Im bitchy, I moan, I groan.....anyway.
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Okay - the name of the gel is Blue Stop. I don't know if it works or I just think it works! It is at night that the pain really gets bad. I am so sorry you are in this kind of pain - if mine continues I am going to a pain clinic - just as soon as I get decent insurance.
Barbe - I'm with you on the dog - I can barely walk from the parking lot to the front door. When I first moved in with my sister (and before she had a deck built with a surrounding fence) I used to walk her dogs a mile or 2 several times a day. Toward the end of my stay with her I could barely walk to the mailbox (at the end of the driveway).
Navy - good to see you! As for the warmer months they just make me sweat - I wish I could bake the pain away - I would move to Florida in a second.
To pain and suckiness - may it rot in hell.
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Kathleen, Navy, Barbe and Connie - some of you have other medical issues that make mine seem silly, but here's an update that may reduce the suckiness!!! As you know, I've seen 4 specialists, had 3 mri's, 6 months of comprehensive blood work and on and on with no answers. Saw my pcp yesterday to again review 'nothing comes back positive' tests. She is hard to get into, but spends an hour with me each time. She reluctantly said I may have adrenal fatigue and might not be absorbing vitamins even tho my blood work says its in my system. My last chemo was in October 2010. I don't have other issues, just feel like s*t all the time, sooo tired, aching muscles, joints, feet, etc. (ok, the back pain, but that's 6 yrs old, and I take low dose pain meds daily) F**ing chemo was f***ing poison to me! It made me soooooooo sick when I had it (8days in hosp). So I went ahead and ordered the 3 online meds. She gave me a B-12 shot and I felt better, not so exhausted. She said I can give myself a shot every week if I want. I'll keep you posted, as this is my last effort. The foot neuropathy put me back on disability, but I'd rather have the use of my FEET!! Hello God, are you listening??? Towel in hand, waiting to toss it~
Navy- what was the pill?
Hugs to all on this bright sunny day-before-my-birthday!
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tnbc...I've also wondered if vitamin deficiency isn't at the root of my problem. I know I don't absorb vitamin D - I essentially take 5oooiu / day in order to maintain my levels between 09 and 14 -which is well below the minimum as it is. It used to be 0.03. My next round, I'm going to try the drops I've read about on other threads-maybe those will allow more to absord.
But, I digress, the pill I was referring to was Femara. I took Arimidex, my blood pressure went up from 80/65 to 180/110. My heartrate went from a resting 80 to a resting 128. Onc didn't think it was the Arimidex, but my pcp and cardio in the practice tested me for Adrenal tumors, thyroid issues, etc. So, we believe it was the Arimidex whether the onc. does or not. I switched to Femara in June of last year...and the fatigue started in October, followed by a steady decline in everything! I've been femara free for 6 weeks now, and I feel better than I have in a long time. My tendonitis has abated considerably, my fatigue has all but disappeared, my mental mood is much better. I still have chronic pain, but even the pain I do have isn't to the point of tears every day. I'd be very interested to see how you do with your latest efforts...I'd love to see you get some relief!
It's lunchtime and I've also go to go online and order my textbooks for next sememster. It's going to start before I know it!
((hugs)) girls...enjoy the rest of the day!
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Boy, this is suckiness! I have gone on two bouts of steroids which usually knocks the pain out of my knee. A very long time ago I had a virus and when it subsided I didn't think my feet would support me. I went round and round with doctors who kept asking me if the places were red and warm to the touch. No! It moved from shoulder to knee to back. they finally called it 'migrating arthritis' - I think I could have come up with that one. I went to see a rheumatologist who said it was from the virus and it was not in my joints but in my connective tissues. Off and on I have had bouts of this pain that is so crippling I can't move whichever extremity it is. My personal opinion is that the virus never died - just hung out and strikes at will.
Now I have a 'bone on bone' problem with my left hip and for some reason my right shoulder is as sore as the left following the shoulder replacement. I already have spinal and cervical stenosis so my back hurts if I stand too long - say 10 minutes!
When I finally get on Medicare in November I am going to seriously research this as I am doing less and less because of pain.
Ruth - are you a diabetic? I am and have severe neuropathy in my feet.
Hugs to all - here's hoping for a painless day - ha!
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I got new knee braces recently and as we were in Walmart picking them, I lifted my skirt to try it on and my knees were bright apple red!! We were amazed. I told my DH, 'hey, I can't fake that!'. My back gets so hot sometimes that I can't stand it, I make sure my DH feels it so when he comes to my appointments, he can let them know. I know you're alone now Kathleen, but has your sister seen or felt any of your hot-spots?
Connective tissue arthritis sounds awfully painful!
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Nacy is HAS to be D3 DROPS. That's the only way your body can absorb it properly too. And you should take it with calcium, but I just have it with my cereal and tea in the morning. I take 5,000 u and have no idea what my level is, but when I stop taking them, or forget, my pain is worse.
