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[MAT48]

I've been struggling with peripheral neuropathy for 5 weeks - pins and needles constantly in my feet and hands and elbows and numb calves plus. Been told it's not diabetes, it's not my thyroid (I'm hypothyroid), it's not B12 deficiency (although for me the jury's out on this one) and not my RA because I currently have no pain and no swollen joints. They (GPs) think it's the Methotrexate I've been taking for my Rheumatoid Arthritis for 20 months. My rheumatologist isn't convinced and nor am I but I've been taken off the drug for 3 weeks now and told I can't take it again until this resolves.

But it appears not to be resolving and I'm finding I'm waking every night at around 3am and not getting back to sleep - hands and feet are burning and fizzing and it actually wakes me and is quite sore (though nothing on RA pain of course!). I am wondering if anyone here has this constant fizzing and deep heat in their peripheral parts with their meno? I'm post meno by a few years but I know that this doesn't mean anything. Never had hot flushes or night sweats so no point of comparison but it doesn't come and go as my friends hot flushes do - it is with me always now. Any ideas?  Mat x

[Smokey]

Hi Mat48

Are you having any more tests, or have they just left you waiting in limbo?

There are lots of weired sensations with meno at the moment my legs feel stiff and I have had tightenings around my head and very dry eyes.
And I'm on HRT !

Hope  you get your problem sorted out soon,  if the pain is bad ring the doc again and demand some pain relief, even if temporary.

[MAT48]

Thanks for replying Smokey. Yes I'm in a kind of limbo. So far I've been to Sjogrens (didn't think so - eyes not quite gritty or dry enough), Pernicous Anaemia (none of medics think so but the people with PA think its very possibly B12 deficiency), Vasculitis UK (helpline chap came up with GPA/ Wegners G... as a possibile misdiagnosis of RA). But me - I just don't know. I'm just waiting for all the burning and tingling to join forces with the aches and stiffness and turn into a huge flare up now! I wish they could test further but GPs are convinced that it must be a very rare side effect of methotrexate - and to be fair I've had a few - its not a nice drug at all. 

On the plus side apparently my central nervous system isn't affected!   

Ps pain killers don't do much for an RA flare sadly which leaves high dose steroids - Yiuk! Wish they had let me have HRT now so I could have maybe ruled meno out.

Pps - dry eyes you should check out Sjogrens Syndrome

[Sarai]

I have Sjodrens with a positive blood test but I don't really have dry mouth or eyes, so don't let that convince you you don't have it.
You have one autoimmune disorder so are likely to have more as they like to travel in groups.
Check out Hughes Syndrome Foundation, we have a support group on health unlocked.
I know you say it's not thyroid and will know loads about it, but have the docs checked for thyroid antibodies, and T3 and T4 ( I think). Check out Thyroid UK
I Hughes Syndrome or APS which can cause PN. I do get burning feet, sometimes on the tops of my feet, for no reason. And very painful fingers but after a lifetime of ill health I tended to think its just tough as I am on warfarin and failed on plaquenil only steroids left.

[MAT48]

Well I spoke to a woman on the helpline of the Sjogren's Society and she said that most people of average menopausal age get dryer eyes but thought it would only be mild if it was secondary. My rheumatologist must be thinking along these lines because he asked my GP to recheck my ANA and my Rheumatoid Factor (was positive a few years ago). I will look up Hugh's too. But this Sjogren's woman was on quite a high dose of Methotrexate for her Sjogrens - I wonder if you can take it with Wafarin?

I do use Thyroid UK's HU quite often but find it terribly confusing. My GPs refuse to test my T3 despite my repeat requests. They say it's only necessary if my TSH goes outwith normal range and presently it's bang on fine. But the thyroid UK HU people all told me that I need my Levothyroxine raised. My GP is adamant that this might tip me in the other direction of Hyperthyroid as it's all about the balance he says. I'm getting terribly cynical about it all though and don't blame you for not wanting to go down the drug route with your Sjogrens. My cousin has primary Sjogrens too and it is usually much more serious than secondary but she, like you, didn't want the treatments they tried to push her onto. I don't think her eyes are much dryer than mine actually - I do have to use drops most days just now.

I think I might have cracked what is going on with me tonight actually. Someone posted on the NRAS HeathUnlocked about their Restless Leg Syndrome and I followed it up because a friend who has it suggested I might be suffering from this re the PN. I looked it up and yes it may well explain everything with me and I hadn't taken it seriously before because I assumed it only applied to legs - but it can affect arms and hands too. I'm awake most nights now with this raging sherbet fever and I find I can't stay still with it at all. I've been given Zopiclone to tackle the insomnia and Amitriptyline to tackle the neuropathy and am wondering at what point my life might get back to normal? No point soon it seems - especially if the RA comes raging back! I feel I may have had a very easy menopause but the autoimmunity it has triggered has meant that I actually envy my friends for their more normal ones now. Mat x