Will I ever have the energy to work full time ... - Behçet's UK

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Will I ever have the energy to work full time again?

Megz3377 profile image
Megz3377

Hi all. I'm Meg and live in Connecticut. I was diagnosed in 2011 with BD after 2 years of the 'text book' symptoms. I went of of work on disability in May 2012 for what I thought would be a month, two at most. Needless to say, I still am not back at work (OR veterinary technician) and am discouraged that I am beginning to think (or realize?) I most likely will never be able to return to my job in the veterinary field ever again. I am currently receiving disability benefits as well as federal medical assistance....which is fabulous because my IV Remicade infusions every 4 weeks are expensive! However, my general chronic fatigue and joint pain have actually worsened over time. 2 of my last 3 flare ups (which occurred over the past 2 months) left me with 20-30 oral ulcers each time....which again......worst I have ever had. Usually I would get 1-5 oral ulcers. Ulcerative colitis apparently wants to be my new BFF now as well.

I'm thinking I have to learn to accept that unemployment, SSI, financial hardship and chronic illness is my future. However, I have NEVER been one to give up....on anything. I don't want to accept that I will be fatigued and lethargic and in severe pain for the rest of my life....am I in denial?

Thanks everyone. I welcome any and all feedback

-Meg

17 Replies

Hi Meg, No, no, no, it is not all gloom and doom. We all suffer differently and with our symptoms, some more than others some only a few symptoms at a time and some all at once. You must stay strong and positive then anything becomes possible. You cannot let this disease run your life. I have suffered Behctets for 32 years and it took 12 years to get a dignosis. Also back then hardly any doctor had heard of it let alone know anything about it. Also some of the symptoms I had I was told were nothing to do with Behcets whereas nowadays I see it is definitely Behcets. Diagnosis, treatments, meds, research and knowledge are getting better year after year. On my journey with BD I have managed to have 2 more children, divorce and remarry, and pop in and out of work at least part time. So it is up to you. Don't be afraid to push yourself when in remission, rest when you have a flare, but never give up!!!

Hope this helps.

Hugs

Billi

hi Meg

i have just been told that the doctors are 99% chance that i have Behcet's but i am waiting for a diagnosis.

i am off work at the minute as i have had a flare up as they call it.

they first mentioned a diagnosis to me in accident and emergency where there just happened to be a doctor that knew all about behcets and he rhymed off a list of symptoms to which i answered yes to all of them.

then they sent me for blood test and so on, but i went there with ulcers.

you have to try and stay positive as i know where you are coming from when you say will i ever get back to full time work.

i work in a very busy office and going from that to sitting around doing nothing is driving me crazy.

i am not a person who can sit down and do nothing, i need to be kept busy. My family have been great and the doctors are trying their best, but they are only general practice gps so they don't understand Behcets at all.

i am on sick pay at the moment and cannot claim any benefits until i have had a diagnosis, although i don't want to claim benefits i would much rather be working.

we are struggling at the moment financially, but like everyone says, your health is more important than money.

i do hope you get well enough to go back to work in the future

keep positive

kind regards

Pam

Dear Meg May u get well soon Plz b optimistic. I have recently been got diagnosed of Behcet's. Although I have symptoms since my childhood now m of 31yrs. M on methotraxate 25mg colchicine Neoral 100mg n deltacortil 5mg. My skin lesions start getting better but thy appear on n off.My low grade temperature n body aches n fatigue r not improving even pains n fatigue r getting worse I also have joint effusion at my ankle which I hate most becz tat cause me limping n I feel very awkward but hundred thousands times thanks to Allah Almighty tat my condition is much than of urs n not suffring from any financial problem. My hot flushing is getting worse my think it might b getting worse bcz of neoral is anybody suffering from flushing I don't know wat to do? Anyhw Meg I ll pray for u May Allah Almighty bless u with health n wealth n may u live happily evrafter Ameen.

Hey dear, hang in there! When reading your post i thought you may be writing about me! Our timelines are practically identical! I believe I've had this since chilhood. We suspected in 2002 when i was in nursing school. Had a major flare, went on prednisone and pushed through. Things were under control in under 2 months. After that i would take prednisone if symptomatic and never more than a week and I'd nip it. In 2011 (sept) got my diagnosis, and started plaquenil. I ignored what my body was telling me until i woke up one day Oct 2012 and could not move....many different drugs and 9 1/2 months worth of prednisone later-still off work (although i did try going part time for 6 months in there but was a total fail!).

I've been off work since June '13 and keep waiting for something to "happen". I get the odd day where i don't feel so bad, but have this crushing fatigue and joint aches,skin ulcers on and off. I hate to complain as I know there is ALWAYS someone worse off than I.

