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Fibromyalgia and Narcolepsy a result form Chemo?

Debbie Lou
Posts: 14
Joined: Nov 2009

Has anyone been diagnosed with fibromyalgia or narcolepsy? Im a 15 year Hodgkins Lymphoma surivior and have had several issues like everyone else on here. Ive been diagnosed with Mitral Valve Prolapse, Bicuspid Aortic Valve, Restless Leg, IBS, PLMD, Raynaud's, Severe vitiamin D difencey and a Protein S defencey ( a blood clotting issue where blood wants to clot too much)Fibromyalgia, and recently Narcolepsy and ADHD which goes along with Narcolepsy and also had a hystrectomy at age 36 which I know that was from the chemo. I was wondering if anyone out there has been diagnosed with any of these things and if you have what type of treatment did you have? I am just trying to make sense of these things. I was also told that I will have osteoprosis later in life. Has anyone been told that one too? I thank you in advance for any info you can share with me.

Skrane
Posts: 19
Joined: May 2010

Hi, I am a 1 year survivor and counting of Ewing's sarcoma and so far I've been diagnosed with avascular necrosis, vitamin D, C, and calcium deficiency along with possible osteoporosis. I have had chemo and radiation.
Hope this helps.

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

I was diagnosed with fibromyalgia and osteoarthritis and both they feel are from my past treatments. Fibromyalgia and nerve damage go hand in hand and neuropathy can also be a late effect from cancer treatment.

There is a Dr. Oeffinger who runs a late effect clinic in the states who has alot of background in late effects. Just google his name and all the information you will need will come up.

If you can find a late effects clinic near you you will get all the validation you need as to what things you have been diagnosed with could well be due to your past treatments and what are probably not related.

I had severe heart damage as well from certain chemo drugs, chronic fatigue, neuropathy, edema, chronic pain, hair loss, chroinc infections, anxiety disorder, aspects of PTSD, the fun just never ends. lol.

There are nerve conduction tests you can have to check to see if you have neuropathy or muscle damage and many other tests to check for other possible side effects of treatments but best to start with a good late effects clinic like Dr. Oeffingers or the Lance Armstrong Late Effects Clinic at Dana Farber. That clinic deals with late effects in adults treated as adults for cancer rather than late effects in those diagnosed and treated as children, those late effects can be quite different in severity as children are still growing when hit with the harsh chemos and rads.

All the best and just know that you aren't alone and you aren't crazy. Late effects do exist and sites like this allow us all to come together to discuss them all. The best words I have ever heard came from my rheumatologist's lips when I was called in for results on all the tests she ran on every square inch of me and the first words out of her mouth were 'Well you definitely aren't crazy. You have a whack load of medical issues'. Validation at last.

Blessings, Bluerose

katie.bug's picture
katie.bug
Posts: 14
Joined: May 2010

bluerose

I was wondering, you mentioned you have aspects of PTSD..can you explain that more? Cuz it sounds like something I might be going through but I thought it was just me.

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

Periodically I see a psychologist who specializes in traumas and anxieties and of course then one of his specialties is PTSD. I asked him directly if I had PTSD clinically and he said 'you have aspects of PTSD' which means that I have some of the symptoms of PTSD like a pretty wicked startle response (meaning I jump easily at unexpected motions or sounds, also I have flashbacks of several trauma scenes swimming around in my head that can upset my functioning sometimes. I don't know what all the symptoms of PTSD are exactly but my guess is I have more symptoms but for some reason he seems hesitant to put the PTSD label on my condition, no idea why.

If you are wondering about PTSD in regards to your own situation the best thing would be to get a referral to a good psychologist who deals in traumas and anxieties so that you can get to the bottom of what you are experiencing. It could also be an anxiety issue or panic attach situation you have, hard to know unless a professional sees you. Lots of cancer patients go through this kind of issue with trauma and anxiety so best to check and be certain whats going on so that you can receive help sooner rather than later before the issues start controlling your life.

Blessings, Bluerose

24242
Posts: 1417
Joined: Mar 2001

You just cannot imagine how I feel after readying this thread. I was beginning to think that there were so many that really had no dx or help for their symptoms. I have everything you talk about and it took along time to uncover all the disorders and layers of pain.
I have just been back to pain specialist due to new problems and my god the things she talks about now and wouldn't even touch them before. The mind never forgets though we think it has/we have. I have so many problems and if I thought they were gone I was wrong because now having pain and trauma going on again it is bringing the old problems back to haunt me. I am also so glad to have seen her reaction to all the Brain MRI was showing since the medical community has been able to explain away half my problems when in fact my brain is a problem though not cancer. I guess it wasn't the on set of menopause after all.
Tara

dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

I have had FM longer than cancer at least to the best of my knowledge. I've been taking muscle relaxers every night and during the day if I need it for more than 10 years now. It does help. FM is also treated with antidepressants and now Lyrica. Sleep is a critical factor in FM and chronic pain and as soon as I realized how important it was, I changed my lifestyle.

