Doryjay

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

Furst in reply to Doryjay

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)

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Stablest in reply to Doryjay

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.

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Juliauk10 in reply to Stablest

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

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gillianTS

Possibly what you had been reading.

Fibromyalgia in Behçet’s disease: a narrative review, published 2017:

ncbi.nlm.nih.gov/pmc/articl...

The scoring is from the International Society for Behcet's Disease, not able to provide the PDF but hopefully the link will work from the below, the form dstes from 2006 I think:

google.com/url?sa=t&source=...

Take care.

Gillian

Juliauk10 in reply to gillianTS

Thanks for the info gillianTS - the 2012 article I found was something different.

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Furst in reply to gillianTS

Thanks Gillian. Good papers

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Suzywhizzo

Hi Furst, yes please I wld like a pdf. Thank you for sharing your story. I have Bechets? Still not fully diagnosed, but I am on colcechine. Don’t think I spelt it right.

Take care Suzy

Furst in reply to Suzywhizzo

Please send email address? I have papers and a few score sheets but for some reason it wont let me post them on here? (Though I might be doing it wrong).

Jon (aka Furst)

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VeronicaJoy

I have Behcet’s and have those same symptoms I would like a pdf please?

Furst in reply to VeronicaJoy

Please send email address? I have papers and a few score sheets but for some reason it wont let me post them on here? (Though I might be doing it wrong).

Jon (aka Furst)

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nictol

Hi, I have both fybro and Bd, and both of them were diagnosed at the London Centre of Excellence. That is the place that you really need to get to. They literally changes my life 10 years ago. The current activity form is given to you (along with several others), every time you attend a clinic. I have different drugs for both conditions. Azathioprine, and colcochine are my main BD ones, and Pregablin is for fybro. Then amitriptyljne and naproxen are the cross over drugs. For me it was a revelation, to treat the disease, and not the symptoms. Rather than chucking loads of steroids and analgesics at the symptoms, the amazing team at London, treated the diseases. Within months I could walk, talk and eat normally again, and start to leave the house, and gain a little of my life back. I think once you have one auto immune disease, there is always a chance of another one. I also have hypothyroidism, and that is always affected my a flare of one or other disease. Sorry for rambling, but I really do feel your pain, and just wanted to say that it is possible to gain some control of the flares, and the awful, indescribable pain that goes with it. We are warriors of pain, and our strength is unseen, as is our pain. Stay strong furst, there is light at the end of the tunnel. Nic x

Furst in reply to nictol

Thanks

I am going to the COE in Birmingham. Because of CV I have to start soon with a phone meeting, but I’ll still see them when things settle down

How do you get on with Amitriptyline ? It turns me into a zombie. Also I am a bit over sensitive to the gabapentin family, pregabalin is better than Gabapentin but I’m still not a huge fan.

I’m an very open minded though!

Thanks

👍

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nictol in reply to Furst

I have been on amitryptiline for years now. I take it about an hour before I, go to be and find that it doesn't affect me that way. I take it for the behcets headaches, which were horrendous, relentless and lasted for weeks at a time. I now only get a muzzy head, or a light thumper, and increased brain fog. I was originally on gabapentin, and lost my life for about 2 years, as you said, I was a walking zombie. I was very lucky to be referred to a specialist pain consultant. She overhauled my pain meds completely. Over a period of 3 months, she weaned me off gabapentin, and on to pregablin. It was honestly like remembering and recognising myself again, and bloody scary the state I had been walking around in. I know it's the same family, but a completely different beast. She also believed it was a great help for fybro patients,helping with the alot of the widespread pain. I now also take slow release tapentadol one in the morning, and one in the evening. It works so well, without a detrimental affect on me. I think the worst thing about some of the meds that we need, to be able to function, most times have awful side affects. I feel like I am constantly doing a juggling act. I've had to take a lot of steroids over the last few years, and I think they are the devil's work. Sometimes they help, but mainly make me feel like something is turning me inside out, while burning and feeling like your being poisoned. Have you had periods in your life where you feel like your in one long flare? I have definately felt like that over the last few years, and every time I get on top of one symptom, another one pops it head up! Anyway that's a little bit of my journey with the beasts. Are you flaring at the moment, and which ones are the worst? Regards Nikki

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Furst in reply to nictol

Thanks Nikki

I feel I’ve been in one long flare since @ 2014.

