I hate fibro

[Jamrichmond]

I am a 36 year old man I got diagnosed with fibro abt 3 years ago it has changed my life big style .l have cerebral palsy down the left hand side. I have had cerebral palsy all my life but that didnt stop me being successful in my life but this fibro has floored me. Before I was a sales rep on good money company car had a bought house ..l played cp football for scotland for 4 years got picked for gb cerebral palsy football team at london 2012 Paralympics scored the first goal against usa in front of. 18000 fans .even tho I have cerebral palsy I have always felt strong not now 5 years from representing my country at the sport I love I feel so weak and tired I have lost my job my house. Im on esa and feel so embarrassed I hide from people now especially when it is people who I havent seen for a while and they ask me what im doing now and I have to tell them am not fit enough to work now it just so hard when your in pain all the time I dont look forward too anything nowadays when people used to be so proud of me now they just feel sorry for me I don't want their pity just understanding I used to love my life now everyday is a chore I wish I could just wake up pain free

[Admin_AFMCG Partner]

Hi Jamrichmond,

Firstly welcome to the AFMCG community forum I am so sorry that you are clearly distressed by the situation you find yourself in, not that it helps any really but I think we have all felt the desperation you are feeling and therefore we do understand.

It sounds like despite Cerebal Palsy you had a very active and fulfilling life with many successes you should be rightly proud of as a paralympian, it is good to vent as this can be therapeutic in some ways. I wanted to say that with the right help, support, healthcare and combination of medications, therapies and coping mechanisms there is nothing to say you may play the sport you love again in the future (maybe just not quite so actively)

I would suggest you talk to your healthcare provider and also if you haven't had one, ask for a blood test. Low Vitamin D or B12 can impact on the severity of symptoms among other things. You may also like to look at complementary therapies and gentle exercise once your pain is under control and pacing techniques for the fatigue until your exercise tolerance increases. However, please not graded exercise therapy seems to have some success with Fibro but people with ME have reported that it can make the condition worse. Please take this contraindication into account and speak with GP for advice before embarking on a GET program.

This all may a starting point towards improving your symptoms and I truly hope that in time they will improve so you can feel more positive and feel happier in general. But for now please know we understand, we are here to listen and will try to reply with suggestions to help if we possibly can.

Please don't be embarrassed about needing benefits there are many stories of people who need to use them as a crutch in desperate times. Plus don't forget that everyone puts on a certain persona online on social media that their life is wonderful and free of troubles when this is a false perception -as they won't put on all the negative issues for everyone to read. I bet some of your old friends would indeed be only too pleased to try and support you - you just may be surprised!

I sincerely look forward to your reply and I hope one of the male members may comment (just because I do think that sometimes being a male with Fibro can present some emotions and feelings that other men can truly relate to)

Hope you are feeling as well as possible and if you can try sitting outside for a while to get a dose of Vitamin D. The late Prof.Davies (well his team Dr Choy, FMS Clinic, london) advised me to go outside and sit in the sun for 5 mins each side without sun cream before applying protection, although obviously not in midday sun (when as you know it is at it's strongest!)

All the best

Emma

[Admin_AFMCG Partner]

Hi again Jamrichmond,

Sorry - I forgot to mention - Living with Fibro too, I understand the symptoms you are struggling with and until you are able to get adequate healthcare there are other things you can try like Warm Epsom Salt baths and/or Wheat Bag Heat Therapy. You may want to look at your diet and try to avoid MSG.

I don't know how sensitive you are to medications, but you may like to ask your GP for the pain relief cream Capsaicin (prescription only) to try although I would always suggest a patch test as it is very hot!! (made from chilli peppers), again link below;

arthritisresearchuk.org/art...

Also if you need to talk to someone in person, the Samaritans are always available on their freephone number (don't worry about picking up the phone, I am sure there are many people who have used there service to get through touch times including myself)

samaritans.org/

Hope you feel better soon

Emma