bizarre and worrying symptoms ...can anyone shed light?

Hi, I am rather bothered about some strange symptoms I have been getting. I realise my health conditions make the situation more than a little complicated than most - I am hypothyroid (100 mcg levothyroxine approx12 years), coeliac (total GF diet 11 years) and significant painful migrating joint pain symptoms / dry eyes / dry mouth with a sjogren's / UCTD diagnosis for which I take plaquenil (200mcg daily). My lupus panel came back negative.

For a few months now, I have been concerned about the feeling of being pricked randomly all over like someone has stuck a pin in me. I get runs of this and when then happen they interrupt my day as I am driven crazy all day unrelentingly with feeling as though someone has stuck a needle in me ... it is a real OUCH! Sometimes I they are in my eyeball. I have even been woken up having been fast asleep. Also, sometimes I get the feeling like an electric shock going up my leg and I cant weight bear (but lots of my joints are bad). Sometimes this has woken me in the night too and my legs often feel disconnected if that makes sense?

Through the Thyroid UK site, I read that this might be attributed to vitamin B12 deficiency - my GP tested me and my results were 284 (lab ref 224 -1100) so pretty low considering I had been taking a multi vit with vitamin B12 included. The GP agreed to my taking a sublingual spray for 3 months... but the symptoms have continued to rear up again. When I went back last week she said she didn't think it was a vitamin B12 problem.

She wants me to tell my rheumy next month but I have so many joint pains... will he be interested in these symptoms? My GP says if he thinks it is not related to UCTD etc... then she wants to follow this up.

Would anyone else be concerned? It is all beginning to interfere with my life .. I cannot separate out which problem is part of which condition.

Thanks in advance.

7 Replies

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  • For one keep faith I don't know how you feel but that but as far as your Hypothyroid IDK know but I have lupus and they had to test me a couple of times to find out I had it. I'm use to the lupus because it be days cant sleep due to my legs hurting are just a joint pain. Oh believe me if you do have lupus your family will understand but you have to get much info. as possible and they will back you up! you never know when lupus will hit..But always if it turns out you have LUPUS,.......LUPUS DOES NOT CONTROL US!!!!

  • Hi Bestbuddy

    So sorry you are suffering with horrible symptoms! Luckily I haven't had similar but like you have been diagnosed with UCTD.

    It is always a good idea to tell your Rheumy any new symptoms as it helps them build a picture . He might also refer you to another specialist who could help like a neurologist who deals with nerves. If a consultant refers you it's quicker than a GP!. Good luck for when you go, hope you get help that you badly need. X

  • Hi Bestbuddy.

    Defo tell your Rheumatologist everything as the more information you can give them then the more they can help. Good luck and I hope they get you feeling better. x

  • I suffer similar problems and I know the change in weather patterns affect me, too, especially the wet/ joint pains. I, too, was diagnosed hypothyroid in 2009, but I cannot take levothyroxine as it contains lactose for one thing that I cannot take. I am also electro-sensitive to the point of Hyper-ES at times - could these affect you, too?

    I try everything when I get the pains and the 'pricks' - yesterday being particularly bad and itching, too, like stinging nettles all over my body.

    I sympathise with you, but do your best not to get overly concerned, some of us are extremely sensitive beings and I suspect you are, too.

    Sometimes, I need to exercise, other times sit and read, relax or even rest and meditate asking the pains to go or asking my body to get rid of the pain.

    Try changing activities when the symptoms come on - Of course, if you're working this is not easy and may not be possible, but perhaps something around you/at work is affecting you.

    Our bodies really are very clever and could well be trying to tell us something when they give us pain or other unpleasant symptoms.

    Other times I massage where the pain is.

    I was lucky enough to find good therapists who taught me how to do Neuro-lymphatic reflex massages. If you look on the Internet, you can probably read about them. I do these and chakra balancing exercises and meridian balancing exercises.

    I have little faith in drugs as all my problems started after being overdosed on a strong broad-spectrum antibiotic that I shouldn't have been given with my penicillin allergy for a suspected, though not identified, infection when actually I had pieces of mesh from the internal dressing pack left inside me for six weeks after the pack was removed after surgery. I almost died and on my healing pathway, I have since learnt how intelligent our bodies actually are.

  • Yes, I get those too sometimes but they go away after a day or so, only to reappear few weeks later, etc. The pin pricks are neuro in nature - the signalling pathway is being affected somehow by lupus and the brain, not recognising the message it receives, makes one up. Have you tried upping your vit D?

  • Thank you for your replies...it is really strange to have so much going on and yet they cannot define exactly what is wrong with me. Many of my symptoms definitely relate to lupus and yet they say I test negative... Saying that, I gave been on Plaquinel for 18 months and tolerate it well.

    My GP knows all of these new symptoms, and without being alarmist I mentioned MS to which she agreed ...especially the way these sharp needle / stabbing pains are so random and are even waking me up at night. She said if rheumy not satisfied its part of connective tissue problem, then she wants take it further.

    I really need to know as I am a part time teacher and I am struggling to maintain my energy and ability to do my job despite only teaching 3 days a week. It would help school to make some adjustments to my work place and for them to be more conciliatory when I need to see consultants on set days as these are the only clinics they run!

    Thanks for the explanations about lupus and the brain. I really need a break through as I feel the days in-between attacks are getting shorter.

  • Dear Bestbuddy,

    Yup, I have had these weird pains for years, many years before being diagnosed with Lupus. I find the stabbing pains in the eye the most disconcerting. I did make a vainglorious attempt to research the pains (before the internet for goodness sake) and found in America that it was a recognised neurological symptom and someone in Cambridge was setting up a research study, but that was as far as I got. I then adopted the attitude that it was something I had to live with, but even now after decades of it, it can still take me by surprise.

    Definitely tell your rheumy it might still be indicative of neurological involvement. My problem with this at the moment is large parts of my body (at random) have the sensation of prickling, like when the hairs on your arms stand up, but multiplied by a hundred, severe enough to wake me up. My GP who is lovely, has prescribed gabapentin which helps to take the edge off, and the ouch style stabbing pains are also less on this drug.

    The best of luck with your rheumy appointment, don't forget to list all your symptoms and see what happens.

    Kath

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