Also I really get the headache thing, it’s like they never really go away and when they’re bad it’s horrendous. Also because of where it hurts my GP says it’s stress - what a load of rubbish! If it’s stress why do I wake up with them?

Do you suffer photophobia? The pain related to that is unbearable. I wear a blackout mask to sleep even at night.

Anyway. Thanks for replying. I wish you all the best!

Jon (Aka Furst)

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nictol in reply to Furst

Ah I had that with the headaches, and said exactly the same as you! I was also told i had herpes, for nearly 10 years, cystitis, IBS and prickly heat, at the first glimpse of sun, and stress headaches! I was made to feel like a real hypochondriac. I do have photophobia, which is linked in with my skin. If I was out in the sun for any time at all my whole body would erupt into 100's of tiny boils, that would turn into ulcers, and get infected. I never get that, since taking azathioprine and colcochine, but do have to wear sunglasses at the slightest glimpse of sun.

I really sympathise with you being in a flare for so long. It can be very, lonely, isolating, and quite traumatic at times, especially if you are dealing with medical professionals, that refuse to believe you have behcets.

Do you have support from family and friends? It is so hard, when often you don't look sick, as its all going on inside. You definately need a sense of humour, and an inner core of steel to deal with a life of illness.

I wish you well, and that tomorrow is better than today.

Nikki x

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Furst in reply to nictol

Thanks Nikki

The thing that bugs me the most is feeling like a hypochondriac. That feeling like everyone around you has heard it too many times already.

All my best

Jon

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eyeflyfish2

Hi. I am in the US so I can only answer for what it was like for me.

I have both of these diagnoses as well as trigeminal neuralgia. The diagnosis for Behcet's took YEARS (as I am sure it did for you) and the Fibro came a few years later. I am a veteran so everything went through the VA. I applied to have my rating increased because of the new dx of fibro and was awarded a rating for that and eventually my rating was increased to 100%. The rationale provided by the examiners is that 70% of Behcet's patients ALSO have fibro and that statistically there is a correlation that fibro is caused/exacerbated by Behcet's.

It was relatively easy on that level. The data is there and numerous studies have been conducted (Google Behcet's and Fibro concomitant). Here in the states, each system that Behcet's affects gets a different doctor; I currently have two neurologists, a rheumatologist, pain management (I do not use any narcotic so this is for steroid injection), a gastroenterologist, Opthalmologist, and physical therapist. I also have my primary care doctor and mental health therapist.

As for symptoms, I get ulcers EVERY month. I get about three weeks in between flares and I learned the hard way that stress exacerbates it. Along with the flares comes the extreme fatigue and body aches. I also have persistent headaches and facial pain. When I was still working in my high stress field, it was not uncommon to have 30 or more ulcerations both orally and genitally. I too have the arthralgia, visual changes (loss of peripheral vision and uveitis), body aches, fatigue, arthritis, diarrhea, etc. All of the symptoms that we are all too familiar with. I also have neurological changes but so far that has been attributed to the lack of sleep and fibro pain. Needless to say most days are rough and very rarely do I have an "excellent" day.

As to medications, I have run the gamut. Although I despise having to take them because of the side effects, this is what my doctors have finally concluded is best for me:

-Humira 20 mg injection per week to decrease the Behcet's inflammation. This also makes me immunosuppressed.

-Gabapentin for pain. Oh my God I hate this drug but I find I can't function without it. I take 300 mg every three hours for a total of 1500 mg per day. I KNOW when it is wearing off because I become weak, confused, and heavily fatigued. I stay close to home because it is too dangerous to drive when this wears off.

-Verapamil for headaches. I currently take 80 mg three times a day. This is a calcium channel blocker so I have to be careful that my low blood pressure doesn't bottom out.

