My husband has fibro

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

11 Replies

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  • Firstly hiya. Your post is awful I cannot beleive that any medical professionals could be so awful and so unsupportive. Have you tried changing drs the reason I mention this is because both myslef and friend have fibro but go to diferent drs and my experiences have been a lot more positive than hers. She is now in the process of changing drs. I hope you and your husband get things sorted out soon. There are not many people that understand what it is like because we look ok on the outside they have no idea what you are feeling on the inside.

    Your husband is so lucky to have you who is understanding and supporting hiim.

    Take care xx

  • Unfortunately ( I have had fibro for over 20 years ) and once I moved away from the area with my great gp who diagnosed me I had exactly the same kind of treatment from pain clinics 2 rheumatologits and a couple of drs . My latest gp who started out the same way... Upset me so much I found my way here in tears... The advice I got from here was write your gp a letter explaining how you feel and how you feel you are being treated. Since then my gp has been fantastic I was referred to 3rd rheumatologist who has helped me with orthotics and aids for the house I also am treated at the pain clinic now after being referred to another consultant there who did listen to me and I have 3 monthly injection in my neck and shoulders. I would suggest you write to your gp on your Husbands behalf if he doesnt feel he can ... If that gets you no where can you change gps.... There is help out there but you have to be firm... This forum gave me that strength and it has worked

    Good luck

    VGx

  • Hello

    I am so so sorry to hear about Lea. Some doctors and consultants are so rude and uncaring. Can you change doctors or ask to see a different consultant? There is lots of information on the website you can have a look at.

    fibroaction.org/

    If he is depressed and is having suicidle thoughts he MUST see someone as soon as possible.

    Does he take any kind of pain relief? If the morphin helped, he could be prescribed patches if his pain levels are that bad.

    You must try and pursuade him to see someone or even talk to someone. There is lots of help out there. Show him this forum, we are all suffering too but are here to help each other out and we are great listeners ;-)

    Keep in touch.

    Piggie hugs xxxxxx

  • Les, I am so sorry to hear about your hubby Lea, you must be very worried about him. As Piggie says so rightly above, Lea really needs to see someone asap to talk through how he feels, perhaps an independent person.

    Seeking another opinion would be a good step forward as clearly you aren't getting a satisfactory level of understanding from the doctors and consultants you are seeing so far. Perhaps requesting another referral from your GP might be a good idea for your hubby, a consultant who would be willing to take on your hubby from a new patient point of view. This is the process when changing consultants. You would need to be "released" from your current consultant first.

    You mention that your hubby feels suicidal at times, he has far too much on his plate with the worry about all the changes to benefits etc. Have you considered him talking to a counsellor to off load all his worries and stresses, it might be worth thinking about?! Talking to the Samaritans is another possibility, but you might not think this appropriate and this might add to his worry, that is entirely up to you of course. I am just trying to suggest options for you to consider.

    Perhaps hubby needs a change in his antidepressants. Perhaps another type or a change to his current dose maybe. A review of meds from time to time is a good idea anyway as we can all become reliant on the tablets we take every day. This would be worth discussing with your GP.

    Please know that we are here for you Les and also for Lea. I hope you do take him to see someone for him to talk about his troubles and worries etc. I am sure once he has off loaded he will feel a bit better about things, knowing he has your support too.

    Please let us know how you both get on, we do care about you and will do all we can to support you through this. Take care, here's a hug for you both (((hug))) xx

  • I just want to cry when I read this. Unfortunately, far too many people who work in the health sector with a prejudice against fibromyalgia. Hopefully this will change. It is quite bad enough to have to carry this disease. However much he is lucky to have you. Hopefully he finds a doctor who attends him as he needs.

  • This must surely be also having a massive effect on you...maybe a trip and chat with the docs yourself and maybe ask for them to re test for the muscle condition again...tell the docs you have rea concern re your hubbie harming himself...if the doc doesn't want to help then go direct to the practice manager or the PCT for advice..I would like to wish you all the best as I can see that you are a very worried partner and just want the best for hubby...hoping your doc will see the same thing.

  • Thanks for the replies. Lea is a member on the site and has seen all your comments and I think he may have posted comments on other blogs, he does not particularly like talking about his fibro and the experience he has had with docs as he gets very angry about it.

    We have already been kicked out of one surgery due to arguments over the fibro; Lea liked the idea of writing a letter to the GP and will put a letter together and send it to the head of the surgery. If we where to join the surgery that my mother-in-law uses is so over subscribed that for an appointment you have to wait over a week from the day of the phone call.

    Because of the chemical sensitivity Lea can’t take any pain medication, the only thing that he has found that helps and he has no reaction to is anadin extra, he has tried all forms of the morphine from oramorph to the patches (don’t stay on because of his skin condition) he was then put onto diazepam which did help a little but then was taken off it as that has addictive properties all these meds were given to him about 15-20 years ago and its unlikely he would be able to tolerate any of them now due to the chemical sensitivty.

    Due to a poor sleep pattern he had sleeping tabs these helped because after a good night’s sleep the pain felt less and now in the GP’s wisdom won’t prescribe them anymore because of possible addiction, he took maybe 2 or 3 a week to get some relief, he fought him on this once about 8 months ago and after a lot of argument doc agreed to continue to prescribe them but has now sent a letter stopping them again so Lea has given up as he has lost the will to fight them.

    Lea has asked to be referred to a specialist outside of our area and again the GP refuses to do this as far as we are aware of because of funding. I went to college and studied and qualified in aromatherapy massage and Indian head massage to see if it would provide Lea with any relief, it does help in a small way, but due to the oils (chemical sensitivity) giving him violent headaches I have to use his oil that he has for his skin condition.

  • Such a sad story,we are all going through a hard time in one way or another,it's wonderful you are there for him,it sounds like you are his rock,don't forget yourself in all this,you need support yourself,it a bad state of affairs that the people you turn to for medical support just arnt there for you,I can imagine you are both banging your heads against the walls in frustration,you realy need to look at finding a new support network by changing your doctor and going from there,its a good positive thing you have done by joining this support network as just by asking questions and finding out what people are doing for them selfs and how they are finding the help they need may point you in the right direction,as for the suicide thoughts..well most of us have been there,this time last week I could have quite happily dissapeared of the face of the earth!i wish you both all the best,please keep in touch with us,and tell him its ok for him to talk to us,there are men here too ..xx

  • It does have an effect on me, i have had bad depression and mental health problems myself over the last 15 years or so and had counselling myself etc, Lea has also had counselling and was told by his counsellor that he was his own best counsellor and discharged him after 5 or 6 sessions. Mumof5 i had not really thought about going to see the doc on my own about Lea but it is a good idea and i will make an appointment to go and voice my concerns

  • Hi guys just a quick update rang gp surgery this week to try and get an appointment for me to see him about Lea, to no avail, i was quoted under data production and for confidentiality reasons. I have since been on the the internet and found the GMC confidentiality guidelines, according to these guidelines (57-66) as a partner, carer or friend you are entitled to go and see the GP. I have printed a copy of these out and both Lea and I have put separate letters together, these are going into the surgery on monday. I will post a further update next week

  • Hi i felt so angry for you reading your post,my husband has fibro/and lupus they have been very good ,once we got the right consultant,i see this post is two years old how is your husband now,how do you cope with the all the depression,anger ect as i am looking after him but some times find it very hard regards lou

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