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Pain, Pain, and more Pain
Hi there,
Either this is a very new site except for platelet girl or no-one really needs to ask questions and I find that really strange considering that so little is known. I was only diagnosed just over a month ago and I am already about to pull my hair out. My whole life has been about illness. At 16 I started with severe endometriosis and I fell down a flight of stairs on my tailbone which meant I had back problems for years. No MRI machines in those days.
Oh yes, how rude of me. I am a 41 year old South African woman, that might help get the time frame. In 1994 I had a lower back fusion due to the fact that one disc was herniated and a small chip of bone was drilling its way into my sciatic nerve and slowly killing my reflex in my right leg. That took 6 months of recouperation. Tried to have children but found out that I had a reclining womb and that my tubes were swollen so the eggs weren't going anywhere not to mention that with the endometriosis I was backflowing through my tubes and my womb wasn't very habitable. I had a DNC to get rid of lesions and Cysts and stuff but by 30 it was clear that it all had to come out. So I had a haesterectomy and an overectomy and they started me on HRT's. I finally thought I would be healthy.
Wrong. Not 2 months later I collapsed and was diagnosed with Manic Depression which then became Bipolar 2 or Major Depressive Disorder - whatever. The medical fraternity after 11 years can't make up their mind. Anyway I have finally gotten the correct medication and have been stable for the last 8 months. Then my husband decided it was time to get divorced and I agreed. But I knew I could start a whole new life. That is when I started getting sick and it just wouldn't go away. It felt like I had flu in my entire body and I was just exhausted. I got medication for a bacterial infection that just gave me thrush and then the last straw was my neck seizing up.
That was when I hear the diagnosis Fibromyalgia. It felt exactly the same as the day I was told I was Manic Depressive. I didn't know what that meant either but I knew it was serious and I knew it was going to change my life for the worse.
So that is my history. I suffer from pain in my shoulder muscles and sockets, my neck, my elbows, my hands, wake up to a hand that is numb for the whole day, upper chest pain, IBS, tailbone pain, hips, weak legs, knees, ankles - is anything missing - oh yes, shoulder blades and upper back.
I don't sleep. I write this now after a night of absolutely no sleep because I am in too much pain all over. There is just no way to lie that doesn't hurt. I will be awake now for 36 hours or so and then maybe sleep for 6 hours. I do have hallucinations and yes my brain does go a bit schizo between the pain and the sleep deprivation. I spoke to my therapist about it. But I have the same problem as all extreme pain sufferer's do. Doctors don't want to hand out the opiats. Mine insists they won't work for this. My answer to that is "********". I am on all the medications already that I can take and he has added the Lyrica so what now?
I can't drive anyway because of the pain and dizziness. I'm just asking for some relief. What is the point of spending money on stuff that has no effect. Plus I am disabled and divorced so I don't have that kind of money to waste. Please give me some ideas on what to do?
A very tired South African.
Either this is a very new site except for platelet girl or no-one really needs to ask questions and I find that really strange considering that so little is known. I was only diagnosed just over a month ago and I am already about to pull my hair out. My whole life has been about illness. At 16 I started with severe endometriosis and I fell down a flight of stairs on my tailbone which meant I had back problems for years. No MRI machines in those days.
Oh yes, how rude of me. I am a 41 year old South African woman, that might help get the time frame. In 1994 I had a lower back fusion due to the fact that one disc was herniated and a small chip of bone was drilling its way into my sciatic nerve and slowly killing my reflex in my right leg. That took 6 months of recouperation. Tried to have children but found out that I had a reclining womb and that my tubes were swollen so the eggs weren't going anywhere not to mention that with the endometriosis I was backflowing through my tubes and my womb wasn't very habitable. I had a DNC to get rid of lesions and Cysts and stuff but by 30 it was clear that it all had to come out. So I had a haesterectomy and an overectomy and they started me on HRT's. I finally thought I would be healthy.
Wrong. Not 2 months later I collapsed and was diagnosed with Manic Depression which then became Bipolar 2 or Major Depressive Disorder - whatever. The medical fraternity after 11 years can't make up their mind. Anyway I have finally gotten the correct medication and have been stable for the last 8 months. Then my husband decided it was time to get divorced and I agreed. But I knew I could start a whole new life. That is when I started getting sick and it just wouldn't go away. It felt like I had flu in my entire body and I was just exhausted. I got medication for a bacterial infection that just gave me thrush and then the last straw was my neck seizing up.
