group, and if it goes to plan I may ask him if it is possible to goto his practice but I doubt it is possible as I am probably not in the catchment area!!!!!!!!

    My advice Di also is stand your ground as it is a minefield out there, there is many GP's and other so called professionals that may patronize you...... I do not want to worry you but I cried so much when people ignored me I felt like they thought I was imagining my pain........but anyway I am with the FMA UK and they are excellent, they have various information as well Patient has, all about FM so gain knowledge too as I feel If you know what you are talking about you may get more acknowledgment!!!!! Knowledge is Power as one of our PUK Members say!!!!!!

    Take care and yes keep smiling as that is all we can do!!!! :hug: xx

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  • Posted

    :o Hi Di

    I was lucky only had to wait for 4 weeks before I got any appt with Rheum. Like you I also get trouble with my big toe. Sometimes it seems to feel really floppy and the slightest bit of pressure and the pain is awful if I knock it. Can hardly walk when it is like that. Mornings seem to be worse for me as well.

    Going to see dr today as not sure if it is fibro and iron levels down making me feel rough. Same symptoms for both so difficult to work that one out.

    Had been on iron for about six months and felt better than I do now. Had to stop and been off iron for 5 weeks now but gradually feeling worse.

    Forgetfulness, breathless, tired, acid reflux worse.

    Hope you get someone to listen to you soon. Take partner in with you if you have one. Then what you forget they will remember. I took my husband in with me really helped and they can understand more what is going on.

    Take care

    Jane amy x x

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  • Posted

    HI there

    Janeamy [quote:89f65411ce] slightest bit of pressure and the pain is awful if I knock it. Can hardly walk when it is like that. Mornings seem to be worse for me as well. [/quote:89f65411ce] Fibro can be this....... Widespread pain in all four quadrants of their body for a minimum of three months. Pain is considered widespread when all of the following are present:

    * Pain in the left side of the body

    * Pain in the right side of the body

    * Pain above the waist

    * Pain below the waist

    * Pain in the neck, front of your chest, mid-back, or low back

    At least 11 of the 18 specified tender points of fibromyalgia. These are areas of pain on touch but without signs of redness, swelling or heat in the surrounding joints or muscles. For a tender point to be considered \"positive\" you must feel pain when someone pushes with their finger with an approximate force of 4kg (roughly the amount of pressure needed to change the colour of the skin). Some health care providers may use an instrument called an algometer during the examination of the patient to ensure that only a 4kg load is being placed. When my consultant did this I nearly jumped to the ceiling and I was covered in a kind of nerve rash (probably not related it was probably the stress?)

    I have had low levels of iron also as previously at the beginning of my pain and fatigue I was told I had \"inflammation of anemia\" not sure what this means even 18 month later? my sed rate is 35 too but this has no relevance to Fibromyalgia :roll:

    I took my husband to most of my appointments apart from one, and they made me feel like I was 2mm tall, the last was with my mum and I think she was very firm with the Consultant and so I got answers smile

    I get breathlessness and forgetfulness too, I told my nurse about my breathlessness and she said well Fibro can effect all muscles?

    Good luck also Di with your appointment xx Gain knowledge and then you can show them what you are talking about as at the beginning I just thought I was imagining things!!!! Be assertive xxxxxxx

    Take care everyone xx

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  • Posted

    Hi Ses

    Was good to hear about your experience and that your mum was firm and got answers for you. I was very lucky because rheum just took some info about what was going on then did the test. Then gave me booklet and went over what was inside. Sent me for some xrays because of osteo and go to see him again in October.

    Had a positive outcome with my gp very understanding. Said two ways I could go with fibro. Tablets or Hands on treatment. I said I would like to see physio first and see if that will help. Then consider more tablets later.

    Have you had water retention at all with your fibro. When I went to see rheum he said as well as some swelling round joints i had some water retention. Asked gp about it and he checked my heart for swellling and pulse and said was ok. So no need to take any more tablets that I was pleased about.

    Got to ring physio next week to get the ball rolling!

    Keep Smiling

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  • Posted

    Hi Janeamy,

    Yes I have looked about nine months pregnant as my tummy seems to swell? I have my Appeal soon for my DLA and I am so dreading it......... but I do have a representative with me :oops:

    I had Physio and thought it was useless, I was put on a biolamp and it helped the area it was located but everywhere else hurt also so I found it was a waste of time and effort attending!!!!

    So glad you had a positive appointment as that is good to hear, I think it helps an individual as we except the condition better! As we know it is \"Not in our head\" as that is how I felt before my diagnosis :oops:

    Hope you are having a good weekend x take care

    :hug:

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  • Posted

    Hi Ses

    Hope you get somewhere with your Appeal and it goes ok. Will keep my fingers crossed for you. Is any one eligible to get DLA who have been told they have fibro and osteo. Or is there certain criteria you have to meet. How do you go about finding out!

    Will see what happens with physio and if it doesn't help Fibro will try something else. My doctor seems to be keen for me to let me decide what I want to do. Whether it be tablets or alternative treatments. Physio will probably help the osteo I have in my knee and toes though.

