For all those who suffer,sometimes in silence,sometimes not!
Perhaps we can share insights as to what does/does not work.
Allow one to vent,encourage and support oneanother.
Any takers?
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For all those who suffer,sometimes in silence,sometimes not!
Perhaps we can share insights as to what does/does not work.
Allow one to vent,encourage and support oneanother.
Any takers?
I'd be interested...
I will definitely share what I can!
when the pain gets sooo bad-I grab my mp3 player and listen to music and distract myself and it takes the pain level down a notch by distracting myself.
DealSniffer, good idea with the MP3 player, even playing on the computer must help out.
Think the hardest part of constant pain is not being able to do the simple things. On nice winter days, try to sit outside for just a few minutes, the fresh air & change of scenery helps.
Skippy, what are some of the ways you try to manage the constant pain?
Take care, Angela, Dealsniffer & Skippy!
go to a physiotherapist.they will give you a set of exercises to do.i do one of the excercises right in bed , so i can get out of bed without the excruciating pain that i used to get.
I try and walk everyday even if it is just a block or two,or I walk at the Shopping Centre which is great,especially during the winter.
My theory is if I don't walk,then I will seize up for good.That said,I'm still undecided,cuz sometimes it makes me better,and sometimes it makes me worse.Bottom line is I believe if I don't walk then I'll end up in a wheelchair.
DealSniffer's idea is right on,because if you can distract yourself from the pain,then it gives you some relief even for awhile.
I use a heating pad year round,but I swear by an oil called O24.
It's pricey(about $25.00) yet it is worth every cent.
Medication is something I don't really want to get into.
Take your blessings whenever you can get them,and take it one day at a time.
Sorry to hear that everyone here is in pain too. I have some major health issuse and on top of that I woke up about a month ago with back/hip pain. The Er said pinched never after some major pain medication through IV. They are/were thing pinched never but now they "might" see a problem with my L5. All I can say is I the pain medication is not working. I was wondering if you guys ever used Naprox? Did it work for you? I have so many health issues and a 2 other medication it limits the pain meds they can put me on.
Hey all,
Not a group I would "LIKE" to be a member of, in the sense... I wish that suffers just didn't have to suffer.
I'm 36 and have severe arthritis in my back and a condition in my spine called sacralization of the lower lumbar. Basically, my lumbar fused itself to my tail bone, and continues to fuse. I have less flexibility than I used too, which is really frustrating.
I take pain medication every night at bed time, after years of grappling with "is it lack of faith in God to add medication to my life" to finally deciding that using the medication was the best thing for me personally to do, to finally getting a regime that works most of the time for me.
I am also an 'only' parent, which means that I am a single mom, but I don't have support of a dad for my son. (long story, but great topic for another type of thread!)
Some tips I have learned to live by:
1. Don't overdo it. Know limits, and stay well within it. If a friend needs help moving, cleaning, or whatever; remember that my family needs the same things and I have to be well for them first. Use common sense, and balance.
2. Taking the pain medication every day, once a day, keeps the level even in my system; whereas, taking it only as needed when the pain is really bad, takes way too long for the medication to build up to be impactful, it could take days of full does (3-4 doses per day) before I hit the level of pain management needed.
3. Walking. Skippy is right, sometimes it's great; well other times you wonder why you just went for that walk, because you may feel worse. But, to stop moving because it "may" hurt, is not good reason to give up on it altogether.
4. For my particular condition (other's may identify), when walking, can you hear what sounds like bones in your back grinding? Shorten up your stride, your steps are too big and the sound in your ears (like an echo of bones clicking together), should cease. (my chiropractor told me that years ago)
5. Sense of humor, besides being very serious when I have to be, I have a great sense of humor and try to find the lighter side of everything. For me, God is my rock and salvation, and humor is one of His many gifts that he gave me to cope with what I have to deal with here on earth.
6. Music (as mentioned by another member), is wonderful! I listen to Christian music on my MP3 player, and can easily fall asleep to it, when needed.