Cancer has brought on the anxiety for me and I do take effexor xr now for the hotflashes that menopause brought on.........cause of that? cancer and chemo/rads. I am only 46 and been doing the menopause thing now for 4 years.

Menopause brought on osteoporosis and I am healing from an insufficiency fracture in my hip where I had the rads for my NHL relapse a couple years ago. My doc gives me reclast to help build up the bones, since I broke it doing "NOTHING" out of the ordinary, just daily activities.

Who knows what else is in my future. I'm taking it a minute at a time sometimes.

Take care,

Beth

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

Long term survivors have a great deal in common down the road with many late effects, not all of course have them but many many many do.

I was diagnosed with fibromyalgia on a second opinion from a second rheumatologist, first one was insane I swear. I had it for years before they finally gave it the name and am struggling with it. Also have osteoarthritis, degenerative disc disease, respiratory issues (lung damage from treatments), heart damage (afib)- now have a pacemaker because of it, thyroid issues, lose potassium after the transplant, tearing, patella femural syndrome, chemo brain, cognitive issues, aspects of ptsd, anxiety issues - but hey other than that, just peachy. lol. Some of those conditions, like the patella femural issue isn't cancer related but almost all of the others probably are. I didn't have any of the issues other than the scoliosis (also not because of the cancer or treatments) before my diagnosis but have the others in spades now. Currently they are investigating two new symptoms WHOOPTY DO that both sound scarey. One is some kidney issue and the other is a thickened uterus lining that shouldn't be thick. Just add it all to the list.

Recently I was in the Canadian site and told a world reknown oncologist in one of the meetings they have there for anyone who cares to join it online, about all of my late effects and he said 'I would like to apologize on behalf of the medical field. Cancer treatments are a relatively young field yet and those side effects unfortunately happened.' Talk about validation. BUT, still have the late effects. In so many ways I keep thinking that long term survivors are like war veterans who come back from the war (cancer is the same after treatments sometimes) and they too have side effects of war - physical issues. They are called 'heros' as many of us are called yet when it comes to taking care of the effects of war they are often ignored or invalidated, much as many of us are. My doctors never admitted or talked about many late effects that today they openly discuss and that's because they have heard the same things over and over from their patients, the same side effects, too many to ignore. Today we are validated far more than before.

For cancer survivors today though they have one thing I didn't have when I was diagnosed over 22 years ago - THE INTERNET. By reading so many posts from survivors like myself I have discovered so many things that I have talked with my docs about and have come a long way in getting the help I need. I now know better what questions to ask the docs and to not take no for any answer. Information is power to us as survivors and let's face it we have lost so much power to this damn disease, we need all the power we can get from educating ourselves and sites like this one sure help to do that for us.

Oh you aren't the only one is right. There is strength and power in numbers and today the long term survivors are living longer and if it can't be cured cancer is becoming more of a chronic disease for many and the medical field can't ignore similar symptoms/late effects any longer.

Keep speaking out and you will help those that follow behind us.

Blessings, Bluerose

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

Well menopause could have complicated it all too or at least been a part of your issues but sounds like it was more about treatments and the cancer perhaps too. When I saw the neurosurgeon about 'chemobrain' he told me that they are in fact seeing more survivors with these memory and cognitive issues and also we have to remember that as we age then of course the brain doesn't have the solid base it once had too so combined with the treatments it is bascially more susceptible to issues earlier than most people who didn't have treatments.

I probably said this already in another thread here but hey thats part of it, repetition. I have given up monitoring myself on this so excuse me if I posted this before. Sigh. lol.

Continue to trust your instincts and seek out docs in fields that are known for their excellent work in areas that you are concerned with. You know your body best and don't let anyone tell you differently - if your gut says something is wrong then go with that. Best to check it out, the alternative isn't smart at all.

