anyone out there with auto-immune/chronic pain issues before dx?
Comments
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Barb,
Therein lies the difference between taking meds for pain, and those who take meds for recreation. When the source of the pain has been identified, and hopefully corrected, you don't need the pain meds! Most most likely would need to taper, as the body gets used to narcotics by creating more receptors for them, but that's a world away from recreational use. I've had many an epidural, and am going back in for PT before any sacro-iliac injections. Those are rough on me, and I have to have twilight anesthesia due to the screaming. I once chewed a piece of gum in the AM, 5 hours before an injection where I was going to be sedated. Well, that was a baaaad idea, b/c I guess I was coughing/choking, so they had to lighten my sedation significantly. Then came the screaming....from me. You should have seen the look of terror on those waiting for the injections. I remember them saying "she's scaring everyone back there." Pain sucks.
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Hi,
I've had chronic fatigue syndrome since I was a little girl. I asked my onco if there was any correlation or if the information could be recorded for study and he said that it was not something that was going to be studied or collected as data over time.
I think that's too bad in a way. Now my chronic fatigue is 100 times worse. I don't have the energy to keep house much less take the dog for a walk or do an hour on the elliptical. I feel like I am half dead. This is not a happy place...the other day I googled..."life sucks." I am in a bad way right now. I use 1 Xanax to get to sleep but I think it must contribute to this feeling. I am NED but I feel like I am a shadow of my former self. My sister says I don't laugh or smile anymore.
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I see a pain specialist for a chronic pain condition (congenital vein abnormality in my vulva, of all places) I take oxycodone 10 mg twice a day; and upped it to 3 times a day after my PBM 2 wks ago. I do feel guilty about taking narcotics; esp when I'm about to run out and I cut down and begin to feel withdrawal symptoms. and I know that the amt of oxycodone I've been taking is high for 2 wks post-mastectomy- I have developed tolerance. But my pain specialist is not elvis presley's old doctor. He sees the cause of my pain. Taking oxycodone enables me to enjoy more activity and for more hrs of the day. I am cutting down from 30/day to 25 then 20. As you can tell, I obsess a bit on this topic. I used to work in drug rehab as a nurse clinician; and there were many people who were admitted due to prescription drug abuse. I always disagreed that they had to announce themselves in mtgs with "I am a drug addict" they were people in pain who had developed tolerance to narcotic pain meds. And that was yrs b/f I was on oxycodone. I did not agree with the principle that "a drug addict is a drug addict". these people were innocent victims of pharmacology IMHO. They needed clinical supervision for detox. sometimes the cause of the pain had been cured (hoorah!) but these pts were left with a drug dependency.
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Next Tuesday's election here in Arizona has medical marijuana on the ballot. Probably won't pass but if it did I might seriously consider taking it. (Not a smoker so I'd have to have it in brownie form or something!) Anyone admit to trying it and did it help with your pain levels? I have yet to find any prescription med that worked on mine unless it was such a high dose that I extremely nauseous and practically comatose.
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Eileen, I agree that chronic pain patients shouldn't be stigmatized for using the drugs prescribed for pain relief! This society has such a conflicted relationship to drugs, legal or otherwise- first prescribing (and maybe not in our cases, but often over prescribing rather than treating causes) then pointing fingers when people take them! You should not feel guilty- you are aware of the risks and making every effort to control your pain but keep any dependency under control.
Kate- I live in calif, and have tried topical marijuana oil a little. It's helps a very very small amount. I just can't stand the effects of actually injesting though, so it doesn't work for me. One of the reasons I can't deal with it is because it makes me sort of hypersensitive, which is just awful feeling and something I dislike asmuch as pain in a way. But not everyone has this problem, so...try it! I wish it worked for me- it's so much easier on the system.
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jessamine- could you explain more what you mean about being hypersensitive in regards to the oil? Just curious.