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Hello, I just wanted to ask you if your doctors have ever entertained the idea that you could have a seronegative disease or Mixed Connective Tissue Disease? Google the terms and see if they fit what you are experiencing.
I hope they can find out what's wrong and treat it.
http://www.mayoclinic.com/health/mixed-connective-tissue-disease/DS00675
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Thanks 2cocks, I'm reasearching it now. Do you have it???
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My Vit D-3 gives me a headache every time I take it. Its a pill with liquid inside, like Vit E. Wouldn't the drops just be the same liquid? Maybe I'll try it with calcium and hope for no headache.
The B12 shot gave me lots and lots of energy for 2 full days...like I was on speed! (well, compared to how I was functioning). I'm achy, probably from too much activity! hahah, but my brain fog is even better!
Barbe-that mixed connective disease thing sounds like what you have...the red knees are what I had when I had rheumatoid arthritis which is one of the things in the 'mix'.
Life is sucking less today~ sending suckless vibes to all....
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at least i feel better, knowing im not alone in the "suckiness" now, ive been dxed with thyroid problems... the dr. that found it was a cdc spec...so OF Course, he won't tx it.. can't find dr. who will onco said no , even though they're sure chemo caused it... one of the things the cdc dr. suggested was reg b12 shots (which i've BEGGED for for 6 mos.) glad it helped YOU..Ruth. Tues. i go to gp who tx me like shit last time i saw him. he'll probably poo poo me, also. but, it'll be a big fight. he'll either do the tests, or throw me out of his office. 1st time, i measured HYPO thyroid, next time HYPER,,, so, they think its' graves disease, brought on by chemo.. i totally have no energy; sleep till noon ; and then 9PM wide awake, and moving!!! we'll see what he says tues.. im about ready to shoot some Dr... but they have no health coverage in jail here in
Fla, so i gotta be a good girl!hahaha.....3jays0 -
barbe, I have Psoriasis and I have arthritis in my spine. I believe that the doctors have not diagnosed me with Psoriatic Arthritis because I have a negative ANA; but you can have a negative ANA and rheumatoid factor (RF) with Psoriatic Arthritis.
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3jays: Hold on there Annie Oakley. Don't make me have to come over and bail you out of jail.
I'll be thinking of you this week and hoping for some real answers. Hugs. 0 -
thanks gyrlfriend..im really ok even a night in jail is too long, these days..lol 3jays
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Hi ! 3 jays ! no nice to see you in this thread. How is your health now? For me these days I am having some problem on my joints. This happens only after discontinuation of arimidex. 4th July is my follow up check up date. need to discuss with my doc about the problem....
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3jaysmom ... I hope you are feeling somewhat better today. I know about doctors who think you are just a "complainer" and want to be tested for everything. That's not me by a long shot - I try to avoid doctors at all costs until my health went rapidly downhill starting with breast cancer. My PCP just said "ummmm" to any symptoms. I have accepted this pain as signs of wear and tear on my body but now the pain is interfering with my daily life! And if there is something out there that will help alleviate the pain then I want it!
I looked up both of those medical conditions and I couldn't tell if I had them or not. Besides, the treatment is stuff I have already tried - steroids, Advil, etc. Isn't helping. Boy, pain wears you down, doesn't it?
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Hey Barbe ... what is the best pharmacy in Canada where I am positive the drugs were made in Canada and not just shipped in from a third-world country? Once I go on medicare, given my prescriptions and their cost in this country, I will be in the 'donut-hole' in 4 months! So beginning in November I will be ordering my drugs from your neck of the woods.
Thanks.
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3j'S YOU CRACK ME UP! But wasn't there a man recently that robbed a bank of $1 so he could go to jail and get health care? Wasn't that in Fl? anyway, don't back down!!! You can do it!
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Kathleen- no, I don't have diabetes. Just feel like the bottoms of my feet have been pounded with hammers. I keep hearing how I look sooooo healthy. Its so hard to smile and say thanks when its torture just to be standing. Oh my foster dog just threw up everything...1,2,3x plus her worm pill. gotta run~
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Yah well, my cat puked at the foot of my bed last night! Had DH clean it up while I held it off the mattress so it wouldn't stain/smell it. Then the cat jumped back up and was quite annoyed I'd only bunched up the stained part and not remade the whole bed!!!!
Kathleen I have no idea where my drugs are made. I just suck it up and take them. I do know that Canada is a lot stricter for all imports than the US is, so you probably are better getting drugs from up here. I'd try a Shopper's Drug Mart, Rexall, but not Walmart or a generic online 'store'.
