Is anyone out there suffering the same as myself

Hi guys hope you are all doing as well as can be expected with this awful condition. I haven't been on here for months as things have changed so much for me and not in a good way. I was wondering if anyone has or is going through the same as myself. I do have fibromyalgia but 5 months ago I woke to a strange feeling in my legs and later that day I couldnt walk properly. By the next day I had tremors basically all over and walking was a disaster. I spent a week in hospital had a brain scan which thank god showed nothing. To cut a long story short I've since had a spinal MRI which again was clear. I am due to hospital this Thursday for a lumbar puncture and the following thursday for an EEG. I have got worse over the past month which has meant I'm having to use the wheelchair more than my crutches. Patiently waiting to see a podiatrist for the way in which I do walk which is with a wide gait and my right foot drags, pain from back to soles of feet is awful and I cant walk in a straight line at all I steer off to the left all the time and its all mentally draining. I attend physio every week which is very hard. I have a brilliant neurologist who I saw last Thursday. He says fibromyalgia can do this but is very rare and if these next 2 tests show nothing then i have to travel alot further to another hospital to see another neurologist. All I can do is wait but its worrying and scary. I was wondering is there anyone else out there going through the same or been through the same. I feel like am living some nightmare I still cant take it all in.

Hugs to all

kitty

17 Replies

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  • Hello Kitty,

    I am so sorry to hear how much you are suffering at the moment. At least it sounds as though your neurologist is listening to you, and is making sure that it is not something other than your Fibro. I am very newly diagnosed, so I can sympathise with your bewilderment and distress at how your body is behaving. I am thankful that I do not have such dreadful symptoms but I have some odd ones including muscular tics in my legs and buttocks. I have been reading a lot as you can imagine, and it seems that there are chemical changes in our neurological systems. If our brain is to send messages to our muscles, and get messages back again then we need the wiring to work effectively, and it seems that with Fibro that is not the case.

    I hope that a solution is found for your problems soon.

    (((( gentle hug ))))

    guardianlv.com/2013/06/fibr...

  • Hi oldncreaky. Love the name. Thank you for your hug and support. Can I ask you what muscular tics are please? I've done a lot of reading myself especially since this episode started but feel as I'm going round in circles and confusing myself. I find myself extremely lucky in the brilliant gp physiotherapist and neurologist I have here in northern ireland as reading others posts they havent been as lucky. I only wish you all did. I like the way in which you describe how fibro works its makes so much sense.

    Take care

    kitty

  • Hi Kitty, the tics are when a muscle decides to dance to it's own tune. Most people get them in their eyelids or eyebrows when tired or stressed, and I have had times in the past when I seem to be doing a nudge, nudge, wink, wink routine. Now it has spread to my legs and bottom; it is not like cramp because it is more like a fluttering feeling as the muscle twitches away rapidly but very weakly. I imagine it is like telephone interference and the poor muscle is getting mixed up messages. I guess it is a bit like one muscle attempting irish dancing without informing the rest of the body!!

  • Hi kittyfisher

    I have read your post with so much pain and sorrow for what you are having to endure, and I genuinely hope that you can find some resolution and relief to these issues. I can wholeheartedly imagine that you are feeling very scared and very vulnerable with what is happening to you, and I sincerely hope that your Neurologist can help give you the answers that you so desperately desire and deserve.

    All my hopes and dreams for you

    Ken x

  • Thank you ken. I dont be on here all that often but whenever I do you always reply and in the way you word your replied always give me the strength to carry on. I try to carry on each day with a smile on my face and always telling myself there are people out there much worse off than myself. Hard at times though when your in constant pain and sleep deprivation kicks in but no matter what I laugh each day with my two beautiful young grandchildren and I have the most fantastic mum god bless her she travels from scotland and spends weeks at a time with me which I am truly grateful for. When this happened all my medication for the fibro was stopped. I'm now only allowed as little painkillers as possible which makes it harder but now am so scared to take any tablets eg my neurologist gave me tablets last thursday and I've yet to take any.

    Thanks again ken

    kitty

  • Hi Kitty Oh dear you are having a rough ride of fibro aren't you? I read your post and I kno just how you feel. I have been fighting for years to get to see a Nurologist twice they have just said they have seen my MRI and they cannot help, well this time I have asked to be referred to see if they can steer me in the right direction. It is terrible this wading through pain and doctors some who do not even recognise Fibro.

    Hold it together Kitty and please keeo fighting hopefuly one day soon we will start winning.

    Keep smiling xGins

  • Hi Kitty.

