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Have any of you long term survivors developed painful spots on your legs/hips?

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

I was diagnosed with fibromyalgia awhile ago but this painful spot thing is new and more painful than the overall fibro. I have two spots like this on my right leg and one especially up on the outer side of my hip that took me to the ER recently. It's not in the bone it seems to be in the flesh. It' so painful it makes my eyes feel like they are going to bug out and roll across the floor at any minute.

The pain is like 10 bad bruises on top of each other and it can stay for a day or two then disappear then reappear later.

Anyone have this or know of anyone who does?

Thanks.

Blessing,

Bluerose

Marcia527's picture
Marcia527
Posts: 2731
Joined: Jul 2006

I have not had anything like that. I've had trouble with cellulitis on my legs but that needed antibiotics.

I've had trouble with a pain in the hip but took glucosmine chondroitin and it went away.

I'm having back aches now but only painful when I get up in the morning.

My lower legs and feet tingle some. But nothing like what you are describing.

The doctor can't tell you anything? Maybe the Mayo Clinic? Hope you find relief soon.

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

What else is new. lol. That's okay it's complicated and as usual I will stay on the trail til I figure this out.

This pain is just unreal and very unusual which is what usually leads me to a link with cancer treatment as the cause. I have nerve damage all over the place with the tingling feet thingy and lower legs as well at times, numbness - typical neuropathies caused by a bunch of chemo drugs that are now infamous for this kind of side effect but this type of pain is different from all of that.

I pressed with it as I wound up in the ER with one spot that was insanely painful and the ER doc said it was in the wrong place on my leg for a clot (whew) but that it could be a necrosis (yikes) or a nerve issue. Anywho I left with nothing but zombie painkiller scripts I didn't fill. I got an appointment with a good neurologist in the city here where I live and that is scheduled for 2 weeks from now and I have a gut feeling she is going to figure it out. I am pretty sure this is a worsening stage in my fibromyalgia if not yet another totally different side effect but I know that it is connected to neuropathy as well in some way. It sort of feels like a fat issue in that the bruise is so within the fleshy/fatty part of my mid thigh.

I can't have mammograms anymore either due to intense pain and so had to fight for ultrasounds of my breasts instead as the only monitoring tool I can handle. That was a fight that took me to another province and back. It's amazing what we have to fight for isn't it? Anywho I won and can now have breast screening like everyone else but that issue is a definite side effect from cancer treatments they tell me. I was treated many years ago so some treatments were much harsher than todays and not recognized for the side effects in the distant future, who knew I would survivr this long? Fooled you. lol.

Anywho I am hot on the trail for an answer to this and just wondered if any other long term survivors with similar histories had experienced any of this spot pain.

Blessings,

Bluerose

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

Not to be of offense to anyone, which means I almost certainly will be, but someone in here at some time asked a funny question that continues to resonate with me: how much are we blaming on cancer that is really just getting old?

To extend that in a feeble effort to save myself from the wrath of elderly women everywhere: how do you know?

Take care,

Joe

Marcia527's picture
Marcia527
Posts: 2731
Joined: Jul 2006

Well, I have found that the older I get the younger those old people appear.

I might look elderly to teenagers but those teens are looking like babies to me.

Does that make me old? I don't know but where'd I put my cane? I don't need it, it's just a fashion statement. I don't really need the reading glasses either. Just because my kids are middle age...maybe I am old!

You crack me up Joe! "The wrath of elderly women." What about men?

But how DO you know. We don't. Unless we get a new mattress and my backache goes away. But I'm not trying to place blame just find solutions. As I'm sure Blue Rose is too.

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

If we give up trying to help ourselves by not trying to find solutions to our aches and pains then we are truly lost. At least that is how it is for me. I have had to work an fight hard to find fixes for myself and not doubt there will be, and have been, no answers for some things, at least not for awhile.

When I look back on my journey with cancer that started over 20 years ago I remember experiencing all kinds of new medical issues that I had never had before and it was too weird that they all seemed to come on after treatments had started. You had to wonder. I remember thinking about the possibility of Post Traumatic Stress Disorder for cancer survivors/patients and that was poo pooed by most doctors at that time but I just knew that it was a fact and today there are huge studies and validations for that issue and that's just one. Same thing with heart arythmias from cancer drugs, I reported that as I felt my arythmias were linked to the medications - hello the arythmias started right after my first chemo treatments. Coincidence? I think not. Turns out today certain drugs are now known to produce heart issues.

If it weren't for patients monitoring their own bodies, instincts playing a big role in it all too, and just huge 'coincidences' between treatments and bodily symptoms where would we all be in the cancer journey today? We know our bodies best and we have to speak up with where we feel it's all coming from, right or wrong. I think patients KNOW when something is wrong and where this something is coming from. I am a firm believer in that.