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That Sux to all those going through this crap continuously....so sorry any of us has had to, but the lingering BS is just that....BS and 1) we should be heard and acknowledged when we voice a concern and 2) they should help us to find a way around the pain, or through or what ever and not keep putting us off
I read the updates daily/weekly though email from this post, but haven't responding in many changes of moons, but had to offer a possible help to those feeling joint/muscle and or plain ol' bone pain from effects of our tx/meds both current and past.
I'm 3 years, nearly 4 out and still suffering from bone/joint/muscle aches I believe are part of a vicious cycle b/c I hurt enough to not push that envelope for fear of further injury, and not using the pieces and parts of my skeleton, I'm sure has caused even further problems...
Anywho...long story a little shorter in sufficing it to say, that I have a pill that was prescribed for heal pain from Plantar Fascitis (who knows if it's tx/med related, but...) Lodine was prescribed for help in the inflamation of my feet while doing tx and after.....a side effect is that it has also slightly affected the pain I get at night while at rest/sleeping...my poditriatrist claims it's something his mother uses for arthritis, but he prescribes for foot pain too. While it doesn't cure, it does allow me stand on my feet for the 10 hours I work.
Just hoping perhaps it might help someone on here to have a little bit of repreive from the pain that seems a normal part of some of our lives??? Hope is eternal hey?
Try it if you can...
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Just found this blog and I have to say it is the best laugh I've had in a long time. I was just thinking this morning how I wanted to just tell someone how much this sucks!! I was telling my husband yesterday (after a family party) how funny it is when everyone tells you how "great" you look, when you're standing there bald ( with a wig on) and missing a body part. Gee, looks can sure be deceiving. Either that or they are lying.
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Well, it does beat the alternative, of having them tell us how we really look some days, right?
I think for most, it's just easier on them to say we look good, b/c then they won't hear hopefully (in their minds) how we are really doing...most can't/ couldn't handle the truth. Or sometimes, I think they are speaking before thinking aloud, that they'd never have thought we'd look as good as we do doing tx....as you say...it's fairly easy to hide the baldness, the aches and the emotional turmoil going on inside us.0 -
Lodine - my PT just suggested I try it, as I can't afford Celebrex anymore at $60 a month. Lodine has been around long enough it should be cheaper. I just have to call my dr and persuade her to RX me. Glad to hear from someone else using it. I've been in PT almost continually for the past 15 months - one thing after another. Finally getting a handle on it, but with connective tissue disorder I can dislocate something or tear or sprain something at the drop of a hat. So I need meds, usually. I'm not even doing any treatment - no chemo, tamox or others. Just my usual bad health.
As for everyone telling us how great we look, I think there are two factors there - they both expect us to look like death and we don't, and we don't look quite right, either, so they are telling us the truth - (better than death) and lying to us (we don't look right).
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I think its Encouragement they are trying to convey. Like when your child falls and you look at the skinned knee and say, 'its ok, run go play'.
I took so many pills last night that I wasn't hungry before bed as usual. Woo hoo But then I was so worked up, I had to take 2 1/2 ativan. THIS HAS TO GET BETTER!!
Wish- we need to organzie a post chemo para-med group like they have for lymphedema. And get paid for the service!! Tooooo much suffering. And cuss words.
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i am almost three weeks out from surgery and have people just now stopping by and they seem confused and almost upset that i look so 'perky' (as they phrase it) - almost makes me feel like i need to look bad for them... lol.. oh well... it is what it is.
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I am going to see the doctor tomorrow afternoon. I'm going to ask about Lodine or stronger pain killers. I am hobbling to just transport myself from bed to bathroom. Here is the current litany of pains - my right hand hurts so much I can't make a fist; my right elbow is killing me, my right shoulder is very painful, my left forefinger is swollen, my left wrist hurts and, of course my left shoulder hurts from the shoulder replacement. My neck and head hurt. And that's just above the waist!
I don't know what you say to "you look great." I am tempted to say - what, did I look like shit before?"
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Kathleen, I remember at one point, mumbling the same thing to someone...about 'How bad did I look, Pre-BC?' Seems our experience and feelings are all very similar.
V- Yes....Had my surgery on surgery on Thurs 11:30 am or so, and was released Friday 9:30am. Sunday morning I was vacuuming for company...my first of many mistakes...great pain killers helped to hide a lot and also caused a lot of miscommunication of how things really were. Hopefully none of those who mis-understood was really felt will never have to travel that road...and truely understand what was happening with us.
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Those same people are the last to want to know how you really feel. I find that most folks aren't all that interested in other people's problems. "How are you" is usually a rhetoric question!
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Let me give you my comeback yet again:
You look so good!
I had cancer in my breast, not my face!
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Yes, I have figured out that most people don't really want to hear the bad details. That would make them feel that they had to do something. There are a lot of good people that would listen or do for us, but I really don't want to let just anyone in on that level. There are a few trusted and valued friends that can really know how we feel and are there for us when we need them. Thank goodness they can understand and listen to the days of crying and the good days.
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