My husband Lea is a sufferer of fibro, it started at the age of 17 when he had very bad chest pains and the docs thought it was a heart attack, he then found lumps in his chest they were removed and was told at that time that it was breast tissue.
Over the last 25 years he has gradually got worse with the pains that he suffers from, it all came to a head when i walked in from work one night with him in the bathroom banging his head on the walls saying that he couldn't go on with the pain in his head, so I took him to the docs who gave him morphine injection and it knocked him out for 24 hours. From that day to this life changed dramatically, he was a very fit person doing sport 3-4 times a week to within 12 months not being able to anything after a lot of fighting we managed to get him a referral to see a neurologist at the Walton centre in Liverpool, as there is a history of facioscapulohumeral muscular dystrophy in his family, he then spent 7 years of going through tests culminating in a muscle biopsy that showed changes in the muscles but was unable to confirm weather it was or wasn’t .
By now lea was under a rheumatologist who eventually diagnosed the fibro she then sent him on a pain management programme which included swimming, lea also has a skin condition called ictheosis, which when you come into contact with water weather it has chlorine in it or not makes you very itchy, when lea told them he couldn't do the swimming he was treated like a child and told he would go in the pool and they would tell him if he was ok to do it or not, along with counselling which lea is not into and on top of travelling on a round trip of 60 miles per day when you don't feel good and you are in pain and can't get out of bed is not the best course of action to take.
Lea has since been given all different types of medication to try to ease the pain he feels each and every day, to no avail, as he has developed a condition called chemical sensitivity, where a reaction occurs and causes problems with water works, rash etc. The pregabalin and gabapentin meds that are used to treat fibro make him feel spaced out and causes him to feel extreme anger and depression.
Lea has lost all faith in all doctors from our own GP right up to specialists and consultants. He was referred to one so called consultant who did not even examine him because once he found out that Lea didn’t work just offered him a place at a job club that he ran in the local area. For many years afterwards he didn’t even see a GP never mind a specialist. Lea started getting pains and a tightening feeling round his head and decided it was time to see our GP again who said that there was nothing he could do as it was just the fibro, we demanded to see a rheumatologist , the appointment was cancelled 3 times and 6 months later we got to see her, she was arrogant and nasty. That rheumatologist barely listened to what lea had to say, i tried to add to what lea was saying and was completely dismissed she didn’t want to hear what I had to say, she examined lea and agreed the yes he does have fibro but because he has problems with medication there is nothing she can do for him and discharged him. We have a really close friend who also has fibro and is a member on here, she lives down in Essex and has a completely different experience with GP’s and specialists, they are more than happy to help her in any way they can.
We have had our bathroom converted to a wet room as lea couldn’t get in and out of the bath without help and felt as though he had lost his dignity, even though we now have the shower Lea finds that his arms cramp as he is using the soap, so will very soon need help with showering.
Lea now again refuses ever to voluntary see a doctor again, they recently stopped the one medication he was on, sleeping tabs which he took 2 maybe 3 a week because of fears of addiction he’s now severely depressed and even suicidal at times and now fears that he will soon be expected to return to work with the new things coming in next year