7. Migraine headache pain:that is another one that plagues my life at times of the year worse then others (low pressure systems are nuts for me). I try to reduce the noise level in the house, lay down, maybe take medication for it (I say maybe, because I don't want to overuse it because I am young, I don't want to run out pain treatment options, which I am comfortable with). Sometimes I put the MP3 player on really soft (I don't play it loud any how) and that reduces my focus to one noise, lay on my bed and eventually fall asleep. I often pray, and talk to God about what is going on.
I wish you all a pain free day!
Tracy
CentrallyCalm
What is everones conditions? You don't have to say but I will so you can see where I'm coming from. Here they are in no order: Pituitary Gland tumour (Classified as a brain tumour), PCOS and bad insulin, Interstitial Cystitis, fibromyalgia and loss of peripheral vision. Most of these I got before I was 30. Nice Can't wait to 80.
wow-centrallycalm gave some good tips! I find that humor is very important because it helps to make things seem less bad. When I am in a bad mood-everything seems that much worse and then I just spiral down. I am having to start walking again and it is difficult but it does help. YesI'mCheap-you have alot of stuff going on and I hope that you don't have to deal with more stuff. I have dealt with chronic pain most of my life and doctors are screwed up because I was told it was in my head but I knew something was wrong. I was finally diagnosed with Kyphosis in 2005 which I was born with. It is a disorder where the spine grows incorrectly and causes the spine to have a hump like appearance but this isnt caused by slouching. It causes several other problems as well as back pain which I didn't know were all connected. I had pain going through my legs which made it difficult to stand and by my diagnosis I was no longer able to stand for more than 30min. It caused breathing problems because of the shape of my back so I had asthma and digestive problems and on and on. All the things I was having problems with were connected to this one disorder. I had surgery in 2007 and complications and another surgery Aug 08 and still healing from that. If I didn't have the surgery I was going to end up in a wheel chair. So now I have to learn how to move with a fused spine and rods in my back. But the good thing is that now I am able to have a chance at a life I have never had. The only downside is that I haven't been allowed to use my arm and back muscles while I was healing till a few months ago and I litterally have little strength. Sorry if I am complaining. I was only 22 when I was diagnosed finally and haven't been able to work since 2004 due to the pain. The funny thing is that I almost feel bad that I get to get better when there are so many people that are stuck with their stuff for life. I am totally not better yet and still can't get out of the house because the pain is still pretty bad from muscle stuff but I am improving slowly. I have made it my goal to educate people so they catch this sooner so they can get treatment before they get to the point I did. I actually started a blog kind of chronicling my journey with this as well which has been helpful for me too.
I Dealsniffer I understand what you are saying about the doctors telling you its all in your head. I first started having health issues at the age of 11, they told my mom it was growing pains. Morethen likely it was the start of my Pituitary Gland tumour. At 19 I when to see a doctor because my blood levels were "odd and weird" according to my GP. The Specialist said it was all in my head go see a shrink. I started to live with the problems, I let it go until my bladder start acting up. I have no bladder lining and 2 holes in it a point point and hold 200cc only. Then my life movie to the point that I counld not pretend that I was normal. At 24 I found out it could be a Pitiuarty gland tumour. Then the wait came to get to see a doctor. Which I did, but to bad she was an crappy overwork uncaring Doc. She order a CT scan and then told me my tumour was of no concern, she wrote it in a letter. Put me on meds that may being sick look like fun. In the end we head up moving to SK to find better health care. Which I have for the most part. I guess the point I'm trying to make is that people should not have to move to find decent health care and doctors that believe them.
YesI'mCheap-is the tumor growing and is there anything that can be done? That is awful that you had to do so much just to get somewhat decent healthcare. Where did you live before Sk? Was it Alberta? lol You don't have to share more about your stuff if you don't want to and I apologize if I am prying or being nosey. If you ever need to talk-I am totally available! I am stuck at home most of the time and SC gives me somewhere to go to keep busy and out of trouble! lol So I have pretty much unlimited time to listen if you or anyone ever needs a listening ear or someone to talk with. I am completely serious-I have no problems with you pming me if you need to talk or vent or what ever. Plus then I feel more useful if I can be of help to someone!
