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The UKFibromyalgia Forums • View topic - Need help please
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Need help please

PostPosted: Sun Jun 16, 2013 7:38 pm
by Henri
called neuro today, to be told my symptoms are not neurologic, and he has discharged me. I now don't know what to do at the moment ,I can go 6/8days being able to walk, I'll go to bed one night get shorting pains down legs and across my back , then not be able to walk the following day as my knees are bent legs are weak, heavy, and all I can do is a shuffle if I'm lucky. cant lift legs have to help then.this goes on for 3/4 days they then start to get stronger again to the stage I limp, I then start the cycle again.

This has been happening on and off the last three months. Had mris on neck back and head all clear lp clear too. I also get stone cold feet or burning sensation in feet, restless legs at night time, fatigue and not being able to sleep. I've had bladder problems, burning in arm pit, pins and needles in feet and hands, dizziness, legs give way. Forgetfulness. I've even been filling kettle and put other hand without kettle in under tap.

I feel down as it feels like he is saying there is nothing wrong. Gp has referred me for physio and walking aids assessment she has also taken 6tubes of blood today to be tested. I have brisk reflexes can't stand on tip toes and also when my legs don't work they are no longer ticklish nor are my feet.

Where do I turn now as I'm feeling depressed started to struggle money wise as I've been signed off work, due to the walking problems, and general feel lost. Thanks

Re: Need help please

PostPosted: Sun Jun 16, 2013 8:50 pm
by shazq
:welcome: to the forum Henri :cow-wave:

Does your gp suspect fibro? you should ask if they will refer you to see a Rheumy, they are the ones who would normally dx fibro if your gp has not already dx you.

Fibro will not show up in any tests so maybe thats why they are doing bloods to rule out other things first.

The first thing is getting your pain under under control, here is a link of some meds used to treat fibro, if you print it off you could go through it with your gp.
http://www.nhs.uk/Conditions/Fibromyalg ... tment.aspx

In the mean time hot water bottles can help with pain and wheat bags, plus Tens machine.

We have lots of info and support on the forum so any question just ask. :cow-wave:

Re: Need help please

PostPosted: Sun Jun 16, 2013 9:20 pm
by FluppyPuffy
:welcome: to the forum Henri :cow-wave: :cow-wave:

I'm sorry to hear how things are for you and what you have been dealing with. There is lots of info and advice on here, as well as support and understanding, so hopefully some of it may be helpful in some way to you.

With you finding your way to us, might I be right in thinking that you may be wondering if FM might be the reason behind the things you are experiencing??? If so, then having a look round the forum and the main site might be somewhere to start. There are numerous things that can be associated with FM, and quite often it's not until someone starts looking into things further do they realise that they could have other factors that might indicate the condition could be what is affecting them.

With you saying things are becoming difficult financially, you may want to consider looking into if there are any benefits/help that you could be eligible to claim. There are groups and organisations that can help you with this as well as guiding you thru the process. Have a look and see who is in your area, or contact your local council as they usually have this info.

Not sure what else I can suggest at the moment :-? :-? :-? Anything that you want to know about, just ask and we'll try to help you with it :cow-wave: :cow-wave: :cow-wave:

Re: Need help please

PostPosted: Sun Jun 16, 2013 10:47 pm
by Henri
Thanks both you have been great, nobody has mentioned anything expect its not ms, I'm gett frustrated cos that don't help finding out what it is. I'm going to go to doctor with facts and ask to see remy person x :-D

Re: Need help please

PostPosted: Mon Jun 17, 2013 12:56 am
by denys
Hi Henri and :welcome: to the forum :cow-wave: :cow-wave: :cow-wave: :cow-wave: :cow-wave: :cow-wave:

Re: Need help please

PostPosted: Mon Jun 17, 2013 9:17 am
by masonsbarms
hi, sorry to hear how thing are but it can take a long time to get a diagnosis, but dont give up write a list of you symotoms and how they affect you as we forget some thigs when we see a dr,

many of us have a couple of years or more before we got a answer i had a good gp but even though he belived my symptoms he didnt send me to see a rumy untill i told him i dont think i have a life thretanig illness but i know i am not right and i had alsorts of tests .

you need to keep going until you get the answers but even if the rumy gives you a diagnosis he will send you back to your gp for you needs as this seems the norm so make sure you have a gp who understands fm.

take care xx

Re: Need help please

PostPosted: Mon Jun 17, 2013 2:04 pm
by Henri
Just wanted to ask do my symptoms sound like fm or am I barking at wrong tree, I'm just so frustrated, been off work 10 weeks now and no sign of being well Enough to return x :yikes:

Re: Need help please

PostPosted: Mon Jun 17, 2013 3:10 pm
by FluppyPuffy
Whilst what you have described could be related to FM Henri, it could also be attributed to several other conditions that share the same sort of symptoms and problems. Hopefully when those latest blood test results are back, you will have a clearer idea about things. If they come back as within expected ranges/normal, then whilst it will probably rule out most of the other possibilities, it could still be FM that is making you feel as you do because at the moment there is no test that can detect FM.

If you think it may be FM, bring the possibility up with your GP. If you get some info from a reputable source, such as this linky http://www.nhs.uk/Conditions/Fibromyalg ... ction.aspx Go thru the various symptoms it lists and highlight the ones you experience. Also have a look on here as there are many possible symptoms and associated problems that you could experience, but have thought just random. Also try keeping a diary of how things are for you each day, all to help with creating that overview that could possibly help with you finding out what is wrong.

Once you've got this together, go and see your GP and see what they have to say about it being a possible dx.

Re: Need help please

PostPosted: Fri Jul 05, 2013 10:06 am
by Henri
Just a quick update,

Had blood results and I have vit d deficiency and low iron count. Also been private to a different neuro who has referred me to a rheumy. Feeling a little more positive now hoping we are getting somewhere.

Xx