Is it or isn't it?

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Is it or isn't it?

Postby nad1611 » Sat Feb 16, 2013 1:23 pm

Hello everyone. I’m hoping for some answers to what is becoming a bit of a is it or isn’t it situation. I have suffered from RA and Fibro for about 16years. In the past years or so maybe a bit longer I have had increasingly distressing symptoms, which were initially diagnosed by my GP as Raynauds. When I saw my Consultant she said it was part of my Fibro.

Up until then I hadn’t really seen my toes and lower legs when I was having these symptoms because I literally have to have them covered up for most of the day and night.

My symptom are burning tingling extremme cold in my feet and lower legs. It feels just like when you hold snow as a child, so very very cold but shortly after it becomes a horrible burning and painful tingling, which usually goes on for hours, it has had a terrible effect on my llife and is very distressing. I was started on Nifedipine 30mg by my GP which was suggested I stop by the Consultant as it wasn’t working. However I asked my GP, if there was really nothing else that could be done and he said we could increase the Nifedipine and I felt it was worth trying anything. So I started on 60mg, after a few days I have noticed an improvement it’s not great but is noticeable. Yesterday I was in my dressing gown and as I came out of the bath the phone rang and my legs were exposed for a lot longer than normal, they suddenely became very tingly and burning and cold. I looked down and saw that my feet,shins and knees were a mixture of bright red,blue and white. It was a bit like a dappled effect, where areas were diffferent colours.

I suppose my question is does anyone know if this sounds llike Raynauds or Fibro. I realise that this is not a Raynauds Forum but as many of the conditions overlap there might be someone who can help. Surely if it’s Fibro the Nifedipine wouldn’t have had any effect? Would you expect the colour changes if it was Fibro? I took photos of my legs to show my doctors to see if that would help the diagnosis. Any help would be very much appreciated.Thanks.
Last edited by FluppyPuffy on Sat Feb 16, 2013 2:22 pm, edited 1 time in total.
Reason: Split into smaller paragraphs for easier reading.
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Re: Is it or isn't it?

Postby masonsbarms » Sat Feb 16, 2013 4:55 pm

hi, i have recently been diagnosed with raynards after suffering for a long time as i just put it down to fm

i have it in my feet, they feel cold go red then purpul and have even started to turn black,

i get chill blanes on my toes, they itch a nd the pain is awful and when i have a bath in the hot water,

i take nifedapine and they help me with the symptoms i do have to increase them when the weather is realy cold.

hope they start to improve soon.

take care xx
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Re: Is it or isn't it?

Postby FluppyPuffy » Sat Feb 16, 2013 6:59 pm

:wave: :wave: and :welcome: to the forum nad :-D :-D

I moved you into hear as it's a more suitable part of the boards for what you are asking about.

I quite often experience what you have described happened with your legs, esp when I get out of the bath, along with other Raynauds~esque problems, esp with my feet. I've just not been brave enough to talk to my GP about it yet :oops: :oops: :oops:

WRT to the Nifedipine not seeming to work at first, but the increased dosage now showing some improvement in things, it could be that the most suitable dosage for you hasn't been reached yet, and a bit more twiddling and tweaking with it could make things a little better still for you :fingerscrossed: :fingerscrossed:

Taking the photos of how your legs were was a good idea, no matter how well we describe something, being able to see things as well usually helps even more.

Sorry I've not really been much help, I wish we could say what it is or what it isn't for you, for that you really need to see your GP to start things off to get you a definite answer/confirmation of dx.
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Re: Is it or isn't it?

Postby Jules Robin » Mon Feb 18, 2013 11:42 am

Hi Nad, just spotted your note to forum whilst browsing. I too have horrid burning, tingling,freezing feet and lower legs. Has been with me a while now, gradually worsening over past year or so. I was diagnosed with Reynauds prior to the legs and feet worsening;went because my hands were so painful and kept getting blood vessels breaking in my fingers ,awful pain as they break and bruise. I recall my mother had the same trouble with her blood vessels and very painful feet. I think that folks with fibro are predisposed to numerous health probs and Reynauds is one of them. Not much comfort I know, but I have started putting on Biofreeze gel when my feet and legs are at their worse ; usually night and on waking. Its a bit smelly but freezes the area and eases the pain.I heard about the gel on this forum and it definitely takes the edge off the pain for me along with co-codamol.Exposure to the cold does effect me too, but when feet are burning I'd love to be able to plunge them in a bucket of ice!!! By the way, once the Biogel is on at night I put socks on as they help to stop it getting the bedding messed up as well as keeping feet cosy!
Just one more thing, when I was at my hydrotherapy session, the physio said she was surprised that doc had not referred me to a neurologist for a nerve test on my feet and legs as pain is so severe and limits my mobility such a lot. I'm going to look into it. I wonder if other fibro folk have had this procedure done? Trust your pain is bearable today, take care and gentle hugs, Jules (Robin)
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