    Had a busy weekend my daughter moved into her new home. Friday night had wedding reception to go to and just found enough energy for that but had a late night. Knew I shouldn't as could feel bad headache coming on. Woke up Saturday and had headache all day nothing would get rid of it. Still managed to help out but did have to go bed early Sat night. Woke Sunday headache still there so took paramax migraine tabs.

    They took headache away but left me feeling really drowsy and disorientated. Was suppose to go shopping with my daughter but couldnit go but by the afternoon felt lot better and did manage to help her finish moving her stuff. Mornings always seem to be the worse for enegy levels for me is it the same for you.

    Feel a lot better today just tired and had another late night. Must go bed earlier tonight.

    Hope you had a good weekend and aren't feeling too bad today.

    Take care

    Janeamy x x

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  • Posted

    Hi there Janeamy,

    There is no particular criteria as such as it seems (I have been told) its not what your diagnosis is it is how your disability effects you? however I have also been told if you \"just\" have fibro, then it is a hard battle?????

    I cannot make an evening meal e.g as the pan is too heavy as my hands are weak, or I cannot bend down to use the oven I cannot walk without being in pain...... but I had previously written I couldnt walk more than 10 meters and the assessor predicted I could, my argument is I am in pain 24/7 and when the weather fluctuates then I am worse still, this is what I have to prove!!!!! I have pain in my left hip even sat here typing this, I predict this is due to my Osteo too??? If you do apply get someone help you as it is a minefield :oops:

    I hope your having a good day :wink:

    Take care x

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  • Posted

    Hi Ses

    Thank you for the info you gave me. I hope you get your claim sorted.

    Surely it shouldn't matter how far you can walk if you are in pain all the while. I have pain at times when I walk but sometimes can walk a long way. Other times I have to push myself and walk through the pain. Everyone is different though. My wrists can all of a sudden go weak when I lift a heavy saucepan and then other times can be ok. I agree with you about the weather as my is always worse with wet damp weather. Its alright the osteo being taken seriously but the fibro should be taken as seriously. My children always laugh at me when I tell them there is rain on the way! The trouble is with both you don't know from one day to the next what or how the pain or walking will be like.

    I think if the people who decide on the disibility allowance had something like this themselves they would soon see why it is important.

    I find I don't notice my pain so much during the day if I keep busy. I am lucky I can walk around but there are times when my toe gives way without any warning. My ankles are really hurting tonight.

    Hope you are not suffering too much.

    Take care

    Jane Amy x x

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  • Posted

    Hi there Jane amy

    Yes I agree with everything you say if the disability board could live inside us for a week then they would know how this condition effects us physically and the point being it is with us for life...... I predict I will have to re-apply in a year or so anyways but the condition doesnt get better, the only thing is we have to get used to the pain!!!!

    My hip pain is severe today, I have pain in it every day but today it is bad..... I have had bladder problems lately and breasts are so tender they are awful, I went to the doctors and they have to be checked again to see if they are the same, he thinks it could be hormonal as he said that if there was anything serious the pain would only be in one not both, anyway I have to preserver with the un-comfortablenesses until I see the nurse?

    I hope your having a better day than me xx

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  • Posted

    Hi Ses

    Know what you been about bladder problems. It is a real pain if you want to go anywhere. Before I knew had fibro doctor said it was an irritable bladder and gave me a leaflet about training bladder. This was before I found my present doctor. I must admit it did help to try and wait longer before I went each time. Wasn't much fun you had to measure and see how much you weed. Each time had to hold it longer so the bladder would hold more. My problem was if I was going out I would go several times before I went so I would be alright while I was out. This was wrong because each time you go you irritate even more and you have to wee more. I always try not to do that now if I am going out. Try to hold it if I can for a while before going out then go and empty bladder better. Also wouldn't drink too much either. But find I can drink a bit more now if I do the bladder training. If not I used to get dehydrated to much and end up with headache. I too have tender breasts but am still going through menopause so put it down to that.

    Last night was bad for me my muscle at the top of my leg was really tender just to touch. Still sore today and achy today.

    Got to go for a blood test today to check my iron levels see if that is why I am getting confused and really tired. It not it is down to fibro. Have had trouble with my body not storing enough iron in the past and had to take iron tabs for six months.

    Hope your hip eases a bit for you. If we get aches above the hips and waist not quite as bad but still painful. But when it is our legs, feet and hips etc more painful because if do have to try and move around.

    Try keep positive.

    Best wishes

    Jane amy x x

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  • Posted

    Hi Jane amy,

    This illness is so annoying as we know it moves around!!!! I am aching badly in my shoulders today!!!!! and I have always had neck ache but now my doc has left the surgery :cry: I do not know what to do as he was the only one that listened to me! I had whiplash a few years ago and I predict the onset of the car accident brought the fibromyalgia on too........ as with my bladder problems that started after I got thrown forward on a bus and I nearly went through the windscreen, I have had tests done and my bladder is over-active or something and so I am taking oxybutynin to calm it down???? he increased the meds before he left as he said one tab was not strong enough so I will see? started taking them yesterday?

    I do hope you start to feel better soon as I have bouts when I am constantly drained especially last week when I had problems with my bladder? take care hun and thanks for listening xxxx

    :cheerup:

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