Home alone: Hi everyone I was diagnosed wit... - Behçet's UK

Behçet's UK

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Cooley0130 profile image
13 Replies

Hi everyone I was diagnosed wit bedhets last year July time I've been on Prednisolona for about 2 months now I was supposed to be at dermatology last week but due to covid 19 all appointments been canceled which I believe they was going to prescribe some steroids injection type anyway over the last week I've been getting pain in my left hand feels like it's the bone today it seems to be up to my elbow and getting these sort of cramps in my fingers probly like arthritis and I can't get anyone at hospital to check me my doctors have prescribed co codemol as a pain relief and they no no think about behcets is this bone pain part of the disease and is it going to get worse its scaring me as I just seem as tho am being pushed aside I no there's a lot going and are NHS are doing amazing but wot happens to me I live alone I don't no were to turn there also the possibility I will lose my vision in both eyes and yo top it all pip have decided not to help me and refused my claim is blindness not a sever disability any advice would be great as I am alone with this and I just don't no what I should do thank paul

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Cooley0130
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13 Replies
Juliauk10 profile image
Juliauk10

Hi Paul, sorry to hear you’re having a difficult time. Apologies that I don’t have any magical advice to make you feel better with the issues in your arms. Having been diagnosed with Behçets in 1993 I can tell you with many years experience that one of the worst antagonist for Behçets is stress. I can feel your stress in your post and would advise you to please try any relaxation techniques you can find to reduce your stress. In the long run it will truly help you get through this awful time. There are many Behçets sufferers out there living with this alone and sadly our aches & pains do not warrant medical attention in these gravely serious times when people are dying from this virus. Put your PIP situation on to one side until you feel stronger to appeal their decision but above all else try your absolute best to reduce your stress levels x

Cooley0130 profile image
Cooley0130 in reply to Juliauk10

Thank u juliauk 10 got ur reply its much appreciated

nysunshine12828 profile image
nysunshine12828 in reply to Cooley0130

I have bone pain sometimes that they haven't been able to explain, but what everyone is saying about stress really messes with our system. Hope it starts feeling better for you. Have you tried to see if you can do a TeleHealth call? I've done several of my appointments that way. I know I'm worried about getting my Plaquinel when it comes up for a refill.

Cooley0130 profile image
Cooley0130 in reply to nysunshine12828

Thanks for ur reply I have been on the phone and talked but don't seem to get anywhere think I put it down to the covid 19 so I try not to pester them

gillianTS profile image
gillianTS

Try using some topical gel like voltoral/ ibuprofen gel. Soak your entire hand and elbow in warm water several times a day, better still have soak in the bath. Stress is not helpful at all with any joint and muscle pain, you could try doing some gentle stretching around the neck and shoulders to help with your lower arm and hand.

With so much going on in the world right now everyone is having to deal with our cancelled appointments and procedures, changes to medications and treatments, we just have to manage the best we can and let those that need care the most get it.

Hope you can get some relief soon.

Cooley0130 profile image
Cooley0130 in reply to gillianTS

Thank u gillianTs for ur reply its much appreciated

Alex97 profile image
Alex97

I csn totally get how you are feeling. I was diagnosed with behcets about 8 years ago but suffered with many symptoms before being diagnosed. I have lost all vision in one eye and have very very limited sight in other and I am registered blind. I have an amazing ophthalmologist who is doing everything he can to help with my eyes and I have been on a string of different medication to try and control flares - my flare include cornea peeling and skin blisters. I was refused pip but I appealed with as many letters from consultants I could get and a copy of all my prescriptions. It must be so much harder in the times we are at and I can understand you bring worried. Stress brings on a lot of my flares so I try to concentrate on keeping stress at bay, I know easier said than done. Take care

Cooley0130 profile image
Cooley0130 in reply to Alex97

Thank u alex97 for the reply its much appreciated

lesleyg profile image
lesleyg

Hi Paul, I have had something extremely similar and all I can say is the good news is it does pass. I wonder if your GP could prescribe steroids for you in the meantime, sometimes just a weeks worth and then tapering it off might do a bit of good, on the other hand I found just doing the treatments as described below help. If possible not using that arm and hand perhaps even putting it in a sling. I also keep a range of hand splints sometimes with the metal part removed so it’s quite soft but that seems to help also.

Cooley0130 profile image
Cooley0130

Thank you lesleyg

lesleyg profile image
lesleyg

Let us know how you get on. Just remembered - I also find that raising the affected limb up on a pillow helps for some reason if it gets too bad.

Cooley0130 profile image
Cooley0130 in reply to lesleyg

Hi lesleyg well have tried my doctors now and they've only can talk on phone and it's hard to try and explain over phone anyway they really don't know any think about this and both times said keep your hospital appointments and as we all know they've been cancelled and doctor just gave me Co codomol which to be fair don't help at all as the pain comes and goes and when I try doctors at hospital they keep saying ill get a call back but as of yet nothing so I think I'll just have to ride it out until this covid 19 blows over and I can't complain as are NHS are doing amazing with what's going on but iam also try a few of the techniques you have suggested and it's helping so thank you for that let's just hope and pray we all can get back to normality soon. Thanks

lesleyg profile image
lesleyg

No Worries- if you just feel like a bit of a rant this is the place for it as we have all been through a lot, and we are now living in unprecedented times for everyone. It took me about 15 years to get diagnosed and most of the time i was told it was ‘in my head’ or I was causing the lesions myself, until finally a doctor visiting Australia from Ireland picked what it was on the first day he met me! Just shows we all have to be determined to find answers and treatment. Sorry but that was my little rant.

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