Hello everyone, hope you are all enjoying the festive season. I've had BD since I was 16, was diagnosed at 18 and although I am not in remission I am able to manage the disease quite well and can somewhat cope with flare ups now. I have a new symptom and wondered if anyone had the same. Really irritating nagging pain in base of spine and bottom (perhaps this is the coccyx) I have arthritis in knees and it feels like the same kind of pain. I am waiting to be seen by a physic but the pain is getting worse and leaving me less mobile so wanted to see if anyone has suffered the same and what they have done.
Thanks in advance and best wishes for the new year xx
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emilyb93
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Hi Emily, I do hope you had a good Christmas. I have suffered with BD for over 30 years and although the first 15 years were hell (mostly due to no diagnosis, passed from one specialist to another and mainly because there were very few doctors who had even heard of BD and very little knowledge of the disease itself. Thankfully there have been great improvements in every way and now like you I cope very well. Yes I had and still have pain in my back but was always told it was nothing to do with BD. Through This site though I have found a lot of the symptoms I had then and some still now are or could well be BD. More people are presenting with the symptoms I had all that time ago and that were dismissed. I think you should have a scan and see a consultant for your spine if only to rule out certain other conditions. I say this because I went to numerous physios and even privately to chiropractors etc and it was about 8 years before I finally had a scan and although it only picked up on degeneration at least now they listen to me and admit physio is a waste of time for me. You are young and you need answers now, so fight your corner. Do let me know how you get on and what you are told....would be interesting to compare. Something else I always tell other sufferers is to keep a Behcets diary every day of how you feel, symptoms old and new etc etc. Also if you have any visible symptoms anywhere take photos all of this is useful to take with you to any appointments as I know from experience I often used to forget to ask or tell at my appointments, also good if you are travelling makes life easier. I do hope some of this helps and you get some answers.
Thanks so much for your reply. I think you're right and it is Behcets related but they just haven't figured it out yet, because it does feel like joint pain. Behcets diary is a good idea for tracking episodes ect so I will give that a try. I am going to contact the centre of excellence since my nightmare gp won't refer me!! Thank you and happy new year xxx
I have had the pain you describe, I have BD and relapsing polychondritis.
I'm under the Behcets centre of excellence in Birmingham and they manage both conditions. But to cope with the pain you describe I use topical ibuprofen gel, well cushioned chairs, not baths and yoga. Accupuncture helps too.
I can't understand why your GP won't refer you ? Unless you are in Wales ? as I know they have to pay a few hundred pounds up front to access the service. Is there another doctor at your surgery you could see ?.
Hi Lettie, thanks so much for the advice I am going to try ibuprofen gel as that sometimes does the trick for my knees. My gp said that there is a new scheme in my area where they won't refer me straight to my hospital but they will refer me to a physio team first and see what they say. I'm going to contact centre of excellence tomorrow though hopefully they are open. All doctors at my go seem rather unhelpful and condescending at the moment
Thank you again for your advice and taking time to comment.
Definitely speak to the BD centre, they will advise you on how to progress things with your GP. I was referred to the centre by my rheumatologist so had no problems but getting a referral to the rheumatologist in the first place was a drama :)).
I have cofirmed BD for more than 15 years now but have had the condition undiagnosed for all of my life up until that point.
I get really bad pain in my coccyx area which I always believed was BD but a couple of years back I was diagnosed with Psoriatic Arthritis which can be an off shoot of BD and now I have pain in my hands very badly as well. The reason I am telling you this is that the pain in the coccyx is definitely a well known problem with PsA and I was told that I had developed that from the BD so maybe it would be a good idea to talk this through with your Rheumy? It is possible you are developing something else like PsA on top of your BD ? Best to catch it in the early stages and get that controlled as well if it turns out to be the case for you !
Of course, it may not be that at all but it's just one more avenue to consider in our complicated world isn't it ?
Hey! Thanks so much for your reply. I am going to research this now as its come up a few times. It's so difficult as when you get a new symptom it's easy to blame BD as its such a terror!! Will discuss all with Rheumy at centre of excellence.
I've read a few people here have ankylosing spondylitis on top of the BD. Sounds "easy" enough to diagnose with MRI(for detecting inflammation) or X-rays(to see if something is just out of place). Looks like treatment is physical therapy and NSAIDs too. here's a few links to help figure it out. like I said I don't have it- but I've read quite a few people on here have it with bd too.
