My boyfriend has Ankylosing Spondylitis and he’s pulling away from me.

Posted , 11 users are following.

So my fiancé and I have been together for a few years now. He’s had AS with major flare ups, sometimes not being able to walk, using a cane at times and crutches. He gets stressed because obviously he’s very limited to daily activities. He cannot work as he used to, it’s hard for him to rest, and even sex is sometimes unbearable. I love him to death and won’t leave him, I just need help with how to help him. I feel like he’s increasingly becoming depressed and surpressing his feelings from me. Please help, those who have AS and know what he’s going through.

0 likes, 13 replies

Report

13 Replies

  • Posted

    Hi Monica,

    I recommend he seek a rheumatologist who can help him manage the inflammation with the right medicine. I've been through the flare ups and it seems the times when I have almost no pain has been when I am on a biologic drug. It really helps to keep trying other biologic drugs when one doesn't work. I went without for years but now I am on Cosentyx and it really is a life changer. Unfortunately, I did not manage it well before this and my spine is curved over now. I'm also on a nonsteroidal drug, Voltaren extended release and doing a gluten free diet. So far so good in the last month. I hope this helps.

    Report Reply
  • Posted

    Hi, I'm sorry to hear this. Is he on any kind of medication? I've had AS for 2 yrs and had very bad flear ups not been able to walk for a week... Medications help and for me swimming and walking (when able to). It's sounds you are very patient with him which is important. Unfortunately being depressed is part of this condition as well. I hope he will get through his flear up quickly!

    Report Reply
    • Posted

      Yeah I’ve been patient with him, but when he can’t walk I can’t see him because he wants to be alone. That’s why I feel like I’m being pushed away. Currently he’s on prednisone 20mg.
      Report Reply
    • Posted

      Hi Monica,

      Chronic pain is very tough to bear.   When it gets bad, I’m most comfortable alone in my room for various reasons. 1, I limit my difficulties of having to interact with others when the pain is overwhelming. 2. My intellectual capacity becomes substantially incapacitated, and I can often not communicate well, and sometimes I can be mean - even through I don’t want to. 

      3.  With fewer distractions I can focus on feeling better. 4.  Depression is notorious for going hand in hand with chronic pain. And there can be a snowball effect. (Occurs infrequently for me.). Etc., etc...

      Others have given some good advice for your fiancé.  My advice for you is to not try to manage his illness for him.  I hope he is getting the best care. A good general practitioner and rheumatologist at the minimum. Pain Specialists, Physical Therapy and others can possibly be life changing.  What works for one with AS doesn’t work for another. Usually finding the right combo of meds, exercise, diet, stress reduction, etc. helps reduce flares. Education can help you understand AS and chronic pain.  I like the UK websites NASS.co.uk and PainConcern.org.uk.

      Care for him, and yourself. Self-care is important for caregivers to keep your energy and spirits up and to prevent burning out.  

      I wish both of you all the best!

      Report Reply
  • Posted

    His AS sounds very severe and as if he doesn't take any sort of decent medication. Does he see a rheumatoligist? If so, what is he prescribed?

    As a man with the same prescription I have found any and all NSAID prescription worthless, but biological meds such as Enbrel and Humira make a huge difference. Narcotic painkillers have been a blessing, by both decreasing pain, increasing mobility, sex drive and keeping me in good spirits. It might not be a politically correct thing these days to take painkillers, but the benefits cannot be discounted. Just be aware that dependence and tolerance might comes with use. Addiction and abuse can be avoided if he sees a good doctor who is compassionate.

    People with Arthritis should have a right to be able to access any form of pain relief available.

    Report Reply
    • Posted

      He has seen a rheumatologist and has been prescribed prednisone which he is currently on now. The doctors have told him to get on Humira but the side effects sound ridiculous, so he decided to not take it. So the only current med is the prednisone but he has completely changed his diet, only veggies, fruit, chicken and water. He has seen dramatic results from this alone. But he does still have flare ups but doesn’t know what’s triggering it. 
      Report Reply
    • Posted

      His immune system is triggering the flare ups Monica. AS is an autoimmune disease. Absolutely nothing will control it other than a medication which suppresses the over active immune system, such as Humira, Enbrel or Cosentyx.

      I know the possible side effects sound scary. I have been taking a biological med for almost 15 years now and I have experienced some infections. I have had a couple of infections in my eyes, which could have been iritis caused by the AS or me not being careful with my contact lenses. I had a case of pneumonia, which may have also been my fault for taking the Humira when I got a cold.

      You have to consider one thing, when I started taking Humira I felt like I was CURED of AS, that's how much of a difference it made to me. I have to take painkillers due to the damage that the disease inflicted upon me before immuno-suppressant drugs became available.

      Absolutely nothing will help him more than taking one of these medications. I am 100% certain of this.

      Report Reply
  • Posted

    I'm so sorry to hear this.

    I know this maybe sounds counter-intuitive but he has to move as much as he can. He needs to see a doctor asap. When my flare up got so bad I was put on cortisone which stopped it. This is not a great option and when I was prescribed it since for not such a bad flare up I wouldn't take it. But it helped me immensely when I was unable to move and in horrible pain due to back muscle spasms.  

    My protocol was not to take NSAIDs since they are bad for the stomach. I changed my diet (look it up diet for AS which is basically no starch diet, I also cut out the sugar and am now stopping all fruit for a while due to some other issues I'm having). 