We lived in Manitoba (born and raised), then moved to Alberta and now SK, we may have to move back to Europe if I can get treatment here. . My tumour may have started to regrow, but we have to wait. The fun of Canadian Health care, I'm consider an urgent case, but I have wait 10 months to get in to the one Specialist. And in that 10 months I have had seizures and now hair loss. By no way with my tumour kill me it can be linked to reprouduct cancers and othe health issuses but they tumour it self just cause headachess, weight gain, hugh boobies and loose of vision. I know my tumour is small compared to someone with Cancer but at some point you have to ask why is so much attention and money given to Breast cancer over other things.
oh my goodness. do you have alot of seizures? That has to be scary. I know what you mean by waiting. I was diagnosed and then had to wait an estimated year and a half before I could even meet the specialist but was lucky and got in to see him in just over a year I believe and I had to wait a year for the first surgery even though I was at risk of disks in my spine slipping or something and it was frustrating. But at least I wasn't dealing with seizures. I actually had to have a CT scan because I have had a constant headache since October so that is about 4 months now maybe? My head is ok supposedly but my specialist who is actually a specialist for the spine and stuff is amazing and wanted to make sure I didn't have anything wrong in my head. Supposedly he as well as my dentist agree that the surgery that straightened my back indirectly caused my face muscles to be in pain which is possibly causing my headache. That is supposed to get fixed then with physio. I hear you on the headache thing-they can be awful. But back to you-it may be good that the tumor itself won't kill you but the pain that it causes can be possibly just as bad to deal with. It sounds like it is causing you alot of grief. Sorry I sort of went on about myself. You mentioned going back to Europe-have you been there for treatment before? Is there any treatment possible in the States? I have heard of people who can't afford to wait the wait times here in Canada and they go to the states for treatment. You probably looked into that already though maybe?
One of the hardest things for me to deal with is my limitations.
My wife works 1/2-3/4 of the time so I want to help out around the home.
Problem is when I load the dishwasher like now,or do laundry,it sets everything off,and I need to pull out my meds.
I guess you can say my tumour is the ugly step sister of Brain tumours. Brain tumours already have a hard time getting funding for experimental treatment and researcher. Then add something that is not a life or death tumour ans there is even less money for it. Many doctors I have meet have said that Breast cancer gets for much attention that many other reseachers have a hard time getting funding. There is a couple of hospital in the stated that deal with my type of tumours but they cost alot. In the States they do removed them, here in Canada we tend to treat with the same meds that are used for treating Parkinson. As for the Europe thing I'm a dual citizen of Canada and Britan and my Hubby was born in Europe so we would be coved under the health care there. The only thing is that my main supports would not be there, well there not here in Saskatoon either.
I'm like you Skippy my husband busts his butt and I want to help out so I got a part time job at walmart 12 hours a week, but guess what I have "taxed" my body and now I'm off work with nothing coming in and lots going out on meds and physio.
As for wait times.... I have mixed feelings about them. I worked as a Health Care Aide for many years in Nursing Homes and seen alot of odd thing. Like the family of a 104 year old women that want CPR done on her if her heart stopped and all measures taken. They wanted her to have Chemo for Cancer she had for years and had done nothing about it. She went on the waiting list since she was not a prime canidate. My own Grandfather think he should have the first bite of the Health Care apple, but the doctors have said to us that he would be worst from the side effects of treatment they he is no from the condition. He thinks we are trying to get this money, but they doc said he could out live my parents now that he is in a nursing home. He can wait, IMO.
I understand what you mean Skippy about wanting to help out and other people doing most of the work. Because of what I am going through right now, I can't do alot of the simple tasks I would normally be able to do so I have to depend on my family to help me out with my stuff on top of their stuff. Sometimes I overdo it because I feel bad and then I am worse off than I was before and can do even less. So I guess we need to somehow learn our limits and do what we can but maybe not feel so bad about what others do for us. I think I should probably be appreciating what my family does instead of kicking myself so much that I can't help.
YesI'mCheap-I guess that with you being a dual citizen that is in your favor at least maybe. Also your support system can still be with you even if they are not physically with you. I think your family and friends would rather you go where you have to in order to get better and be a ways away for a while than for you to stay here in Canada and be in so much pain.