Thank you so much for spending time looking for links, that's really kind of you! I am overwhelmed by the support on this forum it's amazing. I will keep you all posted when I get back from dr. Xxxx
Hi my name is chris age 41 I was diagnosed at 25 I have bad lower back pain and middle of back it's degenerative disc disease I have with my back and I have a superpubic catheter because of my bladder problems this has been for about 9 years I've also got lots of pain in hands elbow and knee pain and a lot of other problems too many to mention
So when you can see spinal specialist ask for scan of your spine to get it fully checked out as I would like to know if any other sufferers have similar issues as I've been told some of my problems are not related to BD if I can be of any other please message back many thanks
Hi Chris, thank you for your message. I also have joint pain in knees, hips and hands. I'm sure this must be related as its quite a few of us with these problems. I will definately push for a scan of some sort as I have never had one and seems like the best was to find out, although I'm sure the pain in my spine is very similar to that of my other joints.
I promise as soon as I hear back I will let you know, I'm sure I'll be adding another problem to my ever growing list haha.
Greetings Chris. I'm in the U.S. and both my daughter and I have been diagnosed with BD by a well versed Rhuematologist at The University of Pennsylvania. Final diagnosis came after punch-biopsy of lesions were done by U. Penn dermatologist which I haven't seen mentioned by many others on this sight and hope it may be helpful information.
I myself have had the mid and lower back pain for many years and catscan did reveal degenerative disk and arthritis so I do believe there is direct correlation to BD. The doctor prescribed lidocaine pain patches which are help greatly in addition to prednisone.
Both my daughter and I have bladder problems that seem to flair the same time as the BD particularly if we ingest drinks or foods with a high content of vitamin C. I've read some articles about BD being triggered by allergies and wonder if there's a connection? Have you or anyone else here ever had the allergy testing (through blood work, not skin testing and seen a connection?
Keeping you in my thoughts and prayers my BD friend!
Thank you for replying to my message it is very useful information as you tell me about your daughters also suffering with BD,
the specialists in the U.K. Tell me there's no link to hereditary being passed through the jeans, but I'm starting to learn a lot of sufferers that have children some also have the same disorder,
It's a very disabling disease at times,when we all have flare ups ,and also day to day life does get very painful at times and very unbearable, but as they say,
the show must go on,
I just hope in the near future they find a cure for us all.
I believe there is a hereditary link as my mum also has Behcets and was diagnosed in her early Thirties after numerous failed diagnosis. Also theough the centre of excellence I have met two people who also have parents with BD
Many thanks for your reply I will ask specialists next time I'm there to see if they would look into both of my girls because same as me they have had lots of medical problems over the years and still suffering with some of the symptoms on a daily basis.
I will let you know how we get on many thanks again for your reply.
Just want to say a huge thank you for all your responses I'm so overwhelmed and grateful for the advice and support. Very lucky to have found this group and you amazing people. Thank you all and stay strong (when you can) lots of love and well wishes xxxx
Hi emilyb93 If you aren't already a patient at one of the CoE and your GP won't refer you, then your existing consultant can also make a referral. This could be anyone who has treated / diagnosed your BD in the past. Good luck.
Hiya, I am seen at the centre of excellence in London but haven't been able to contact them as it was Christmas period. My GP has referred me to a physio but I've not heard back yet. I am going to call c of e again tomorrow and see if they can see me any sooner. Thank you
Hi all, I am new to the group and I am so glad I found you all xx I was diagnosed in 1994 at the age of 24 the treatment back then was heart medication, steroids or thalidomide. I refused all 3 meds and tried to cope with it myself. Over the years I have had huge flare ups including ulceration to my eyes, nose, neither regions and hands, awful tiredness , blurred vision amongst other things but I have horrendous lower back pain and have done on and off since 2005. I slipped disks have degeneration. I'm currently off work with pain and have been for 2 months.
Do any of you suffer with awful itching and very painful skin? This is a new thing for me but it covers my entire body when it flares up. I also have painful tongue and swollen lips.
I would appreciate any feedback. My gp says that there is nothing he can do!!
Glad you found the group sorry it's taken ages for a reply!! I often suffer from painful skin during a flare even too painful to sit on toilet seat. Consultant said it's BD related but don't know the cause. I use ibuprofen gel ok skin when it's really bad xx
Thank you emilyb93, it's horrible isn't it! my gp has prescribed a huge dose of antihistamine which I have to say is really helping, I tried not taking one, to see if the sore itchy skin returned, and it did so I took one and within 30 mins, the symptoms eased significantly. Have you tried antihistamines? Xx
No I haven't tried antihistamines actually so will give it a try on next flare and let you know. My skin is rarely itchy though just very sore to touch and sensitive to cold. Very bizzare. Glad you've found something that works. Xx
hi, i get dreadful pain in tail bone and had it removed yet it still hurts so bad and i am certain its from the BD. I want to know if others get a sore scalp? and my palms are always bright red ? anyone have this?
oh yes, bad pain and even had tail bone removed which did not help. Pain relief and hot water bottle is all i can do for it now as well as learn to deal with the constant pain
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