Take good care Marcia

Bluerose

Marcia527's picture
Marcia527
Posts: 2731
Joined: Jul 2006

I'm starting to associate my self image with my mom when she was old. I told someone the other week that we all are turning into our parents. This really scares me. %>O So I'm going out of my way to be different. As I break out in song-I've got to be me!!! Uh Oh! my mom was the singer! NOT ME! Diabolical latent tendencies anyway!

Marcia527's picture
Marcia527
Posts: 2731
Joined: Jul 2006

I told my DH what I wrote here and he said if I'm that old I shouldn't cook tonight!

thinking...thinking

I've decided I'll be old if I don't have to cook. hee hee hee.

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

Many times, in answer to your question about how do we know what pains or other medical issues are a result of cancer treatments or the cancer itself, we don't know for sure. All that we can do is go with the knowledge that we have about our own body and how pain has affected us and what kind of pain, new pain and compare it to others who have had
similar pains and treatments before plus our own research on the topic itself.

Alot of the cancer journey is one big guess, not only to survivors but doctors too so all we can do is ask the questions and come up with educated answers that might well work for us and others. We hope.

I know my body and I know what I have heard from other similar survivors and come to my own conclusions with what makes sense to me, with the help of my doctors and sometimes without them, lol. With many medical issues I never had prior to treatments, plus their severity for the most part, I need to continue to search for reasons and hopefully eventual fixes.

Take care Joe.

Bluerose

Hondo's picture
Hondo
Posts: 5608
Joined: Apr 2009

I have this problem on the side of my head, very bad pain. I have seen all the doctors at MD Anderson and none of them can tell me why they just call it Radiation side affects. It is not always there, but when it is it lets me know. I learned to live with it by taking some pain pills and using a warm bean bag to rap my heard at night.

Please let me know if you find out anything on this as I don’t want to live on pain pills the rest of my life.

Thanks
Hondo

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

Do you only have that kind of pain in the one place, on your head? Mine are on my legs only, have 3 of the spots now. Does your pain feel very centralized and like 10 bad bruises one on top of the other?

I find when I sit for long periods the spots are worse, especially the one on my upper thigh as it is compressed when I sit.

When I went to the ER with this pain, it was that intense, the doc said it could be 'fat necrosis' okay that sounds gross. Doesn't necrosis mean 'death' so they are saying the tissue is dying there? Yikes. I am seeing a neurologist in a couple of months and she will figure this out. I am also wondering if it's part of fibromyalgia - nerve damage - all related I think.

I will let you know if I find anything out.

All the best,
Bluerose

Hondo's picture
Hondo
Posts: 5608
Joined: Apr 2009

I have 4 areas in my body that I have pain and no doctor can answer me why. The one is like I said on the left side of the head about the temple area. Two others are right about the abdomen area one on the left and one on the right side. Feels like it is under the rib sometimes and hurts like hell to where I could scream. The last one is one my left side a little above the heart, and it too hurts like hell and makes me feel sick and weak. I had the heart checked many of times and there is nothing wrong with it. But still no one can explain to me why the pain. That is what made your Post so interesting to me.

My Pain does go away sometimes for weeks, and then right when I don’t need it here it comes again for a visit. The doctors do have me take Tramadol HCL for it, but that does not phase it sometimes. And yes I do have a lot of nerve damage from the Chemo and Rad, darm side affects

I am glad in Heaven there will be no pain.
Hondo

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

Something is ringing a bell about the fact that your pain is on the left side and the right site and thanks to chemo brain I can't remember what health problem that's common wiht. I am thinking it is either fibromyalgia or lupus but it could be another health issue that has totally slipped my mind. I think it's fibromyalgia. I was diagnosed with fibro a few years back and these spots could be that issue just worsening. Do your pain spots feel like bad bad bad bruises or something else?

Google pain on both sides of body at the same place and see what comes up. Stupid chemo brain, can't remember anything anymore but for sure that is a symptom of an illness that
causes pain - pain in the same spot on the body but on both sides.

If I get any news on my pain spots I will let you know. I would appreciate hearing from you if you get any input from the medical field on it. I know, I won't hold my breath either. lol

Hugs,

Bluerose

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

Hondo did you have Hodgkins? If you did apparently I read that it's common for those in later years to develope shingles. Look into shingles because if you read about it it talks about pain like we have. Also arthritis produces pain on both sides of the body but it's more in the joints with it I beleive. Also Lupus is sited as having equal both sides type of pain in the body. It's got to be one of those things. Fibromyalgia also produces that kind of pain. I am going to look into shingles more myself although typically a rash is seen with shingles and that is the only thing I don't have - yet. lol. Talk to you doc about these things. My guess is you will figure it out before he does.