That was when I hear the diagnosis Fibromyalgia. It felt exactly the same as the day I was told I was Manic Depressive. I didn't know what that meant either but I knew it was serious and I knew it was going to change my life for the worse.
So that is my history. I suffer from pain in my shoulder muscles and sockets, my neck, my elbows, my hands, wake up to a hand that is numb for the whole day, upper chest pain, IBS, tailbone pain, hips, weak legs, knees, ankles - is anything missing - oh yes, shoulder blades and upper back.
I don't sleep. I write this now after a night of absolutely no sleep because I am in too much pain all over. There is just no way to lie that doesn't hurt. I will be awake now for 36 hours or so and then maybe sleep for 6 hours. I do have hallucinations and yes my brain does go a bit schizo between the pain and the sleep deprivation. I spoke to my therapist about it. But I have the same problem as all extreme pain sufferer's do. Doctors don't want to hand out the opiats. Mine insists they won't work for this. My answer to that is "********". I am on all the medications already that I can take and he has added the Lyrica so what now?
I can't drive anyway because of the pain and dizziness. I'm just asking for some relief. What is the point of spending money on stuff that has no effect. Plus I am disabled and divorced so I don't have that kind of money to waste. Please give me some ideas on what to do?
A very tired South African.
Hey,I hate you have to go thru all this pain.It is awful and unfair.I have alot of the things you described,plus the Fibramyalgia.So I fully understand.I do wish there was something that would just make us well,so we feel atleast normal.It is hard just to do everyday things.Also around here if you dont look sick,then it is in your head,even a lot of doctors act that way..Well I will talk to you late.. (-:
Hi there,
Sorry I have taken so long to respond but have been having a small problem with the modem dropping the line. Frustration plus. Thank you for the good ideas. I have been using heated bean bags like the phisiotherapists use but sometimes that can be a bit harsh. Either way it works. However SA summer is a bit hot so hotbags can really be a bit much. Your way sounds better.
Thank you for your loving support. It always makes one stronger knowing you are not alone.
All my love
Sue
Sorry I have taken so long to respond but have been having a small problem with the modem dropping the line. Frustration plus. Thank you for the good ideas. I have been using heated bean bags like the phisiotherapists use but sometimes that can be a bit harsh. Either way it works. However SA summer is a bit hot so hotbags can really be a bit much. Your way sounds better.
Thank you for your loving support. It always makes one stronger knowing you are not alone.
All my love
Sue
Thank you Wildflower12. I have spent so much time writing to people inspiring them that I was starting to think that no-one was seeing me. I guess you have that hang-over from Bipolar. I have done 5 years of therapy so I am better. As for doing not much, I am in the middle of a divorce and I am moviing tomorrow. I am going to be so....I can't describe it. As it is I haven't slept again. But the end result is going to be just what you described. Someone there to help me. I will be with my Mom. Wonderful woman. We are more like sisters and friends and we can talk for hours :) Now I just need to educate her on the syndrome. She seems to think that once I'm there and away from stress all will be well and I will just bounce back.
I agree to an extent. Less stress will exert less force on the body but I'm certainly not bouncing back. I will start light walking to get the joints going and then pay for it. I will also be changing my diet and see how that goes. That's all I can think of to do for now. It's a kind of wait and see thing. Then there's my insomnia. Maybe feeling safe will change that but it sure won't change the pain. I must remember that Neurontin. I hope we have it here in SA. I'm on the first line of defence. You know Lyrica.
Anyway, gotta go. Laptop has to go to the office now and I must try and see if I can get my desktop PC to work. That's a whole other story.
All my love
Sue
I agree to an extent. Less stress will exert less force on the body but I'm certainly not bouncing back. I will start light walking to get the joints going and then pay for it. I will also be changing my diet and see how that goes. That's all I can think of to do for now. It's a kind of wait and see thing. Then there's my insomnia. Maybe feeling safe will change that but it sure won't change the pain. I must remember that Neurontin. I hope we have it here in SA. I'm on the first line of defence. You know Lyrica.
Anyway, gotta go. Laptop has to go to the office now and I must try and see if I can get my desktop PC to work. That's a whole other story.