So today I when to physio again second time for my pinched never ( they think), I found out on Friday that the ER might have seen something wrong with my L5. So I let the physiotherapist know that I was wanting for the reading of more x-rays. She asked me to have all the 3 reports sent to her.
So I call my medical clinic and ask to speak to my Doctors nurse. I'm told I can't I have to leave a message, fine not a problem. The front end girl is going on how she can help. So I tell her really I just want to the Doctors RN. I finally tell her I need the doctors nurse to fax all 3 X-ray reports to my physio clinic. She says can do that right away, fine whatever, she puts me on hold to find my file, my file is with my doctor, always is. She comes back to say my file is missing. I tell her check with the Doctors RN. Okay, she assures me, she will fax the physio clinic.
So a 30 mins ago she calls back to say the doctor wants to see me in a week. Okay I already had appointment made and she says the doctor will talk to me then about the report. I tell her the reports need to be sent to the Physio and she like oh really why did you not tell me this. I say I did and I want all 3 sent. So the physio clinic calls like 15 mins ago to say that only 2 reports showed up. So now I'm hold as she tries to find the report I already talked to the doctor about. I'm ready to scream at someone, why can't I talk to my doctors Nurse? Why am I talking to someone more then likely with limited medical training. End of Rant.
oh my goodness! that is frustrating! Medical people can be annoyingly frustrating. Hopefully your physiotherapist gets teh third report. I do agree it would have made alot more sense just to allow you to talk to your doctor's nurse. I hope things all get sorted out for you. Oh and are you in a place that you can scream without alarming people? If you are, scream and just let it out-I find that can be very helpful sometimes actually. Again, hopefully everything gets sorted out and you don't have to deal with any more incompetent people.
I think everyone should buy a birdfeeder and watch their comings and goings.
It has to be one of the best therapies I could recommend.
Skippy have anything else, I'm scared of birds? I normally clam, like but some days it like bang the head.
lol-I made a bird feeder a couple weeks ago and got some mixed bird seed and they are great to watch! The only thing is that we only have chickadees visiting the feeder so far adn for some reason they picked out all the sunflower seed and now won't touch the rest!:confused: Silly birds! Oh well, I guess i need to get more sunflower seeds...until then, I will just have to wait with watching the birds again. They are wonderful to watch though and so pretty and they have pretty songs too. Who knew chickadees would be so picky? Maybe you (Skippy) know that? Anything else that I should know when it comes to feeding the birds? tips are great.
YesI'mCheap-you don't like birds? hmm...I am not sure there is any other wildlife you would want to attract so maybe there is something indoors you could do or watch. Do you have a cat? You could get something that the cat plays with by him/her self and watch. I find watching my cat play is very amusing! Or maybe you could get a goldfish? Or maybe another kind of fish? I find sometimes anything that I can watch that takes my mind off myself helps. Even tv is helpful sometimes. That is all the ideas I have for now. What are your interests? Maybe Skippy and I could help you find something that falls with in your interests?
I have two cats, well really they are puppycats:cat::cat:. They have no real cat skills. I mean jumping on the bed is something they have yet to master in the last 7 years. . I really liked chipmunks but I have never ever remember they last time I saw, since we moved to Saskatoon. I read lots to take my mine off things. I also seem to visits alot of doctor offices:lolsign:. Not much of a life you can say.
I was diagnosed with psoriatic arthritis at the age of 20. At that time they didn`t treat arthritis as aggressively as they do now, so I was on massive doses of aspirin for many years. By the time they gave me stronger meds, the joint damage was done. I found one way to cope with constant excrutiating pain was to close my eyes and visualize a tranquil scene. (my favourite is the mountains) Imagine you are there, feel the gentle breeze, smell the wildflowers. Whatever works for you. It helped me to relax, which in turn helps the pain. These days I don`t have to use that much as the joints in my fingers, toes and wrists are mostly fused so I don`t have as much pain anymore. Also it`s controlled much better with the new (very expensive) drugs that are available.
As you said Skippy, there are always people that are worse off than we are and it helps to remind us to be thankful for the good days we have. I hope we all have a good one today.