Help!in need of some advice please.

Hi,my name is sarah,i have chronic severe back pain,widespread pain from neck to toes,restless legs constantly at night,extreme fatigue,loss of hair,taste and smell,pins and needles up back and head,my feet sweep get hot and very painful,numbness in legs and bottom,in pain all day everyday,the doctor haven't diagnosed yet,saw a neurologist he said that it's all in my head and that my brain is playing up,im not happy and I have 6 children to care for and social services are doing a child in need meeting every six weeks,i would be greatful for some advice please,thankyou for reading

18 Replies

  • Hi, have the doctors put you on any pain medication yet? I bet your really struggling and stressed. I hope your ok x

  • Hi,2x pregabalin(lyrica),tried gabapentin and amitryptilin,i am more worried and I have to push myself through pain to look after the children,thankyou for replying

  • I completely understand that I only have one child and that's hard enough lol is there anyone else that helps you? Chronic pain regardless of the cause is hard on its own and a struggle. I would suggest a stronge pain med as well as the medication you are on , it does help take the edge off :-(

    I do hope you find help. Ask the doctor to refer you

    x x

  • I am in a battle at the moment,the dr is saying either fibro or ms,and the neuro said it's all in my head that my brain is Playing up! I have to go back in a week to get stronger,i have a husband and he has osteoarthritis,thanks again x

  • hi Sarah , have fibromyalgia , I was told that fibro is a new word for ME , MS is Different to ME and your problems sound like ME to me ,Are you any further forward with the doctors x ?

  • Hi,i recently changed doctors and have had lots of appointments,i have a brain scan after xmas,i have an ent appointment. Coming up as I have reduced hearing,i have an appointment next week for the bladder and bowel clinic for incontinence,i recently had ct scan as they found a smear on my lung waiting for the results and now I have to wear glasses because my vision is blurry, my gp has upped my medication but she's waiting for the brain scan results, thankyou so much for your reply, it's a slow progress with getting a diagnoses x

  • Sure is slow !!! Keep your chin up though at least it sounds like they are doing a thorough investigation that is brilliant xx julie

  • Hi hope all is well with you, I just been diagnosed with emphysema and they put me on new inhaler fostair,i have also been referred to eurologist for urine retention now waiting for hearing appointment it's all worrying but when I come on this forum there's others like me and it kinda helps to make me think positive and know there's hope.

  • I take lyrica 300 mg 2daily Cymbalta and soma it helps with pain. Also ask for 2nd opinion from different neurologist! I agree about finding help with kids. You might try wearing a brace it seems to help a little. At night you might try heat or ice on your hips. Where siatic nerve is. I truly hope you find help soon!

  • Thankyou

  • I am so genuinely sorry to read of your situation, and I sincerely hope that you can find some resolution and relief to these issues. It may be beneficial to discuss how you are feeling about everything with your GP as they may be able to refer you to a different Neurologist and to a Pain Management Clinic. I want to sincerely wish you all the best of luck.

    All my hopes and dreams for you


  • Thankyou so much for replying,the neurologist I thought didn't seem interested,though he did want me to have a brain scan and upper back mri,I have been to pain management and was given simple exercises the next day I couldn't move it was agonising

  • I am so genuinely sorry to read that this did not work for you, and I sincerely hope that you can find the answers that you desperately desire and deserve.

    All my hopes and dreams for you


  • gosh I ate it when doctors say it' all in your head and your brains playing up. what does he mean by that. I too agree you should be referred to pain clinic. also how about seeing rheumatologist for a diagnosis. you certainly need help. very proud of you managing with 6 children. it must be so difficult. big hug on it's way to you xx

  • Thankyou so much,thankfully I have my son helping :-)

  • Has your doctor checked you for anaemia, B12 deficiency, thyroid antibodies and/or Hypothyroidism - some of your symptoms could be due to any of these conditions so it may be worth getting them checked out.


  • Hi,yes recently had those blood tests and they came back normal,thankyou for your reply

  • I recently had a chest x ray,when I got home the gp called to say they have found a 2cm lesion on my right lung,she booked me in for ct and to see lung doctor,im worried but trying to be positive is any one else been in this situation any advice will be appreciated.

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