    I do yoga, stretching and would go swimming but our public pool is in a horrible condition. I try to walk at least 45 min a day. Going shopping doesn't count it needs to be a proper walk. 

    I know it's hard but he has to take care of himself WITH your help, you cannot do things for him. This is happening to him not to you. 

    You mention depression. He should also seek therapy. Even though there is a cause for his depression it's not less serious than what people usually think of when they use that word - everything's fine but a person's still unhappy, loses interest in activities and people he liked...

    I would also advise caution when it comes to dealing with depression alone including OTC drugs (St. John's Wart) let alone abusing prescription drugs.

    What he can do is guided meditation (there are some specific for pain as well!), mindfulness practices (google Jon Kabat-Zinn)... it REALLY helps for AS and depression.

    Wish you all the best!

    Report Reply
  • Posted

    Hi Monica,

    Look into proper nutrition. Meds managed most of my AS symptoms, but I didn't go into long-term remission until I got my eating right. I was bed ridden for over a year, and my whole lower spine fused over. Now I've been off all meds for 8 years now, and skateboard every day at age 53! I needed to go off all processed and high starch foods. In a nut shell, if it cannot be eaten in it's raw state, it is not real food. Eat all your potatoes and veggies and fruit either raw or cooked, but stay away from grain/flour/wheat/rye/barely like the plaque. Gluten is being connected to more and more autoimmune diseases (causes the intestines to dump undigested foods and toxins into the blood, which triggers immune system).

    Report Reply
  • Posted

    Hi Monica I can relate I think although I haven't been diagnosed very long (6months)I think when you get a flare up it brings home how severe the condition is especially if your used to being a very active person and sometimes I take it out on my wife who is active and goes to several gym classes it  is unfair but understandable I am 42 and have to accept my five aside football days and circuit training days are over but as I say it is hard if you have been an active person,best of luck

    Report Reply
  • Posted

    Hi Monica !

    I have had as for many years only being diagnosed this year. I am 35 no children etc. yes he needs to see docs which I’m sure he does but to answer your question to the best of my ability I understand how he feels.  My husband wanted a child with me and I could never have one in this condition. I couldn’t pick up, chase after or even carry a child. This can make you push away. Sex, physical intimacy is extremely hard and painful. Another reason to push away.  Things I use to do like running, bike riding , rollerblading , horse riding will be as part of my life again.  My career I worked very hard for is on hold.   My friends don’t want to hang with me because I don’t stand up well or walk well (I need 2 hips) I mention all this stuff because I’m sure he feels similar.  It makes you question things, your relationship, your partners happiness, god all that. It tests your mental condition and many other things. All I can say is be patient. We live with a lot of pain. We can be cranky, sore etc and it rarely gets “better” If he is tired on date night stay in and order food. Understand this is a difficult thing to live with. He may think he can’t be the type of man you want , but if you love him relationships are compromise.  Don’t push, but if you can’t live with someday maybe no sex and I’m not sure if you have kids etc but knowing he might not be able to do too much etc you have to think so you don’t get resentful toward each other.  My husband is mentally ill, I’ve been patient and understanding for him and he is repaying me now ! So I hope you guys find a balance ! But since you go this far I think you’ll be ok ❤️ Best Wishes 

    Report Reply
  • Posted

    Hi, I was suffering for over a year with the worst flare up of my life. I have had some really down times. I hope maybe what I learned can help you. There are some different levels of depression that you feel well going through the pain. The things that my boyfriend did that helped the most was, he asked me if I needed anything, just as simple as that. no specific things just hey do you need anything. when i was tired and in so much pain and just wanted to curl up in the dark. he did to, just curled up held my hand and napped/relaxed no talking or chatting even if he had a million stories to tell me. he was just there for me. He never expected me to feel his feelings about me pulling away he just had to trust that I loved him. He had to be a rock. So I could get better and focus on me. Its exhausting being in so much pain. Everything takes more work. your slower and it takes so long to do the "easiest" things. With that said. I felt so selfish because I didn't even have the energy or the ability to focus long enough during the pain to listen to his stories about his days. At a certain point you end up feeling like your never going to feel better. I love walking down by the water its relaxing and so pretty. I thought I was never gonna get to walk by the water without pain again. That thought hurt. It was debilitating. When you feel like that you need something to give you hope so you can start to fight to get back the most important things. My bf took time to find ways so I could do things that i loved even if I had to do them differently. He made the foods I love because it made me smile. And when I didn't smile. He kept doing them. He didn't give up. So. DON'T GIVE UP. I hope that helps give you ideas of what you can do for him.

    For ways to help with the pain. He does have to walk a little or move and stretch at least. My bf would help me stretch I asked him to help. But guys are stubborn so you might have to offer to help. With the help I was able to stretch further and deal with the pain better well stretching. As for the Medication. Prednisone will help get some inflammation down. However it is not a long term medication. He will have to stop taking that at some point. it is terrible on the stomach and liver. I recently started Humira (in combination with methotrexate.) It has helped so much. There are a lot of risks but there are with any medication. For me the benefit outweighs the risk. Also anti-inflammatories are just terrible on the stomach. I do hope he reconsiders the medication. I hope you guys all the best.

    Report Reply

Join this discussion or start a new one?

New discussion Reply

Report as inappropriate

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up