should I have to live with waking up with this every day

should I have to live with waking up with  this every day

dr s tomorrow for scan results which I already know .other things to bring to her attention.nasal sores returned with more swelling .more sore bone growth .now can barely walk or get dressed (bending )cos of pelvic pain,cysts(?)on backs of knees(achy) and swelling from knees to feet.cannot hold anything in hands (not just CTS)whole hand-palms and fingers very sore and swollen .

14 Replies

  • So sorry to hear you are feeling so unwell, aside from medication may I suggest you ask about mindfulness meditation, whilst I realise that we are all different I have benefitted from this, in fact I have had a course of CBT which helped me come to terms with all this, when this was suggested to me my immediate thought was ,oh, now they think I've lost the plot, however that was not the case. As a result of all this help I am coping much better than before. I wish I could be of more help to you it is awful to constantly feel you are being fobbed off when you feel ill , whatever the cause of your pain may be it is real and must be addressed. I hope you get answers soon. X Lou

  • I was referred to ENT 2 years+ ago after having the same nasal sores and bone growth and treatment not curing the sores only temporary relief.saw ENT whose final letter to my gp said

    "ITS NOT SINUSES" when I had never had a sinus problem not had my gp ever mentioned sinuses.requested re referral to ent but gp blatantly refused.still trying to get referral .hopefully tomorrow I will.i thought it was lupus -from symptoms and past history btu have been told of something called orofacial granulomatosis.???

  • Hi anbuma

    I am so sorry to read that you are suffering in so much pain, and I genuinely hope that your scan results are good for you? I hope that you can explain all about your other symptoms to your GP also.

    All my hopes and dreams for you

    Ken x

  • hi Ken

    thank you am going armed with everything written down.the pain I can more or less cope with.its my appearance that concerns me .so self conscious of huge swollen nose and swollen lip

  • Anbuma do you have a pic you could post from a year or so back to compare size of swelling on your nose and bottom lip? Maybe you could then show it to your doctor so he can see the changes. X

  • Hi there.have shown my gp a pic from several years ago and lip was swollen then btu not as much but nose has only been since mid/end 2011-not sure if i have a pic from around that time .will see if I can find one.

  • My endo asked me if my nose had enlarged -it hadn't-as its a sign of acromegaly, whatever that is.It was when I told him my hands had grown! X

  • hi P1pp1ns

    I am sure my hands and feet have grown too-more wider than longer-fingers longer and swollen,bone growth on feet at base of small toe.take a size larger shoe size now.

    took dog s out but me and my oldest dog very slow .couldn't climb over a low fence -cos of cysts on knees -had to physically hold onto a tree and lift my legs over with other arm.

  • will post before(only one I could find to show gp-from before 2004) and now pics plus symtpoms of acromelagy.

  • Anbuma, could it be a food allergy? Have the done an allergy patch test it could be something as simple as that! Hope this helps! Take Care xx

  • hi honor have done all that allergy testing -cut out wheat etc no difference.

  • Hope the doctors can help you darling!!! xxx Mitzi

  • I feel your pain I wish they become more aggressive in diagnosing and treatment for you, you look so different now than before can't they see that something is wrong? Don't give up hang in there xxxx

  • Please try a cinnamon and benzoate free diet for a month or two and see if it improves if its orofacial granulomatosis on your lip (google the diet). I have this - it didn't work for me but is supposed to work about 60% of the time. Good luck

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