Hello, I’m 21 years old and currently living with a friend who has had the same ‘set’ of symptoms for two years and its getting worse. Basically she has periods of being ‘okay but in a lot of pain’ and then days/week of intense ‘symptoms’ such as no balance, unable to stand/walk unaided, blurred vision, headaches, fatigue (never feeling refreshed - constant), constipation, spasms, and “fit” type things. On a good period she still has constant pain in legs/knees/spine/neck. Always tired, curling toes, weakness, bloating, constipation, stiffness. These are just some of the symptoms. For two years i have remained by her side and been back and forth to doctors with her getting different answers from “its anxiety” to “its low vitamins, eat prunes”. Recently i went to the doctor with her and said we were fed up of being turned away etc so they sent her to a rheumatologist to ‘put our minds at rest’. The rheumatologist examined her briefly and took some blood saying “ita probably fibromyalgia” and referring to chronic pain team. Ive looked up both fibro and ms and im really not convinced that fibro is correct. For instance her symptoms have got worse over time, she has worse patches, and quite a few symptoms are more ms fitting than fibro. Im now stuck for what to do. It feels like no one is listening to us, and im just left to hold her onto a bowl to pee in when she cant hold herself up/go up to the loo and be expected to believe its fibro/anxiety/made up because of our age? Of course i dont want her to have ms, and i know fibro is also awful to deal with etc, but i just dont feel were being listened to or taken seriously. I dont know where to go from here. i feel so useless.
Is there a different GP at the practice that you can talk to?
When is the pain clinic referral? Does your friend have an appointment to go back and see the rheumy? I think the key here is to go through the fibro investigations. If the rheumy ends up not thinking it’s not fibro, presumably they will refer your friend back to the GP and your friend can request a neuro referral.
It isn’t fair for your friend to be in pain and to be struggling so much with day to day living. I think she needs to demand some answers if you don’t get anywhere with the rheumatologist.
Snap. She sounds like me. I suggest she go to A&E next time she has an episode. She’s fortunate to have a friend like you. She entitled to have medication to manage her symptoms whatever her ‘label’.I have the Fibro label, mine also seems to get new symptoms, I’m on the wait list for the wait list for the Neurologist. She could have anything. Keep being her voice .
Thank you for the replies. We have seen a few gp’s at the practice, think were going to move her gp’s. We have ni idea yet when the pain clinic is and do not know if she is seeing the rheumy again. Seriously considering going down to a and e next time its so bad. Xx