Hi Guys
I’ve been reading a medical study on the prevalence of Behcets and Fibromyalgia, I tried adding it here but it won’t let me (let me know if you want a pdf and we’ll sort it directly).
Also this led me to the ‘Behcets Disease Current Activity Form’. Does everyone have experience with this form? I don’t but I score worryingly highly on it. Again let me know if you want a pdf?
I guess what I’m interested in is the link between BD and FM and the specific indicators suggested by the study that seem to tie the two - fatigue, headache & arthralgia (which I’m really suffering with).
Are there many out there like this? Ulcers are not a massive problem (I’ve had them for 45 years you get used to it), but the list on the BD Current Activity Form is a mess for me-
Headache - oh hell yes
Mouth Ulceration - yes
Genital Ulceration - no
Erythema - yes legs
Skin Pustules - ankles yes
Joints - Arthralgia - oh hell yes
Joints - Arthritis - yes shoulders, elbows & spine
Nausea/vomiting/abdominal pain - abdo pain yes
Diarrhoea+altered/frank blood per rectum - no
Fatigue - I could sleep 24 hours a day if the pain allowed me to
a red eye - no
a painful eye - oh yes
blurred or reduced vision - yes
...well the form continues like this. I’ve been referred to the COE in Birmingham but it was just before the outbreak and they’re v v quiet.
Does everyone get results like this? I’d I don’t get some more suitable therapies/drugs I’m going to go nuts. Have morphine and a load more but far as I can tell it’s not a list of BD drugs
For anyone with BD and FM - how easy was it to get a diagnosis?
Thanks everyone 👍
Hi, I am very interested in both of these. You sound like you suffer with the same as me. I have a diagnosis of both and the pain for me at the moment is just getting worse. All down my arms hurts and into my hips. I have to sleep in the day to get through the day. And like you could sleep 24hrs if it wasn’t for the pain.
I would love a pdf of these please.
Jay x
V happy to forward. Are you able to share an email address please?
How were you diagnosed with both?
I’m ‘in process’ on the fibromyalgia bit because of the lockdown.
The fatigue, headaches and Arthralgia are just awful. My surgeon tells me that not moving is the killer, but that’s not entirely true is it? A bit of movement ok, too much and it’s wheelchair time.
Luckily I was able to crowd-fund a very lightweight wheelchair last year, such a blessing there was enough spare to buy a decent walker too. Do you use mobility aids?
I’d be keen to know what drugs you are on please? Because they only recently realised the Behcets is causing it all I’m still on my spine meds, so no specific Behcets drugs. It’s all v well taking morphine but the Naproxen is pretty useless. Can’t take oramorph all day, not sure what the Zomorph is doing?
It’s great to hear from you
Jon (aka Furst)
Hi I am in Australia and have been on medicinal cannabis (CBD and THC) for 3 months and I have had big improvements with my FM and BD. I am also on Actemra weekly injections. I am off methotrexate currently as I had my hip replacement op on Thursday last week. It’s amazing how us Behcets and FM people deal with pain. My Ortho saw my x rays and could not believe I was still walking. At the op the femur was mush. It had gone necrotic and cystic and had moved out of alignment due to the mush. It’s fixed now so I hope to be on the up as my other symptoms have all improved with the cannabis. If there’s anyway you can try CBD legal or otherwise you should give it a try. I wish you well in your journey. I have been diagnosed for 22 years.
Thanks so much for posting - I'm fascinated by the use of CBD - i'd never contemplated checking that out but I will now. Much appreciated