Any new meds i can put in front of my rheumy at my upcoming appt?

Currently on Enbrel, colchicine , plaquenil and clonidine for BP.

I'm sending some good thoughts and vibes your way:)

G

This is a UK drugs pathway behcets.nhs.uk/images/downl... I hope it helps.

Thank you! I forgot to mention that i live in Canada.. -29 *C Brrrrr,lol. I will print it and show my rheumy! Merci ××

Gen

I am unfamiliar with any new clinical trials. I have tried numerous medications over the past 4 years. I will list them incase that's helpful. Prednisone as needed during flare, Plaquinel, Cholchicine, Humira, Imuran, Methotrexate, Remicade.

Good luck at your appt!

-Meg

The only other meds I have tried are Humira (had an allergic reaction to it and it very similar to Enbrel), Imiran/Azathioprine which is a mild chemotherapeutic and it made me very nauseous, methotrexate which also made me nauseus however not as bad as the Imuran and IV Remicade which I still getting at the hospital Once every 4 weeks. its a 3 hour infusion and I am treating it well. I actually feel worse of I miss a dose. The only problem is, I am still flaring up constantly and febrile almost everyday. Which I had better results to share about the meds I have tried. Thinking a change in my medicine regiment will be sooner rather than later!

Hi Meg,

Just to echo the welcome and positivity above. Fatigue and cognition issues snuck up on me a couple of years ago and we adapted, as a family.

Everyone - Armodafinil and Modafinil? Ratchet, stick this in front of your GP. :) (Brand names Nuvigil and Provigil in UK, also available in USA Meg, don't worry but not sure of brand.)

I think they have been mentioned here before but I'm verbally hanging out the bunting and opening the fizz to raise awareness of their possible usefulness.

I tried Armodafinil (150mg) and frankly, I couldn't be more delighted. It's not a perfect fix but I'm not complaining; the size of my useful day doubled. Trying Modafinil (200mg) now instead for comparison.

Beau.

Thanks to you too! I will do at my next appt. That is coming around the corner....will mention to you as well that i live in butt frozen Canada...don't find too much knowledge here, although I'm on my 3rd rheumy and she's by far the best. My trip th NYC in 2012 was a wasted one for a certain specialist, the shopping was superb though;)

Gen

Sorry Gen, I didn't know you were in Canada. I think the common form there is branded as "Alertec" but you can obviously get others. I hope you can get something and it helps; apparently there are a group of people who are genetically locked out to its effects.

Megz3377 profile image
Megz3377 in reply to Lebeautemps

Thank you for the advice! I certainly will mention it to my doctor this week!

Hi Meg,

Bless you - I totally sympathise with what you are saying. I'm 32 and desperately want nothing else but to be back enjoying my full time work. Up until a year ago I was managing full time work, admittedly I had to be careful and rely on my family to ensure I rested between shifts (I did ward work as a nursing sister.) I went in to a big flare in January 2014 and was told by the COE to take a month of work, unfortunately, a month became 9 months and I've had so many complications I'm now unfit to be doing ward nursing. I'm only just about managing to work part time and I really miss my "proper" job. Like you though, I'm a determined character - I never give up. I'm a fighter and I won't be beaten by Behcet's. It is hard to accept that we sometimes have to make life changes / compromises especially when they are forced upon us like through illness. Many people have said though that they have found their BD easier to manage when they have changed jobs / made lifestyle changes as it has helped them manage their BD too. Sometimes being too determined and pushing ourselves regardless (or being too hard on ourselves when we are so poorly) is not good for us! BD is a journey and it can take a long time, not just to get diagnosed but to find the right combination of medication for you. Don't give up hope. There are lots of people who have had terrible times with their disease but then have long periods of remission from their symptoms between flares, others have symptoms to manage all the time but do so very well and are able to manage work etc. Everybody and everybody's disease is different. With regards to your symptoms and the severe pain - is this from the mouth ulcers? I feel very sad when people suffer from severe pain, I feel that these days this should never be the case. I use a triple mouthwash solution (steroid, antibiotic and antifungal) that has been very effective for my mouth ulcers (also Azathioprine and Prednisolone systemic medication.) I do have to rely on more "heavy duty" pain killers for some of my other symptoms but I've learnt not to give myself a hard time about this. Is your Behcet's consultant approachable and have you discussed your concerns with them about your disease management and how you are coping? Are they willing to consider changes to your treatment regimen? There always lots of people on here willing to give support and advice. Anyway - just realised I've been "going on" far too long - I apologise but hope I've helped? I wish you luck and I hope that you find treatment that works better for you soon and, that you are able to get back in to work. It will happen, it might just not be when you think or you may need to think about a change in hours etc. X

You're absolutely right, there is a fine line with being determined to fight and it causing so much stress that we flare up. I currently am trying to find that fine line, and will admit sometimes my stress does induce flares.

