Illiac Crest pain

[Chihuahua1]

Hi everyone.Thank you to all those who share their experiences. I really find it helpful to follow what happens to others as well as comparing results with my own issues. I have developed a problem with pain along the left illiac crest, radiating into the spine at waist level. The pain is not the same as the pain I was getting when first diagnosed with PMR a few years ago and the latest flare up has been in neck shoulders and head, resulting in an extra diagnosis of GCA. While the high dose of 60mg prednisone is controlling the PMR/GCA very well and I am starting the reducing this week, the pain in the crest is not responding. I have next to no pain when seated, or if I am standing, but leaning over at a 45 degree plus angle at the waist, but as soon as I try to stand upright, or walk more than a few steps, I get horrendous pain, have to stand still and bend forward again to ease it. Has anyone else had this sort of reaction? The doctor doesn't believe it is related to the PMR/GCA. Any input would be most welcome.

[Zoesquare1]

Hi Pauline

I had such troubles when I was spending very long hours at a desk job. Maybe it's the same thing, I don't know... my pain was due to a shortening of the ligaments & tendons running from pelvis to low back & spine due to being in a seated position all the time. I also had shortening of the tendons / ligaments running from pelvis to hip joint and hip joint to knee.

Physical therapy did me a world of good - they taught me how to stretch all of that 3-4 times daily. The stretch that helped me the most was the classic runners quadriceps stretch. You can google it. Start slow and easy though.... Hope it helps.

[Chihuahua1 in reply to Zoesquare1]

Thank you for your response Zoesquare1. I am registered disabled because of spinal damage including ruptured discs in lumbar and cervical regions, which have been like that since 1992. I used to work in an office in logistics until I retired 2 years ago. I was very lucky where I worked as my bosses had no objections to me getting up from the desk and moving around the office and warehouse,so sitting for long periods never became an issue for me. At the moment I am almost pain free when seated and can stand for a period of time, as long as I am bent forward at the waist, leaning on the back of a chair or similar.Within a couple of minutes of trying to stand upright however, I am in agonising pain and the crest is even tender to the touch. It almost feels as though I have banged it on the corner of a table or some such injury, but I haven't. I have various ailments including PMR, GCA, Arthritis, Spinal damage etc. and I am on strong painkillers as well as pred, but they don't seem to touch it. The doctor offered to increase the dose of the painkillers but I don't want to go down that route as it will effectively make me housebound. I cannot go anywhere if I cannot drive there. I'd be climbing the walls if that were the case.

[Zoesquare1 in reply to Chihuahua1]

Hi Pauline,

Oh, I'm so very sorry you have so many health issues going on and for this new area of pain. It must be very discouraging, as the painkillers are such a short term option. I hope you are keeping your spirits up and finding ways to enjoy yourself while you are seated, at least....

This sounds like a small thing, but have you tried a little ice on the painful area?

hug,

Zoe

[Chihuahua1]

Hi Zoesquare1.

Having had many of my health issues for several years I have learnt to deal with them and not let them pull me down too far. After all there are people who are a lot worse off than I. Like everyone at some point or another I occasionally have my moments where it gets to me, usually when I'm overtired; but I soon bounce back and get on with it. There is no point whatsoever in allowing my problems to rule my life. I try make the best of a bad situation. I don't want to be miserable. You don't live any longer, it just seems that way. I have a good support network with friends and family and as long I am not tied to the house, i.e. I can go out either on my disability scooter or in the car I'm fine.

I have tried cold compresses and hot compresses and I have tried alternating them too, without relief, but I'm determined not to give in. We shall overcome one way or another, but thank you for your concern. Sometimes it helps to have a general rant at no-one in particular, just to vent some tension. It helps to hear that you are not alone in your struggles and gives you the will to carry on. Only those who have experienced PMR and GCA truly understand the pain and problems that are presented by these conditions. We don't need sympathy, just a little understanding when it becomes too much and we have the occasional flip-out. It is so helpful to have a group like this where things can be discussed and sufferers can relate.

[Zoesquare1]

Well said, Pauline. Especially like the idea that we don't need sympathy, just a little understanding. That hits the nail on the head for me!

Also this group accepts without question the symptoms I report and doesn't ever make me feel like it's all in my head, which is annoying to no end!

Hugs, Z