Painfull wrist , hands , fingers , shoulders

[samhawks]

My hands , wrist , shoulders and fingers so painful and at times it's feels so heavy to even lift my hand up , let alone move my fingers ,, my musles hurt aswell as my joint , never had it this bad , don't know what to do with myself

[Michja]

If u r on medication maybe a bath switch Epsom salts may help. A physio said its important to find the right thing for your body. It may he either heat packs on joints or cold packs. Thinking of you and look after yourself.

[lesleyg]

I've had it so bad I couldn't hold the phone to my ear for anything longer than a minute or so. I use voltaren which helps with the ache. My worst attack lasted a few months - I notice it is starting to come back - hopefully not as bad.

[goodlife]

I agree with Lesley I've been unable to hold a mobile phone up to my ear....like a baseball bats been struck full force across my limbs.

There are drugs but they need to be built up slowly.... gabapentin and oral morphine. Your GP can prescribe these but obviously I'm not a doc and I don't know what other meds you are on.

It's the worst part of the BD for me....it's excruciating.

Are you off work right now Sam? Jill

[billi]

Hi Sam, I can tell you it does go away but it tends to come back worse each time. My upper body was always worse, neck, shoulder, arms, elbows, wrists and fingers. Many years ago they told me it was nothing to do with BD. Now they seem to think it is BD. I also now get in in my hips, lower back knees and ankles. I am now on strong meds. 1500 Gabapentin. Daily and more at times and 2000 co.odamol same. I also sometimes given liquid morphine at the hospital. My advice try to hold of the meds, especailly the hardcore like mine as a bit like steroids you get too used to them and next time the pain comes it feels worse......sorry to tell you this. Start with creams, gels, heat pads etc also exercises gently to start, then mild drugs, Tramadol works for some.

Hang in

Hugs Billi

[samhawks]

I already take those drugs and have for three years for my back , I'm working doing my care job but to even write in people care plan books is hurting , let alone giving care to them ,, I finish at 5 today and will be going home to sleep till the morning

[Hidden]

Hi Sam,

Sorry to hear you are suffering the same way too.

I have been off work for a month now battling with joint pain and weakness, along with other issues. Like you I kept on going to work doped up on a cocktail of drugs. It wasn't until I was on Gabapentin, mod-release Morphine and Oramorph along with the other drugs I had already been taking to control my BD, before I had to be signed off work. Well I had no choice! The company I work for pretty much got me signed of by the OT who works for the company. My G.P has signed me off since then.

Finding a balance with the meds that eases the pain, but still allows me to have a good quality of life is proving to be tricky.

I'm very slim because I lost lots of weight due to bowel problems, so normal adult doses hit me like a sledge hammer.

Being a carer is a strenuous job Sam, my Nan has a team of carers how help to look after her and the stuff you guys do is very demanding. Getting myself dressed is tough going these days, let alone getting another person dressed.

I hope you find some relief soon Hun C x x

[lesleyg]

Hi Sam

Is there any way you can retrain for a different job or even better get on a disability pension?

I think we all go through stages where we are going to tough it out but in the end we have to think long term. I've been like Cg and struggled to get dressed at times - thank goodness I'm a bit better at the moment.

Just a thought - are you able to type up your reports? My fingers have been so bad typing is a problem but the iPad is fine.

Lesley

[chocalatedog]

Ii have this too including my elbows !

[billi]

I agree about a career change,not so sure about the disability, Reason....when it is your upper body that is affected eg holding, lifting, carrying etc they are not interested and suggest equipment to use or help from others, also changing bathroom etc etc. I know I tried many times and couldn't get ant help until it started to affect my lower limbs and I have just recently after30 years managed to get a disabled badge for parking. Speak with your GP or consultant but remember that more drugs or extra drugs does mean extreme tiredness. Could you work part time maybe. Ii do feel for you and wish you well.

Hugs

Billi

[suzannenmike]

I find that chronic arthralgia (pains in joints) is one of the worst parts of having BD. Although, of course, there are other symptoms such as ulcers which are painful and unpleasant. I have to avoid NSAIDs because BD has affected my kidneys, so I am prescribed Fentanyl patches, paracetamol, with oramorph and amytriptiline at night so I can sleep.

We are all different, and drugs affect us in different ways, so you should talk to your doctor about your pain. There a many drugs which can help you.

Good luck, and I hope you feel better soon. xx

[samhawks]

Thank you for all replying , I had to drag myself out of bed today along with a killer headache , I've only been in my job 6 months due to being stuck at home 3 yrs after two back ops , I'm trying hard to keep going but every so often my body don't keep up , I was going to add more hours to my work load when my youngest starts school but not sure if that a great move , my boss just up my work this week so from today till Sunday I'm working 42 hours , god I hope my body can keep up as every time I've done a big week like this I end up in hospital with something , hope it's just bad timing and nothing else , I'm still not mentally ready to tell myself to slow down and I'm sick , think that is why I still do home care , I shall talk to my GP even tho she is horrible to me all the time and makes me feel like jumping of a bridge with her comments

[CrystalAngel1]

Hi Sam, I can really sympathise - I am a nurse and have worked really hard to get where I have in my career but I am really struggling right now. One of the things I struggle with most (even when I'm not in a flare) is managing fatigue and my joint pain - especially my hands and writing notes and care plans is a particular challenge. I'm about to go back to work after 3 months off following a big flare. I am really grateful to the London Centre of excellence who have all been fab. I'm on a huge cocktail of drugs including steroids, immunosuppressants, pain relief and migraine meds. I am only 32 and the idea of giving up work for good is really hard - it's all I know / want to do. A couple of years ago I tried a less ward based job and hated it. I know we have to be sensible and take care of yourselves as much as we can. I'm hoping I can keep working for a bit longer - even if I have to reduce my hours a bit more. I have been having physio and make sure I get plenty of rest too. It's tough because I find friends / colleagues find it hard to understand that I need to just rest between shifts and it doesn't leave much time for socialising and I don't get a good work life balance but it sort of works for me right now. I find some complementary therapies help me too (aromatherapy / reflexology) and I practice mindfulness too (the psychologist at the London Centre helps with this!) I hope you can find the right combination of treatment and therapies for you and please, if you can, take some time off work to get things under control first as I found out the hard way that pushing yourself to stay at work and try and get through it doesn't work. Hope you feel better soon. X

[samhawks]

Thanks for the reply , I love my job and at 35 I'm not ready to give up ! Your right I need to get my headaches sorted as new meds don't work for them and my hands wow I've never had this pain / pains before , time to get to a doctor again

[thegoodmom]

I have seen a lot of good advice on meds, work, disability, etc. if your doctor is really as horrible as you describe, I also sure hope you find a doctor you trust and can talk to, who treats you with dignity and respect. Every day is a struggle for me this past year and a half (in full flare, with also relatively newly diagnosed Secondary Adrenal Insufficiency, likely due to Polyendocrine Autoimmune Failure -- & Neuro-Behcet's). But I count my blessings every day that one of the most wonderful things I have going for me is an amazing primary care provider, who listens to me, supports me, and always treats me with dignity. Every patient - but especially every chronic illness patient deserves that! Our lives are hard enough without our "caregivers" making it harder, so please believe me when I tell you it should not be like that. Please do not settle for or accept that kind of treatment. Find someone ( a medical provider) who hears you and treats you correctly, and much of the rest may just fall into place. Or, it may not - it may still hurt just as much - (I do, but I like you, am choosing to remain more active than my body thinks I should - for my mind and my soul) -- but trust me, it feels light years better just knowing you have been heard, you matter, you're not crazy, whiny, or different.