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I want to cry.. Hip Pain with no answers.

jesnort5
jesnort5 Member Posts: 4

Hi all,

I just need someplace to vent and get opinions. I finished chemo in October 2019. In September while finishing up chemo, my left SI joint and hip began hurting. The pain fluctuates but has been mild most of the time, though I feel it every single day. I had a CT which showed nothing remarkable, followed by an MRI a few months later because the pain was persisting, and now an X-ray today because it seems to be getting worse and we had done the other scans.

It's just uncomfortable and seems to be worsening but the scans show NOTHING. I honestly feel silly bringing it up at this point, but it's not going away and I want to cry out of frustration. I feel like I'll never get answers and the doctors will think I'm crazy if I keep complaining. I have tried PT and a chiropracto Any thoughts? Are there things (unrelated to cancer) that can't be seen on scans? Would love to hear thoughts. Thank you for letting me vent

Comments

  • alicebastable
    alicebastable Member Posts: 1,934

    Have you gone to an orthopedic specialist? That would be one of the best options.

  • sondraf
    sondraf Member Posts: 1,551

    The hip pain is likely referred pain from the SI joint and/or the lower lumbar. It could be sacroillitis - sometimes that shows on a scan as an area of inflammation, or sacroilliac joint dysfunction. Are you losing any sort of feeling or ability to move/lift your leg? What does the pain feel like - stabbing/burning or more of a soreness? Any radiating pain to the lower leg? Did you start doing any exercise when it started (after a long layoff for treatment) or did you perhaps step wrong off of a curb that could have jammed the joint? Finally, who is doing the imaging - oncology?

    I agree with Alice that if you aren't getting answers from oncology to seek out an orthopedist. The scanning they do for cancer they know what they are looking for but won't be as aware about joint issues. If they say they haven't found anything yet - thats a good thing! Suggests it could be more mechanical and you need someone who knows more about how the joints work to take a different look/view. To oncology everything looks peachy as in no mets, but to orthopedics they may see something that needs fixing (you may just need steroid shot into the joint to calm inflammation).

    Ive been dealing with a bad lower back and bad SI joint my whole life and it doesn't take much to jam up an SI joint - hence the question about stepping badly. When cancer set up shop down there it became evident through the fact I was slowly losing the ability to lift the leg to take a step forward and it felt like there was a 'rock' in the joint. PT made it worse, chiro made it better (who knows why!). I also had considerable pain from when I wrenched it doing an exercise class after a long period of no exercise - the muscles in my back weren't strong enough to support and protect the joint. Now my left SI is messed up and while I keep complaining about the pain, oncology keep telling me 'well, you don't have cancer there'. I know I don't but can you help me out a little more here?


  • jesnort5
    jesnort5 Member Posts: 4

    Thank you both for your replies! That definitely makes sense to see someone in orthopedics. SondraF - First, I'm so sorry you've always dealt with pain there, and now bone mets. Ugh. I hope you're doing as well as you can be with current treatments?

    Oncology has been doing my scans so I'm sure they're simply looking for cancer and could miss something if it's not super obvious. I actually spoke to my doctor yesterday and she put in a referral to Orthopedics. Hopefully I'll get some help soon.

    I would say the pain is mostly sore/achy, but it will also sometimes feel cold and numb. It originates right on and below the SI joint and gets worse when sitting on a hard chair, putting all of my weight on that leg, etc. I don't remember doing anything to it. It started up when I was pretty sedentary, dealing with chemo treatments. I used to exercise frequently and really cut back during treatment. I have wondered if that change brought it on somehow.

  • sunshine99
    sunshine99 Member Posts: 2,483

    jesnort5, this is a very interesting thread. I, too, developed hip pain after a sort of vacation I took with my sister. I did a lot of knitting during that time and was sitting a lot. I still got my 10,000 steps each day, but I definitely was sitting more than I usually do. It almost felt like my hip was fractured - although I've never had a hip fx, so I can't say how that feels. I finally went to my doctor and she ordered an x-ray. The x-ray showed only some arthritis in my hip and some scoliosis (which I already knew about).

    I still have the hip pain 8 months later. Sometimes it goes down my leg, sometimes it's in my lower back. The first few steps I take are always quite uncomfortable, but then it gets a little better. Sleeping is hard, because it hurts to move in bed. What did help was when a PT friend gave me some stretching exercises for my very tight hamstrings.

    I have an appointment with my MO this week and will ask her. I just find it interesting that we both experienced our symptoms after being more sedentary than usual. I'll be curious to see what comes of your pain and if you are able to get it resolved.

    All the best to you,

    Carol

  • SerenitySTAT
    SerenitySTAT Member Posts: 3,534

    I had severe sciatica before cancer. Undergoing chemo and rads made it worse. I went to many different types of therapists through the years. What finally helped was getting enough meds to reduce inflammation and pain along with postural alignment exercises and nerve flossing. I'm off all pain meds now.

    Here's one of the videos that helped:


  • minustwo
    minustwo Member Posts: 13,002

    Serenity: GREAT stretches. Thanks for posting.

  • SerenitySTAT
    SerenitySTAT Member Posts: 3,534

    I still do the hip crossover stretch on its own. Hope it helps you

  • alicebastable
    alicebastable Member Posts: 1,934

    The hip crossover is one of the best moves.