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Kate- not the oil, which i sometimes use because it doesn't have any of the psycho-active effects (getting stoned!), but actually smoking or eating it- it makes me really hyper sensitive. Like I can feel my skin more and notice every little thing. Ugh. The main effect of the fibro, for me, is to make me incredibly 'princess and the pea'-like anyway, about everything, so this is just awful. BUT!! Lots of people don't experience this at all. It's not uncommon, but it's totally not everyone. SO don't be scared off trying it out- some people find it very soothing, or it wouldn't be so popular!
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I`ve smoked pot here in Canada and I, too get too sensitive to the pain. It`s like when I used to drink...I was actually in more pain as my muscles finally began to relax and then the bones hurt! I am totally bunged up from the narcotics, even with nightly senna laxative and stool softeners. Had to have a Fleet enema today as well as take a prescription lactulose or something like that. Still not even near 'empty', but working on it. The pain pushing against my bulging disk was enough to almost make me black out. They were very nice at the hospital; treated me very gently. I was sobbing as they lay me flat for an x-ray....poor me!
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oh I'm so sorry.
I think the stopping up was about the worst part of chemo for me- I went through tubs of miralax. Such an awful feeling. I hope they can, ah, clear it up. -
I wonder if medical maraijuana is carcinogenic? I always heard it was way more cancer-causing than tobacco.
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Eileen, you don't tend to smoke as much marijuana as cigarettes. The fact there is no filter is an issue as well as what the wrap paper is made up of when you roll the joint. Some people mix regular tobacco in a joint to make it less strong. So, if you're really worried, bake the pot in brownies!
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thanks. i think I'm the only person who went to college in the 70's and never smoked pot. Liked my beer but I was a commuter so I could not have much. Just never appealed to me to smoke anything. thanks for the info. eileen
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eileen- I'm a pot virgin, too. I was married by 20, working two jobs, with no time for fun! I have to say I am curious whether the pot would help or not. I find it so absurd that people have to walk around in chronic pain when there are options out there. Medical marijuana was on the ballot here in Arizona but didn't pass. I think it was something like 52% against and 48% for so it was close.
My GP just put me on Lyrica again. We're going to try it at a higher dose. Has anyone had good luck with it for pain?
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I'm finding better pain results with Cymbalta twice a day and 5,000 iu of Vit D3 a day. It's helped but now my knees are killing me! Told my DH that I don't know if they hurt before as my hips and back were so bad I couldn't tell...hehehehehe
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barbe- It's funny that you said that about the Vitamin D. I was taking it religiously for months and then kind of got out of the habit. And that was right around the time my fibro started getting bad again. I'm going to go back on it and see if it makes any difference for me. The Lyrica isn't helping with the pain so far but it is helping me sleep better so I'm happy about that!
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Kate, I'm sleeping better on the Vit D too!!! You make me realize that. It was someone else that reminded me to get back on the D and I'm so glad I did. We may have a "cure" for FM here!!! I only wish....sigh....
I'm seeing a very, very important rheumatologist tomorrow (Friday) and am VERY interested to see what they come up with. Over 10 years ago I was told by another head rheumi that I was grossly undertreated. Then he talked to my PCP who thought I was just looking for pain meds and refused to treat me. So it's been over 10 years since I've been assessed properly.
Please pray that they can help me and I'll come and share my secrets!
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I posted on this thread once and lost it. I can so relate to the pain issues. I have AS(anklosing spondolysis) along with a bulging disk, a fissure in the disk above (losing fluid) and bone spurs up and down my spine and hips from the AS. I am in constant pain and because I "suck it up" it's hard for the doctors to really understand how bad it truly is. I had a complete breakdown for the first time about a month ago in the doctors office and I think that was the first time he had seen me "lose it". He did help me, but I really need to figure out a steady medication not the every now and then medication, shots and facet blocks. I am currently taking Vit D3, Calicum, Fosmax, Indomethican, Methotrexate, a muscle relaxer that is new and can't remember the name and Tramadol - still suffer, suffer, suffer. In addition to eating asprin like candy on the bad days. They've tried me on Lyrica and Neurontin, but my legs and ankles swelled up like little ballons (couln't get my shoes on). I know its wrong, but when the pain is there I can't sit, stand, lay down - I am a total wreck. Recently I had one bad night, even took benedryl to try to make me sleepy, didn't work, got up and layed on the floor in the living room, extra bedroom, heating pad on the sofa, ice packs, rolled on the ball trying to stretch the spine and finally at 4am fell asleep - it was awful and I was in tears. I had to follow up that night by going to work the next day - can you imagine? There are days I envision ripping my spine out of my skin..........