    I was so sorry to hear you are feeling this way as I can truly sympathise. I have been this way for over 12 months now and have all but given up asking for help. I have had Fibro for 20 years now and for the main I have managed to keep it in check with being sensible, like most sufferers, so when something completely different happens we would like some kind of answer. As well as the leg and back/hip pain and the feeling that I am walking on broken egg shells, I have been having a lot of ear pain and trouble swallowing (not as in having a sore throat). When I did eventually decide to go to my doctor all I got was "Well I don't think we are looking at MS". ?? He kept saying I was just having a bad flare up and to deal with it, there is nothing wrong with my ears and the pain will go away, eventually. When I saw a different doctor they suggested an MRI but as I am claustrophobic this was ruled out so I saw the ENT dept. who asked me to make my ears pop. That was my test over. I have really now given up. When I go out I make sure I am with someone as my balance has gone But please don't you give up as it sounds that you may have someone in your corner.

    Keep on smiling Kitty.

    Big hugs

    Ruby

  • Oh kitty please dont panic, easy to say I know, but I had similar thing for 7 months had all sorts nurological tests and 3 mri scans, results degenerative hip chronic back pain and fibro. Ive worked for months on trying to get right physio and meds and managed to improve somewhat as more movement in legs, moved from wheelchair most time to two sticks if walking long distance or one stick short.....to propel me, though still walk like a pigeon. I really hope that your issues are fibro like mine, I know I went through months of psychological hell. Please try to be possitive and think of it as a bad fibro attack.and let us know how you get on. Thinking and sending healing thoughts to you Kitty. Kxx

  • Hi letmeinplease. Thank you so much for your reply. As you had the similar things as me happen to yourself I hope you dont mind if I ask you some questions. Did it happen overnight to you as it did me? Do you have the tremors? Did your symptoms get worse before you got bit better? Did you get to see a podiatrist? Did u get a lumbar puncture done? I've to go thursday morning for it and am so scared. Did you get an EEG done? Did physio help you? Do you have a lot of pain when you walk? What medication are you on now? Was it the mri scans that showed your condition? Sorry for all the questions and hope you really don't mind me asking them.

    Take care

    kitty

  • You do have a lot of questions, I recall feeling a sense of panic too and not as comprehensive in what questions to ask anyone. Happy to fully reply in more detail with a direct mail

  • I dont know much about doing direct mail. Could you fill me In please if you dont mind

  • Sorry for late response really bad day. Ment private mail, should be in your in box. To send pm go into your acct by pressing your smiley logo. Here you can look up names sent and receive private communication. I done PM as response so long and think answers nxt questions too

  • Hi sorry I'm bothering you again and please dont feel you have to answer this question as I fully understand if you dont. Its just that before this happened I was only getting low rate care dla then the day after I was discharged from hospital I got a phone call from social services dept. from the hospital. The lady told me what I should do which was to ask for a review form get it filled in asap. That was on the 25th april and I still haven't had a decision made. I've called the dla dept twice in the past 3 weeks to be told the same a decision should be made soon. Surely the medical evidence should be fine its plain for anyone to see the problems I have. I don't understand whats taking so long. Did you wait as long and did things turn out for you alright in that sense? Financially things is just awful which is an added worry I dont need. I was thinking of getting in touch with the social worker who rang me that day but I just don't know what to do for the best. As I said please don't answer if you dont want to.

    From a very grateful

    kitty

  • Hi Kitty,

    Just reading your news and every one comments, we are all in the same boat, started joining this groups over 2 months now, we are not gps, but it is really helpful to know that we are not alone, I suffer FM for over 15 years now, it is getting worse and worse, even though my health care professionals are very helpful there is nothing they can do at present a part of trying to see which treatment are suitable to control/prevent to get even worse - but it seems FM is a condition that at present still being unable to be treated yet, they are still doing the clinical trial on how to help FM sufferer better - our ''dopamin'' aren't function properly, and hopefully ''God'' choose an excellent scientist who would find that gift to cure us all, util then, we have to wait and try to space our self out, just try to accept our condition, mine getting worse now, I am glad when Ken advise me about his medication and his condition I was really terrified before I read his news, as I got black out and horandeous headache, now I can't even walk properly, my right hand does not even function normal anymore, but even though I accepted my condition, I keep doing 2 minutes exercise lifting a tin of bake beans each morning. So, Kitty, just give your best each day, you are not alone. Best of luck, I hope this words help you a bit?

  • wow I thought my fibro was bad but you sound like ur really going through it at the moment im glad to hear that you have a good doctor behind you and hope that you can find the answers you need to help you wishing you lots of luck and hope ur feeling better soon

  • Sending you hugs, reassurance and hoping things are sorted for you soon. This must be a very frightening time for you. New symptoms are often hard to differentiate with Fibro and it's difficult not to panic. This is a place where people truly understand - I hope you keep in touch and let us know how you get on.

    With very best wishes

  • Hi thank you so much for your kind reply. It sure is scary but I always try to stay positive. I have a great physiotherapist who I see every wednesday so I know on that day I have someone to talk to and ask questions. She also emails my neurologists secretary to keep him up to date with whats going on with me which always makes me feel a bit better mentally if you know what I mean. Its the not knowing that messes with the head more than anything. If I could just have an answer then I could probably cope better deal with it and try to get on as best I can.

    Thanks again

    take care

    kittu

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