I am 31y/o and also have discovered that everyone's symptoms greatly vary. The longest I have gone between flareups is two months….However I usually flare At least once (more often twice) a month. As soon as the first flare is gone I get a few days and then it's back. I have started taking prednisone when I notice early signs and hopes to decrease the severity. It has actually worked a few times, and other times not so much.

I use a lidocaine swish and spit for the mouth ulcers. It is fabulous however it does not last longer than 30 minutes. It takes the edge off though and I cannot imagine not using it. I tried azathioprine but it made me very nauseous. I also had nausea with methotrexate. I get IV REMICADE Once a month. I also take more heavy duty pain ER for my joint involvement and a herniated and torn disc (L5-S1) in my back.

I love your advice on the fact that changing my meds but be necessary. I am actually going to discuss with my rheumatologist a change in medication regiment next week. I was very stressed last week, my grandmother passed away on top of numerous other things, and I took prednisone as soon as a oral ulcer erupted. Three days on prednisone and I woke up this morning unable to move, temp of 101, 30 oral ulcer and 1 vaginal, shortness of breath and excruciating joint pain (with right knee and hand swollen). Was so surprised that my flareup is so bad considering I have been on prednisone. Needless to say I went to the emergency room, received IV Solu-Medrol and actually feel much better now.

Gob bless and I will pray for your health. Thanks for writing! im always here to chat or if you need someone to vent to!!

~Meg

I agree with everything you said. I have found acceptance in that I have this disease and need to take every day as a gift. I have seen a therapist/psychologist as well as pain management and continue to do so. I'm not sitting around feeling sorry for myself every day of my life. I donate my time to non profit groups, craft daily and sell a few things on Etsy, make YouTube videos and much much more. Due to my immunosuppression my doctors won't let me return to work anywhere. My only options are to 'work' on my good days from home. You're absolutely right about stress and anxiety causing much more harm than good.....but I cannot help but be anxious when each month I am not sure if I am going to be able to pay my rent. I love the hobbies I have discovered since my time off of work, but at the end of the day these hobbies are not going to guarantee that I have a roof over my head.

I certainly do not feel useless and no longer worry about work. Yes, I worry about how I am going to make ends meet each week and wish I could return to veterinary medicine but know I can't.

I think I need to discuss a different treatment plan with my rheumy because my quality of life right now, with all financial stress aside, is what I cannot accept. I cannot imagine the rest of my life feeling like Inhave for the past 2.5-3 years. I'm miserable!

In the meantime, one day at a time is my motto. Staying busy for my mental sanity is easy, eliminating financial stress however is impossible.

I'm terribly sorry to hear of your financial hardships and encounters with crooks and frauds! I assumed, and somewhat hoped, someone experiencing a similar situation to me would reply… As to selfishly make me feel less alone. I now feel badly for having that thought, and I'm sorry you are in the same situation as I am. I hope to God that with time I can become as positive and strong as you are. I want your optimism on life to be contagious. I will pray for you and your partner.

I completely understand that doctors just assume we have family to help us financially, and emotionally. I do not have that luxury either and sometimes it's frustrating and embarrassing to have to admit that to them when frankly, it's none of their business.

Thank you for the tax advice. I have meticulously take an extremely detailed notes of every sale. That will not be a problem for me fortunately.

God bless you. I truly admire your strength. Hopefully one day I can be a small fraction of as strong as you.

Meg

Hi Meg - I'm in New Jersey!! Diagnosed three years now with BD after over 20 years of strange symptoms. I am fortunate that my symptoms are pretty well controlled on 150 mg a azathioprine except for pain, fatigue and shortness of breath - right now. I think there really is not a single great answer to your question especially due to the variability of the disease in each individual as well as what can be its episodic nature. I have always faced it like this. I do what I can - when I can and try to listen to my body and be kind to myself. I am a physical therapist with my passion being manual therapy as well as a myofascial practitioner and massage therapist. So unfortunately it has become difficult for me to perform my job especially to treat 8 patients a day manually in my own practice. I chose to close my practice and when it became available I jumped on a part time job that I work three days a week with benefits and do less manual physical therapy. Those days though are exhausting and as I am a single mom, it can be hard to even stay awake after work. I weigh everyday as it comes with Hope being my best friend, hoping to get to a place where I feel like I am thriving not just surviving. Doctors and family think at times that being on disability would be the best for me. I think our challenge with BD is to become creative with our careers and then to see our potential for other careers as being viable options. However, disability remains an option. Just remember, your first priority and JOB is to your health.

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