-Xanax 0.5 as needed. Some days I don't take it but on days when my head is so bad that I literally want to die and I am hyperventilating, I take it. The pain last year sent me into a suicidal spiral which prompted the use of this as a short term fix.

-Ambien 12.5 every night. Fibro has been shown to correlate with sleep disregulation as pain doesn't stop when you are asleep. I have persistent severe insomnia and sleep interference; this has been clinically documented as secondary to fibro.

I was taking Plaquenil for the arthritis but Plaquenil causes toxicity over long use and can lead to blindness. Because I have had uveitis, this was stopped. The Humira has been helping.

I hope this helps answer your question. Good luck and never stop advocating for yourself.

Furst

Hi Fish

Thank you for that excellent mail. Really interesting. The 70% statistic is v important, next time you see them can you find out what paper/study they base that on please? Physicians are very evidence paranoid here.

I was diagnosed with BD when I was @7 in 1977. Then I only had mouth ulcers but they were so severe I nearly died of malnutrition. My upper oesophagus, throat and most of my mouth is entirely scar tissue, ulcers ate my tonsils & uvula.

I still get regular ulcers but it’s everything else that bothers me really, especially the Arthralgia, fatigue, eyes and headaches. The list is long though. I so totally get the sleep interference too, my nights are broken in pieces.

I hope to get the diagnoses bedded-down properly asap after the Covid lockdown here. Not sure how they’ll use drugs though.

I tried Gabapentin once. When I reached 150mg I lost ALL proprioception, no spatial awareness at all. So no more of that, I’m ok with Pregabalin though.

I wish you all the best. Do you get to fish with your condition? Fly fishing is a beautiful thing.

👍 Jon (aka Furst)

OpsDave70

In addition to what you describe, the Behçet’s has killed my pituitary because of loss of blood flow. This means I have very little, if any, Endocrine function. My initial Behcet’s diagnosis was in 2007, but I can tell you that the pain in my body has gradually increased to a point where I cannot function without pain meds. My body doesn’t regulate its own salt-water balance, so I have to take DDAVP shots twice a day to try to retain some fluids. I also have a damaged sensor that regulates body temperature, so I run moderate to high fevers almost daily. Right now, I feel like I am just barely hanging on.

Furst in reply to OpsDave70

Dave I’m so sorry to hear how badly you’re suffering.

It’s difficult to comment on your story except to say I hope you are in good care and getting emotional and spiritual support.

All the very best to you

F

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SCMW

Hi, I’ve got both. FMS diagnosed first in late teens, Behcets nearer 40. I had no treatment for the FMS & felt much worse when the Behcets kicked in. I don’t know if I’ve always had it, but the symptoms I had lifted with colchicine. I had had genital ulceration & not known it - i had scarred so don’t discount it even if you think you haven’t had it. I went in via the private system in the UK, NHS first time around then private. That led to a COE who confirmed diagnosis from local rheumatology. Immune suppressants will likely lift the way you feel when conventional pain killers just don’t cut it. If you try nortryptyline that might work better than amytriptyline as you are less likely to feel drowsy. For headaches, check out the BASH headache guidelines or NICE guidelines & work out your triggers. Mine didn’t really get much better until I went in a beta blocker & had Botox nerve blocks. So it’s a bit trial & error, it wasn’t easy but getting the right diagnosis is key. Best wishes

Furst

Thanks v useful 👍

Mja75

I have bd and fibro/chronic fatigue. The fibro/ cf is killing me. I can’t do anything anymore bkz of exhaustion, pain, intolerance to even minor activity. I am on tons of meds trying to treat this, but only prednisone seems to touch it. If anyone has any possible answers,please let me know. I don’t know what to do anymore....

Also, is anyone else with fibro/cf experiencing chest congestion that leads to bronchitis whenever thinGs are bad ( which is often). I am constantly congested and since I am asthmatic, I am finding that if I use my inhaler when my muscles get tight from the fibro, I then cough up a lot of mucous ( about 2 hours later). Sometimes this can help me to avoid infection but when the fibro is really bad, I get a chest infection 2 or 3 days later.........