Chronic pain is so hard for our friends and family to understand and if someone hasn't suffered with it they really don't understand it. I think doctors also don't know what to do and are so afraid to over prescribe and/or turn patients into addicts that they don't work with the patient in the way that they should.
(((HUGS))) to all of you and my heart goes out to each and everyone of you that is suffering.
Hopefully there will come the day when pain is no longer misunderstood and chronic inflammatory diseases is more understood.
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barbe- Really hope the new doc can help. It ticks me off that, for most of us, it takes a decade to get any kind of definitive diagnosis and some kind of help. Wish they had a blood test for CF, Fibro, etc. so they would know we're not some kind of drug-seeking addict. It just ticks me off. Wish people could just crawl inside our brains for 5 minutes and feel what we feel. Maybe they'd finally get it. Of course they're only getting 5 minutes and we get a lifetime. Really hoping you get some GOOD secrets to share!
jenn3- Glad you found us again! Can so relate to your "middle of the night" story. I think we've all been there. And it always seems so much worse during the night. You feel so alone even if your family is there sleeping nearby. I'm a lot like you in that I suck it up, too, so I don't think people really get how bad it is. I've had some breakdowns, too, where I just can't take it anymore as I'm sure all of us has. That's when I take a "jammie" day and just kind of check out mentally and emotionally. My son calls them "achy days". He knows those are the days that mom doesn't get out of bed. It makes me sad that this is part of his childhood.
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Hi Ladies - It's been a while, but I'm caught up on your posts. No - there is no real good website out there for people like us. I am pursuing it here in Dallas - hope to get something started. There would be a real benefit in having a place to share information. And I mean a site specifically for women with BC who also have autoimmune disease. No one knows the joy of Tamoxifen for a fibro patient! Aye chihuahua!
Tried to take a bone builder for about 10 weeks in the lowest dose available. Had to stop. Caused muscle weakness, poor coordination, and lots of other lovely stuff. When I fell for the first time, I threw in the towel. Would like to stop Tamoxifen, too, and am seriously considering it.
Love and support to each of you. Please stay nearby and post - it really helps to know you ladies and to share information.
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Just had a visit with a Rheumatologist and she was wonderful!!! She said that once I had a diagnosis of breast cancer they should have pursued my back/hip pain until they found out EXACTLY what was causing the pain. She said "we won't go there right now" we'll rule out other stuff first. So, another whirlwind of tests but I feel like I'm in good hands now at a world renowned medical centre in Toronto. Whew! She even said she is checking my Vit D leve!! I didn't even have to ask. Finally, a professional who knows what she's talking about. When we walked in, I clapped my hands and said "OOooh a young brain! The best kind!" She knew I was serious, too.
I told her my next referral would be to Dr. House if she couldn't nail something down...
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Magob- I don't know how you have the energy to start a project like that, but it sounds wonderful! Let us know all about it- I know I'd be interested.
Barbe- if only it was like tv and there was a specialist who would identify all our symptoms and tie them together and identify them as something treatable- all in 45 minutes!
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hi guys, i, too, just found thismthread. i'll give you my list, and its' extensive. ive bought a few Drs. mansions thruthe years. but, i have to tell you, having cancer trumped all of it, ansd many things i've done to hang out with NED, where i am now, was life threatnuing, but had to be done..cause cancer is a dirty beast from HELL, trying to eat our souls.. i for one, refuse to let it... so, i lumber along with all the rest knowing them as complications to my life; never as threatening as the cancer we all keep trying to beat down.
