Behcet's Syndrome Society
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Feeling sorry for myself

Hi all , well after my flare a couple of weeks ago and seeking help from GP ( which wasn't helpful ) and little trip to a&e I'm feeling low ! I'm fed up of my hands hurting in my joints and all my muscles in my body , I just want to sleep all the time , my body is exhausted, I go to work for just two hours and I need to rest as I'm worn out !! I'm so exhausted I can't even lift my arms as its like someone has the pinned down , I could just have a good cry right about now and don't want to talk to my family as I'm sure they will get fed up of me moaning soon , I just don't seem to be coping even holding my hairbrush hurts :(. Sorry I just had to let it out as I'm screaming inside

5 Replies

Sorry to hear about all this, Sam. I know how bad joint and muscle pain can be - I find moving around actually helps a little. I sometimes have to get up in the night an make a cup of tea, and this helps more than trying to get comfortable in bed.

Moving all your joints through all basic movements every daycan keep your joints going and stop them seizing up even more,( aspecialist reecommended this to me) and I find helps get movement back rather than make it worse if that makes sense.

Are you on any disease controlling medecine? If not - is there a way you can pursue this with drs?




Hi Sam.i known just how you are feeling the pain and tiredness is so hard to cope with and nobody really understand.iv been so lonely with all this so I really do feel for you.i take tramadol pain killers and I still in pain.all i can say is try and keep going and enjoy life when ever you can.x


Hello Sam,

I know how you feel and sympathise with you. Are you on any specific treatment? If you are it obviously is not working well. Can you phone a specialist nurse at your consultant's ad ask for some guidance, or even see if you can get an earlier appointment? You must need something to help your pain, and the tiredness. I found Infliximab to be a total wonder drug, but after almost five years, I no longer have it because it has stopped working. :(

We don't mind anybody having a good old rant as we are all in the same boat. (Unfortunately not a nice cruise liner, either) lol

Rest as often as you can. GPs are often useless. I have a pal who is a GP, and she admits that people with rare conditions scare her a bit, because they are not trained to deal with them. I am very lucky that my GP went to the bother to consult the Behcets Syndrome Society, and now she is up to speed.

Sometimes it is necessary to make a bit of a song and dance if you are not getting the right treatment. I wish you all the very best, and remind you to put your feet up for a few minutes and have a nice cup of tea.

Very best wishes, Suzanne.


Hi Sam, you are entitled to a good old rant on here - feel free - you've had a rotten time. What medical support are you getting (aside the GP?!) Can you be seen at your COE? Where are you at with your treatments? It's funny how we are very protective towards our family but I'm sure that they would want to be there for you if they knew how much you were struggling. That said, I do understand that the symptoms of this disease are so difficult for people to fully appreciate and understand, the fatigue especially. It does sound as though you need to be seen and clinically assessed ASAP as I'm sure that there will be things that can be done to help you. Emotionally, it's really hard not to get down when the disease is active and the symptoms are so bad and this is normal when we are living with such a chronic condition that impacts on life so much - if you are at a COE that has a psychologist they can be a really good source of support for this. Keep posting (and ranting if it helps) and I hope that you find something that helps you soon. X


Sam, sometimes we all need to rant away my friend. This is what worked for me.

I think it's important to let your body rest without guilt tell yourself I'm going to stay in bed for a day maybe two with no guilt. Then have a plan to get up and move around as much as possible. Have a family member or friend there to help you get up and do little things around the house. For me it was taking a shower or making sure I ate a meal with my family. Those connections with your family/friends are really important. I was so exhausted last year I couldn't make it in to see my Doctor I was so physically and mentally drained. My husband had to get me up daily....he reminded me that it's ok to feel bad it's not my fault Im in pain. He also made an appt with my Dr. and went with me. Just remember Doctors have an obligation to help us and if you are exhausted and in pain take a friend or spouse with you to the Dr. Appointment have them make sure you get help. After some good rest get up and make an urgent appointment with your Doc and don't let them leave the room without a plan for you and a follow up appt to make sure the plan is working. We do what we's a day to day disease and sometimes minute to minute. You will have better days to come. I wish you lots of luck!



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