Furst

Sorry to hear about all that, you are really suffering and while it’s comforting to know I’m not alone, I am so sorry for your problems and wish you good health.

I don’t have the chest thing but the exercise intolerance/fatigue is awful. It’s kind of made a bit worse because my wife (who has a borderline personality disorder) just doesn’t get why I can’t do things and why I sleep a lot. She can be quite outspoken.

All the very best wishes to you 👍

Bless you my friend.

Dayzi

Hi, I have Behcet’s (diagnosed in 2015) and fibro (diagnosed 2018) too and would be interested in the paper/form.

I have been very fortunate that - after a string of local consultants (I’m in bristol) who denied I had Behçet’s (Despite having a diagnosis from the Birmingham COE, who then contacted said consultants and educated them on the disease) - I found a Local rheumatologist who specialised in Behcet’s.

It was very easy getting a diagnosis of fibro from him (and Birmingham COE agreed when I next saw them) - they were aware of the link. Amytriptiline has made such a big difference - I take it at 8pm to reduce being a zombie the next day. Though the thing that has changed my life is exercise. Before... the pain, fatigue and headaches could be so unbearable, I could hardly sleep and was constantly in tears. My skin felt like it was just burning and wearing clothes could be unbearable. And I would get random shooting and stabbing pains everywhere. I couldn’t speak properly from the brain fog and was even considered to have neuro behcets because my speech was so affected and had several scans (Which all came back negative so they put this down to the fibro).

Getting to a point where I could exercise took time. I was diagnosed when I was in uni and was very active - I was on the committee for the hockey team. I went from that to not being able to walk, being bed bound and having someone else care for me - arthritis was my worse symptom, though the genital ulcerations made moving even more painful. I went on sulfalazine (disease modification) for a year (2016-2017) and although was taken off due to funny blood tests, my arthritis has never gotten that bad again.

To start exercising/moving I was referred to a physiotherapist and hydrotherapy (by my rheumy). I also took Slow release 1600mg ibuprofen (and omeprazole to line the stomach) which was honestly my saving grace when my arthritis started to ramp up again from exercise. It was odd because I have taken so many different pain killers And NSAIDs and stronger ones too, though 1600mg ibuprofen is the ONLY thing that has given me true pain relief.

I am now (or was before cv!) at the gym which has a swimming pool for gentle exercise and have never been fitter since I was diagnosed. I also booked a few personal trainer sessions at the beginning with someone who specialised in rheumatic conditions and could advise on exercises to try. I still get fibro and joint pain, but not like before. If I stop exercising/moving I notice such a big difference in my pain levels - though it is a fine balance as to not aggregate my arthritis!

I have also just started a new drug (Azathioprine) though that is to handle the ulcerations which have been flaring more in this last year - although perhaps that will work with my underlying joint inflammation too - but with fibro I sometimes can’t tell where the pain is coming from!

Sorry for the long post - I hope some of this helps!

Furst in reply to Dayzi

Hi

Thanks for your message. I never suffered like that when I was young, can’t imagine how tough that was.

I can see what you mean about exercise, not walking is a big deal. Problem I have is spinal spondylosis means when I exercise too much I get painful legs - I have to balance it.

I’m interested in what you say about Amytriptiline making you a zombie, I’ve had that for the spinal problems and it was a big deal for me.

I have a couple of articles, they say similar things so I didn’t search for more (I’m a Uni Lecturer so have good access). If you are able to pass on an email ad I can send them, it wouldn’t let me put them here.

Also see the other replies I had here. There’s a US military veteran here who says the US VA consider that 70% of Behcets patients have FM.

My Rheumatologist in Birmingham says I probably have B + either FM or Lupus. Alas I’m still at an early stage with them so no further diagnosis during lockdown.

All the best to you. Great to hear exercise is working, ironic that the thing you couldn’t do is becoming your saviour.

Jon (Furst)

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