Let me know k?

Bluerose

Hondo's picture
Hondo
Posts: 5608
Joined: Apr 2009

Thanks for the info; I believe I will look into this as I do have a rash also just above my hip on my left side. I tried to get rid of it may times but it just keeps coming back, it is not big just a little spot that will not go away.

Thanks again for all your help
Hondo

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

Oh ya, if you have a rash on top of it then definitely look into it and mention the three issues that can produce painful spots that I brought up in my post here. Sometimes you need to drop possibilities but trust me, don't say you researched the internet cause most doctors then look at you as if you are trying to diagnose yourself which of course we are because THEY ARE TOO SLOW. lol. Just kidding, kind of. lol. When you said the rash keeps coming back and WON'T GO AWAY that's when you know you have to do something about it. Simple rashes will disappear you would think but a symptom of something bigger won't. Be bold and tell them you want to be tested for lupus and the other things I mentioned, I don't know what the testing process is for each, you might want to look that up on The Mayo Clinic site so you know what to ask for or check that they are doing all the right tests for each issue. Shingles and lupus plus fibromyalgia and arthritis.

Let me know how it goes. I know too that sometimes key symptoms like rash or sores are common for some of the issues I mentioned but sometimes they aren't present and still the
disease is diagnosed - just takes longer without the more often seen symptoms. I have found that personally and seen others say the same, sometimes we long term survivors don't present like others do who haven't had all the treatments we have had so sometimes symptoms are different for us or key ones don't appear.

All the best with your search, do let me know.

Hugs,

Bluerose

Hondo's picture
Hondo
Posts: 5608
Joined: Apr 2009

Most of my doctors know me by now and know that when I come to visit if I have a problem I normally tell then the problem and what I want them to do. My old oncl doc here in Lafayette would hate it because he wanted me back on Chemo 5 years ago because of an area on the PET that would light up. But when he would scope he could see anything, so I told him NO. About 2 years ago I was having a lot of problems with my teeth but the problem is I can’t open my jaw but ½ inch, so no dentist can work on my teeth. I asked my oncl doctor why he did not get me therapy during treatment to keep my Jaw open. He said because I did not expect you to survive more than a few years at the most. All I could tell him was, its hell when you are wrong, I now go to MD Anderson.

Hay thanks again for the help and advice, I will give you and up-date
Hondo

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

I had an issue with my jaw not opening wide enough and still do, it's not like it used to be at all. I had some dentistry about 8 years ago and the dentist had my jaw opened wide too long and I think it was weak anyway and that extra stress did damage but if it wasn't weakened by treatments (the bone) I don't think I would have the issue. I too have developed teeth issues, 3 have just sort of fallen apart in a relatively short time and I have had to have extractions and all kinds of fun stuff. I have such a fear of invasive treatments like teeth pulled that I have to have conscious sedation which of course drives the costs up. But if I didn't get knocked out for the surgery I wouldn't ever do it so pick your poison eh? lol.

All the best and glad to hear that you have new docs that will listen to you.

Take care.

Bluerose

CH
Posts: 4
Joined: Jun 2011

To some degree you may have a point about assigning too much pain to being a cancer survior as opposed to old age.  I think it is relative perhaps to how long out you are in your survival experience.  I am 47 and as a child had severe amounts of chemo and radiation.   Over 2 decades this exporsure required operations to repair spinal damage and intestinal disintigration...but I am still here!  It never held me back.  In my youth I snow skied, ran track...etc.  Now pushing 50 for awhile I had a painful hip where raidation had struck.  (That's also where my non-cancer track mates also hurt now by the way).   My first thought was a tumor (that paranoia can be a curse and a blessing)...after a few months it went away...and I suspect will probalby come back in my 60s (like it does with most 60 year olds.)   My point is, if you are in treatment, a few years out of treatment, etc.  it is natural (and likely frankly) that it could be related to cancer and should be investigated.  If you are decades out it should be check out too...but not because you had cancer...because it would be prudent for anybody getting older to look into pain.   Pain is there to tell you to do or not do some activity.  That is true whether you had cancer or not.   Just hoping to give a little bit of surrentity, rationality, and peace.   Remember, after-all, life is a terminal illness and one day we all die...perhaps just not today.

lamata60
Posts: 3
Joined: Sep 2013

i get the same thing. have been diagnosed with deep muscle spasms caused by nerve damage. nerve blocks and ketimine gel help.

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