All my love
Sue
I didn't know this link existed. I was looking for some answers and it
looks like a whole bunch of people are looking. Right now I just hurt so bad and have down and out for 7 weeks.Right now my right hip to my knee is so painful I can barely walk. I have become a prisoner in my own house. I know about how you are feeling. We could be sisters- I had endrometriosis and had a hysterectomy when I was thirty. I was officially diagnosed with fibromyalgia a week ago, but I knew I had it a couple years ago because my sister has it and my symptoms were the same. I am also Bippolar and can't take the meds. Have you tried Gabapentin (Neurontin)? It seems to help, but also makes me dizzy. I know it is hard just to say "hang in there". Make small things your daily chores so you feel like you accomplished something. If it doesn't get done oh well. Do you have someone that can help you with the things you just can't do? if so, make a list for them and have them come for a couple of hours a month. With this you certainly learn to slow down and have patience. You have a computer. Spend some time listening to some motavational speakers. Iisten to Dr. Wayne Dyer every day. From his link, you can find more. Take a chair and go outside and just be quiet and be with nature. Listen to music- it clams you down and quiets the mind. If you have never tried meditation, try it. There are links that have a guided meditation.
I wish you goods days and better nights. Wildflower12
looks like a whole bunch of people are looking. Right now I just hurt so bad and have down and out for 7 weeks.Right now my right hip to my knee is so painful I can barely walk. I have become a prisoner in my own house. I know about how you are feeling. We could be sisters- I had endrometriosis and had a hysterectomy when I was thirty. I was officially diagnosed with fibromyalgia a week ago, but I knew I had it a couple years ago because my sister has it and my symptoms were the same. I am also Bippolar and can't take the meds. Have you tried Gabapentin (Neurontin)? It seems to help, but also makes me dizzy. I know it is hard just to say "hang in there". Make small things your daily chores so you feel like you accomplished something. If it doesn't get done oh well. Do you have someone that can help you with the things you just can't do? if so, make a list for them and have them come for a couple of hours a month. With this you certainly learn to slow down and have patience. You have a computer. Spend some time listening to some motavational speakers. Iisten to Dr. Wayne Dyer every day. From his link, you can find more. Take a chair and go outside and just be quiet and be with nature. Listen to music- it clams you down and quiets the mind. If you have never tried meditation, try it. There are links that have a guided meditation.
I wish you goods days and better nights. Wildflower12
So sorry for all you are going through. It is rough and hard to deal with. This sounds crazy but it does ease pain a little bit. Fill your tub with water as hot as you can stand and pour a glass of apple cider vineager in it and soak. You will smell like a salad for a while but the smell does go away. Also if just one area, like neck hurts. put a towel in hot water and the vineager, wring out and drape across your neck. I can't take the Lyrica or any oral pain meds due to IBS and UC so my pharmacist said to ask dr for pain patches. Hope he will give me script for them and that they work. Anyways wish you the best. Try to stay strong and know you are not alone.
Monkey1mill
Monkey1mill
Hi there.
I do love the imaginative names everyone has. Thank you for your post and ideas. Yes I must say if there was ever a time that I wished I didn't live here it is now. I am stuck with Government Medicine because I can't work and my husband is divorcing me. I have been doing a lot of warm pad treatment on my joints and it relieves a lot but I only have so many and I have to continue warming them in the microwave which I will not have for much longer.
I must say coming online is the best thing I ever did. I was so alone before this and never knew a thing about what to expect or what was out there.
Thanks so much for your ideas. I will ask our backwoods pharmacies if they have anything like you mentioned.
It's 3am again so best I say have a great day :)
Sue
I do love the imaginative names everyone has. Thank you for your post and ideas. Yes I must say if there was ever a time that I wished I didn't live here it is now. I am stuck with Government Medicine because I can't work and my husband is divorcing me. I have been doing a lot of warm pad treatment on my joints and it relieves a lot but I only have so many and I have to continue warming them in the microwave which I will not have for much longer.
I must say coming online is the best thing I ever did. I was so alone before this and never knew a thing about what to expect or what was out there.
Thanks so much for your ideas. I will ask our backwoods pharmacies if they have anything like you mentioned.
It's 3am again so best I say have a great day :)
Sue
I'm so sorry that you've got this, it does make everyday life hell to deal with. Try everything you can, heat & massage really do help, as does light to medium compression especially if its fingers / hands / toes/ feet, I have compression bandages -works like tubigrip, but it sticks to itself & you can get it to fit on any body part. I get lots of finger & hand pain & it helps. Are you in S.A. ? I am in U.K. here there are lots of support groups online and live they are really good too. I hope this helps a bit. xx
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