Help need some advice

Posted , 5 users are following.

I am a 34 yr old female after having back pain and pelvic pain I had some blood tests done and came back positive for hlab27.. I went to the doctors yesterday and she said that she will refer me to neurology which is fine as my dad has spomdylitis my issue is that I have been reading about spondilitis and it dosent say anywhere about pelvic pain in the mornings my neck is really stiff and the bottom of my back feels swollen and my coccyx hurts but I have this grinding pelvic pain I think I could actually cope with the back pain but the pelvic pain can be unbearable. I also have shooting pain and muscle spasms in my legs and I also get a weird lip tingling sensation and a strange tummy almost like ibs symptoms (no diohrrea or constipation) just like my tummy is about unsettled. I have had a full blood count and everything else came back fine. The doctor didn't seem concerned about my pelvic pain or my funny tummy she said it's all to do with my spine but Im not too sure..has anyone else had these symptoms?

0 likes, 7 replies

Report / Delete

7 Replies

  • Posted

    I'm sorry to hear about your health problems.

    I can't say that I have all the symptoms that you mention.

    Unfortunately, it is quite normal for AS suffers to have morning stiffens anywhere or everywhere. Apart from what is typical for AS (lower back), my left wrist get swollen and painful very often.

    I experience muscle spasms in my left leg. I feel that somehow I'm exercising more pressure on my hamstrings there causing the spasms and tingling. This improves when I watch how I'm sitting or with massage. However what your describing sounds more serious. They definitely need to check if AS has caused some nerve damage.

    IBS-like symptoms are not uncommon, since there could be a link between intestinal problems and autoimmune diseases (I have two). I used to be bloated all the time. So I started watching what I ate even on an AS diet. For me, no grains (any kind of grains not just gluten), no dairy, low on starches... does the trick, BUT, I have also recently started taking enzymes and it has immensely improved my digestion.

    I'm not sure I understand what you mean by "pelvic pain". Ovaries? It could be also irritated colon. If you get bloated as well, it exercises pressure on other organs.

    Until you get the results, you can improve your life style. Clean up your diet, get rid of the inflammation triggers, improve your gut health and digestion and, if your doctors allow, exercise.

    Good luck!

    Report / Delete Reply
  • Posted

    I think I do have some nerve damage as little while ago I had tingling in my legs and feet this has now gone I believe the problem is my coccyx when I move sometimes it feels as though it moves apart and this causes me really bad pain the pelvic pain is I would say on my pubic bone and sometimes my pelvic bones I had a smear test which came back fine and an internal to look at ovaries and that was fine before the doctor told me I had high hlab27 I believed I had something called coccyxdynia which is inflammation to the coccyx due to posture where i have slept on sofa for a year I have read up on that and I have most of those symptoms so I was shocked when the doctor said it could be spondylitis as my symptoms are slightly different to spondylitis

    Report / Delete Reply
  • Posted

    yes yes and yes !!!!! sacroilitis and spondylitis are just awful! I have many of your same issues and can tell you i know what youre going through. stay strong and i have begun to realize that my mental health will continuously be brought to the brink of losing it because of the pain and frustrations associated with this disease. i wish doctors knew more about the cause so they could find a cure

    Report / Delete Reply
  • Posted

    yes yes and yes !!!!! sacroilitis and spondylitis are just awful! I have many of your same issues and can tell you i know what youre going through. stay strong and i have begun to realize that my mental health will continuously be brought to the brink of losing it because of the pain and frustrations associated with this disease. i wish doctors knew more about the cause so they could find a cure

    Report / Delete Reply
  • Posted

    Hello Melanie, I'm sad for you having so much pain to deal with. What medication did your doctor prescribe for you. I too have had all the symptoms you describe and was diagnosed 8 years ago. It has now progressed to many other things like incontinence and tooth abscesses and all sorts of other things. I can assure you that you are not alone with what you describe, many of us have the same as you do in fact even worse as time goes on. It's important to get the right medication now. Avoid Amitryptaline, but tramadol worked for me but now I have two or sometimes I.M. injections a day. Now my doctor has given me Fentanyl patches to try. They work but are very expensive and only last for four days. Hot packs do help in areas where there is bad pain. On the MRI ( which you should have too ) my spine looks like an S bend in the road, my arms are affected too due to spinal cord stenosis in my neck and lower lumbar region. I have ten vertebrae affected. I can't walk now and rely on a wheelchair. I do hope you find a reliable and knowledgeable neurologist asap..not many seem to know what we are going through so good luck with that. I send you hugs and wish you luck...Gloria

    Report / Delete Reply
  • Posted

    I have very similar symptoms Melanie. The coccyx pain is relatively new, but lower back, groin, hips and legs have been hurting off and on for years. Finally got an MRI approved and SI joint inflammation prompted a blood test which was positive for HLAB27. I have also been chasing GI issues and have dealt with food allergies for 10 years. Doctor says its oral allergy syndrome and my lips tingle and swell. I wonder if thats related to AS? Try not to worry to much. WE are not alone and people live with far worse! Thats what I tell myself when I get angry or depressed.

    Report / Delete Reply

Join this discussion or start a new one?

New discussion Reply

Report or request deletion

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