Help!in need of some advice please. - Fibromyalgia Acti...

Fibromyalgia Action UK

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Help!in need of some advice please.

20 Replies

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

20 Replies
Keeleybee profile image
Keeleybee

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

in reply to Keeleybee

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

Keeleybee profile image
Keeleybee in reply to

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

in reply to Keeleybee

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

Theoruby8911 profile image
Theoruby8911 in reply to

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 ?

in reply to Theoruby8911

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

Theoruby8911 profile image
Theoruby8911 in reply to

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

in reply to Theoruby8911

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.

Regnofibro1 profile image
Regnofibro1

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!

in reply to Regnofibro1

Thankyou

TheAuthor profile image
TheAuthor

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

Ken

in reply to TheAuthor

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

TheAuthor profile image
TheAuthor in reply to

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

Ken

dillydally1 profile image
dillydally1

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

in reply to dillydally1

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

Notifewithfibro profile image
Notifewithfibro in reply to

Pain clinic isn't any fun though either. They are just putting a patch on what ever it is. Been on pain meds for ten years don't remember anything about my kids growing up. It socks. They are teens now and always ask what was I like when I was little. Did I do anything funny. How do I tell them I can't remember. :(

KLR22 profile image
KLR22

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.

Karen

in reply to KLR22

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.

Notifewithfibro profile image
Notifewithfibro

I hear you. I have exactly the same thing. Neurologist are a joke. They love labeling people with Fibromyalgia. Too much work to actually think of anything else yhat they learned in school. Went to Mayo clinic in Rochester because I lost all functions of my right side. Said I h a d Fibromyalgia. But then I compare with other people that have Fibromyalgia. They have never heard of this system. I wish they would rank Fibromyalgia at different levels like they do with cancer. Trying to get disability but get refused because other people with Fibromyalgia hold down jobs. Not me. I can barely take care of my family. If they ranked us as different stages. Because there are some people that have it and only have flares. I wish I only had flares. Mine is 24/7 no break. And yes they think it is all in my head. Say I am sorry you are in so much pain. I didn't pay a doctor to feel sorry for me. I payed a doctor to help me. If they can't help me then I shouldn't have to pay them. If I hire a service to mow my lawn they can't not mow my lawn or say it is all in my head that I think my lawn needs mowed but still get a payed. They would loose their business because no one would hire them. We're is the quality of service when you go to a doctor. I wish days that I just had cancer instead. Cancer takes either 1 to 2 years of your life away but then it is back to normal. Or you die with dignity. If I committed suicide due to all my pain. There is no dignity. And why isn't there more studies down for Fibromyalgia. Life is a joke. Good luck I know what you ate going through. It is so dam frustrating.

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