  • HeartShapedBox
    HeartShapedBox Member Posts: 117

    jesnort I've been going thru exactly the same thing! Like you, I was a pretty active person before cancer than then treatment knocked me down, and I've been really sedentary the past many months- lots of sitting, which I think is the cause! My pain is definitely focused in my sacrum and hips, but also radiates down my legs, and esp at night got quite intense and kept me from sleeping. The location isn't quite right for sciatica (for me), but there are different nerves the SI joint and piraformis can press on and get out of whack. For me, what has helped tremendously is doing lots of hip opener stretches, "pigeon pose" yoga and other stretches recommended for sciatica and SI joint pain, as well limiting so much sitting. I also got a yoga ball to sit on when I watch tv.

  • sondraf
    sondraf Member Posts: 1,551

    Im seeing a PT now for all this and the best, absolutely best exercises she has assigned me have been the Monster Walk and Skater using a light band around my ankles. Helps with strengthening the outer hips. Since we started those (and the lovely massage I got around my sacrum and piriformis last week) Ive been able to get off all painkillers (finally!) and it feels like everything is a lot stronger and moving in one direction. A tight piriformis can also make a hip hurt, so that pigeon pose can help with that. Always do a little warming up first!

    I too used to be really active and then a lot of stressful work and too much sitting then cancer and here we are. About two years ago I was working with a trainer weekly and that was the best my body every felt because we were working on my glutes, hips, quads, and some light chest and arm work. One of my PT goals is to get strong enough to get back to working with a trainer again. It really is use it or lose it!

  • sunshine99
    sunshine99 Member Posts: 2,483

    This is all great news! I know that after I stretch, I'm a little less sore. I'll see my PT friend (more like a daughter-in-law) in a few weeks, but maybe in the meantime, I can start on-going PT. I had a really good experience with it when I injured my neck. We'll see what my MO says when I see her on Wednesday.

  • LowcountryGirl
    LowcountryGirl Member Posts: 26

    thanks for the stretches serenity. I just did them. Horrible low back and hip pain. Got called back for a biopsy next week after a suspicious mri and ultrasound in the other breast and so now every ache and pain is cancer in my mind. Ugh

  • moderators
    moderators Posts: 7,691

    LowcountryGirl, we are sending you hugs and strength. Please keep us posted!! Medicating

  • sunshine99
    sunshine99 Member Posts: 2,483

    Low Country, I'm so sorry for your pain. I think we all, or at least most of us, know what it's like to assume a pain is cancer. I had a sharp sudden pain a few days ago. I can't even remember where it was right now. Maybe in my hand. Had that thought - CANCER! Ugh is right. It's fine right now, Have also dealt with hip and back pain that keep me from sleeping. Hopefully you will get some answers after your biopsy next (I guess it's "this" week now) week.

    Hugs to you...

  • LowcountryGirl
    LowcountryGirl Member Posts: 26

    thanks sunshine99 and mods. The oncologist wants to see me Tuesday and the biopsy is Wednesday. I suspect the oncologist already has her own opinion so I’m on pins and needles. I will report back

  • dtad
    dtad Member Posts: 771

    SondraF...so sorry you are in pain. It might be neuropathy pain from the chemo. I know the hip is not a common place but it is possible. You might want to ask your doc about Neurontin. It might be worth a try if all else fails. I have chronic pain and I know it no joke to live that way. Good luck and keep us posted

  • SerenitySTAT
    SerenitySTAT Member Posts: 3,534

    LowCountry - Hope you get good news from your biopsy. I don't know what you've tried to resolve your back and hip pain. It took years for mine to get to where I no longer take meds for it. I had multiple scans, different types of PT, and multiple meds (Lyrica, anti inflammatory, and muscle relaxant). Hope you and others can be pain free much sooner.

  • LowcountryGirl
    LowcountryGirl Member Posts: 26

    Biopsy Back. Benign Papilloma. I'll take it!

    The onco still wants it out of there so a lumpectomy is forthcoming. I've been second guessing myself for three years for not getting a mastectomy the first time around. Wondering if I should do it now. I understand it doesn't improve my chances but it might reduce my stress.

  • SerenitySTAT
    SerenitySTAT Member Posts: 3,534

    ThumbsUp

  • HeartShapedBox
    HeartShapedBox Member Posts: 117

    Lowcountry, benign! YES!! That's such good news!

    Obviously this is an opportinity for a redo (to mastectomy) IF you choose. Only YOU know what the right choice is. What would be the bigger trauma; the loss of your natural breast, (with or without reconstruction), or the maybe potential of a recurrence that you could've prevented? Only you can decide. I don't see radiation in your stats- I'm assuming you DID get rads since you had a lumpectomy? If you didn't, I might "vote" that a mastectomy wouldn't be a bad idea, if you could live with it.

  • LowcountryGirl
    LowcountryGirl Member Posts: 26

    Heartshaped thanks. My stats were not complete and I'm working on that now. Breast cancer was in the right breast and I had lumpectomy, Chemo and 30 rounds of radiation on the right breast. Now on arimidex.

    This new visitor is in the left breast. I am meeting with the surgical onco next week to discuss options. I think the mastectomy thought was more traumatic at initial diagnosis three years ago. Now, I'm like "get these things off me".