i had asthma as a child, many things they used to treat it, caused further problems, as has been said in this page. i've had incredible allergys, especially to compoinded drugs, sohave face life threatening places many times. I have had Diabetes for 5 yrs, which came about from the sometims by monthly bacterial infections i got..pseudemonis, has been the deadliest. has a picc line for 7 mos the yr before finding b.c...connection?? the most disturbing for me has been Multiple Sclerosis. that has to be a consideration with every tx., every protocol after that..Neulasta kicked it into ovedrive, and suspect ive "graduated" to the worst form now. just can't face reeval right now. where on a no bad news vacation.. oh yeah, and fibromyalgia. are they exclusiveto themselves? i don't think so..many are treated the same way; with steroids, but after chemo; im trying to stay away as much as i can
the point for me, whatever i got, i'm keeping it, none of it is curable. i just have to live carefully. eating better than before b.c., but need to improve there. the rest is just getting up each day, and facing whatever is on the menu for that day..
i thought fibro and MS taught me that; but b.c. banged me over the head with it...every day is a new day, and im darned lucky to be here in it. so let me live it..
that means walkers, wheelchais, whatever the day brings..and a lot of the time, house or bedridden, now. chemo nearly finished me. but NOT YET!! not for this girl..so, i drag myself here, andd here are all the lovely ladies trying to live their lives, also. i never feel alone, anymore. not since finding BC o wishing you all light and love, 3jaysmom
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MAGOB- Glad to see you posting again. Sorry the Tamox is kicking your butt, though. Hope it gets better. Do I remember right that you also have a sister on here?
barbe- Love the young brain comment. Hope the new doc comes up with some answers for you. If not, lets all find a real life "House" and storm his office together!
Well, I just went off the Lyrica today. It was making me sick as a dog- felt dizzy and completely unbalanced (physically that is, not mentally, LOL!). Of course, now I'm back to the insomnia. It's 3:32 here in Phoenix, I've got 16 people coming to our house for dinner tomorrow (or rather tonight) and I haven't slept a wink. I sometimes think I would sell my soul for just one good night's sleep.
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Hi Kate! Yes - you remember correctly. Double D is my sister. She has already gone through her exchange surgery. Can you believe it?! She was so brave.
Hang in there. Those pharmaceuticals are tough monkeys to deal with. The docs love to dole this stuff out, but we get to deal with the SEs. Maybe you will get some relief when the stuff is out of your system. Hope so. I'll say a good one for you.
XO, Mary
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MAGOB- Love your new photo! So cute! Glad your sister's doing good. I finally feel recovered from my Lyrica hangover but now my insomnia is turning me into a raving shrew (sp?). Sleep has become the Holy Grail for me. Anyone have any suggestions?
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Thanks, Kate. I sleep best when I've walked for at least 30 or 45 minutes during the day. It can be hard to get motivated on a bad day, though. And that's the time it probably helps the most. Good luck. Sleep will come - hang in there.
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MAGOB- The weather has finally turned nice here in Arizona so I probably should get back into my walking routine. I know my pups would appreciate it!
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Oh dear...I have fibro and CFS...closed my hair salon 5 years ago because I felt the chemicals and stress were killing me...also have PSTD from 2 muggings at gunpoint before I got pregnant in 2000...long story short,adrenals and chemicals didn't help me, did it? The key to dealing with fibro and CFS with BC is to not eat white sugar, no white carbs(or very little), and try to at least walk. It helps!Also, get rid of people who don't support you---NOW!
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CrazyKitties- I do think walking helps with fibro. Thanks for the other tips. I will try them especially that part about getting rid of non-supporters!
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The problem when I walk (motion is lotion) is that I have to use my cane. I really need my cane, I don't just tap, tap tap along with it, I bear my weight on it. Then I start to get problems with my wrist and shoulders; numbness and muscle pain from the support I have to give myself. I even have a walker to give my right wrist a break (no pun intended) but then my non-dominant hand gets sore even quicker.....sigh.
I am going for a full day of MRI, x-rays, bloodwork and bone scan tomorrow at a new rheumatologist so I am very hopeful that she'll be able to help! Wish me luck. I'll pass on any news scoops!
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