Getting help

[anniequk]

Hi have just joined this forum and i am in dire need of some advice. I was diagnosed with fibromyalgia back in 2009 recently diagnosed with EDS by my GP i have pain in many joints and my back is soooo painful the pain killers he has given me do not stop the pain and i am in agony all the time i can only sit for a while as my back hurts so much. The doc has said he sees no point in refering me for any specialist service as "cant see the point"I want to go to the doctor equipped with knowledge and want to be able to show him what the point is. I can not go on much longer with this pain. if anyone has any help or advice it would be much appreciated Thanks Annie xx

[Springsong]

Hi, it is a long hard battle to get recognition & understanding. The problem for a lot of GPs is that when it comes to EDS/HMS what will work for 1 person may not work for another. I have been able to manage my minor backpain with tablets & physio/hydrotherapy. My sister however suffered more extreme pain with hers (she described it as having an 'open wound' with somebody placing their hand inside) & after several visits to her GP for the same problem she was referred for X-ray/MRI which determined she had a 'slipped disk' within her spine. They operated upon her back but the relief was temporary as the 'scar' tissue healed 'around her spine' meaning she had to have a 'repeat operation' to correct this & may likely need more in future.

As such, you yourself need to question the extent of your discomfort & determine what you would like to happen to resolve it (would a course of physio help or make it worse, would you benefit from an operation & what risks are involved if you do take that route....). The only one thing for certain is only you can know what is 'bearable' & you will need to be firm in getting this across to your GP/consultants.

[daylyn]

I suffer a lot of pain as well. I have found that since going to pain management dr that I get injections in my neck and lower back for slipped discs and other things that are going on with them and also, I get injections into my knees. I tore my meniscus and they did do surgery, but since the surgeries, the pain has never gone away. The injections help a lot and I do suffer intermittent pain. I go every three months for the injections. They do lower back first, then 2 weeks later my neck, 2 weeks after that one knee at a time unless I have someone to drive me, because I wouldn't be able to ambulate if they did both adn I didn't have anyone to drive. LOL Then the cycle starts over again. This next round, I will not be having my neck done. It feels fine. It seems like the Dr doesn't believe me when I tell her that I AM in that much pain. She has prescribed me vicodin and percocet at the lowest does. I tell her that it isn't working and she tells me that she isn't going to give me anything stronger because she doesn't feel that it will be of any good. She along with many other drs in my area do not understand EDS. I did have a dr that understood that I WAS in pain and gave me stronger meds which helped some of the time and that I was NOT drug seeking. That Dr has moved away. All I can say is try pain management and see how that goes.

[Hidden]

There's a simple answer here: change your GP and get a referral. EDS is an incredibly specialist condition with a huge number of associated conditions.

[rowantree]

It is so hard. I am listened to. My GP is good, he has referred me. I have an official diagnosis from UCHL, physio, podiatry, hand therapy, foot and hand surgeons but I'm still in pain all day every day. Most meds disagree with me. It is a rubbish condition!