All the best,
Bluerose

MrBeck
Posts: 3
Joined: Jul 2010

After 18 months straight of radical chemo I too have ended up with Fibro in my hands... WOW PAINFUL! My doc (fortunately) saw it right off and prescribed lYRICA at 200mg twice a day. Any more than 400 mg a day doesn't help, but the Lyrica has helped me very much. It took about a week-10days before it was full effect, but if I doubt it's doing it's job all I do is stop taking it for a day or two! Try it, I hope it may work for you.

MacGrandma
Posts: 4
Joined: Aug 2011

I am 26 years now free of Stage IV-E Hodgkins Lymphoma.. Mostly all in my chest, neck and underarms. I had Chemo 12 cycles of ABVD alternated with MOPP lasting a year and a half.. No radiation.

Fibro.. if I could only get a diagnosis. I am switching docs again.. 5 years now suffering with.. exhaustion, muscle burning and pain. If I over do push my self I collapse. Chronic Myalgia and sleep disorders. Either not sleeping or sleeping too much.. It has gotten so bad I am literally the blob on the couch.. lucky if I get myself up to eat. Brain Fog hello what was I writing.. did I take my medicine today? Let me check the med holder to see.. Hello I was a nurse working 8-16 hours each day.. averaging 56-64 hours a week.. love my job, physically active, dancing, bowling.. full of life. I now can't work I collapse and sleep for like 18 hours afterward..dancing, bowling forget it.. so sad.. Well you can message me if you have any other questions or just want to share. I went through depression over the changes but have finally accepted this and just work on my day to day..

I just want to say to all those newly going through Chemo.. I wouldn't give up these past 26 years with my children and now grandchildren, my job as a nurse and love with family and friends I have had over all these years.. Chemo is tough but it will be over you you will have a life again. :) I don't know if you can see this link.. my story with cancer... stay positive! If you can't see it message me for a friend request to facebook.com/macgrandma http://www.facebook.com/macgrandma#!/note.php?note_id=403648724181

I always thought it had something to do with the chemo.. Anyway.. I hear ya, make sure you talk to a neurologist that understands the nerves, muscles and brain function.

irishangel32
Posts: 4
Joined: Sep 2011

I have radiation syndrome,fibro,adhd,deppresion,rickets osteoporosis,nueropathy,foot drop,aoretic stenosis,mitrovalve prolapse,pulmanary issues where I stay inside all summer,cannot breath in the hot humidity. Thanks for posting. in 2001 I had hypotension and a siezure and broke my leg,all due to heart failure,prymlin got my pressure back up,so I could stand ect.
I have been given premylin for fatigue and narcolepsy,then concerta and ritalin.
I take 50k units of D a day only person on record with that dosing most people take once a month or once a week.
My treatments chemo and colbolt 5 rads.were in 1980,86, and BMT 1997. I have 31 years out,and I want 25 more.
I am taking Cymbalta 60mg. for pain management,prior to that Daypro 600mg.

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

My fibro in my feet and hands gets so bad I get the thought 'hmm, maybe cutting them off' sometimes, lol. Just kidding of course but it gets that bad.

My rheumatologist and neurologists say that Lyrica could help but I hear the possible side effects of it and YIKES. I need more side effects like a hole in the head. I guess though as they say, if the pain gets bad enough a person will take anything to make it stop and I think I am at the stage where I will wait for that point, God forbid that it gets that bad that is. Pray it won't.

I think it's individual and if a person feels they want to give it a try then go for it. We are already wrecked so what's one more pill eh if it will take away one of our pains or help at least? However I take so many pills and will take them for the duration of my life I have kind of gotten frozen in wanting one more pill. More pain from fibro will unfreeze me though, again hope that it won't happen.

I wish you all the best in your fights with pain and side effects. Remember, YOU ARE NOT THE ONLY ONE in many of your situations and somehow that makes us feel better - emotionally at least.

Take care.

Bluerose

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

You know I have passed this side effect over in the discussion points here but now that I think of it I fall asleep super fast, bang, sometimes in the middle of a show or half way through my prayers and often and it always strikes me as odd when I do that. It's not like I am drifting off to sleep, it's like BOOM and I'm out. I wake up and think - what the heck was that? All my life I have known what drifting off was but it's not like that. Heck, maybe I have had narcolepsy too for a few years now and didn't know it? I always put this crashing out out of nowhere to my morphine kicking in or one of the other drugs I take at night but sure seemed so severe a slip into sleep but I gave it no more thought than that.

I would be interested in knowing how narcolepsy affects you to compare. I only know the affliction in it's dramatic state when someone just falls over out of the blue. Are there more subtle forms? Oh great maybe something else to deal with, joy. lol.

Blessings,

Bluerose

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