Dealing with the pain

[Char1otteBrown]

I'm finding it hard to deal with the constant pain. I take 4000mg of Co-Dydramol per day and it doesn't touch it. Doctors are more than useless in my area. I live on my own and my biggest fear is getting stuck in the bath. I try to exercise everyday by walking my dog and I try to get at least 8 hours sleep. Not that that works. I have trouble falling asleep even though I'm shattered. There is a lot of stress in my life at the moment due to manic neighbour, but she is moving soon thank god. I am allergic to common food stuff so my diet consists of sandwiches when home. I eat out in cafes for hot meals as I can't cook for myself. I must admit that I don't do this everyday as money is very tight. I had to give up work four years ago, and I am still paying off debts from that time. This also adds to my worries. Any advice would be gratefully recieved.

[Char1otteBrown]

That is a doctor that I'd like to see. But if they have Fibro then they most probably don't have the energy to see patients. I'll try a search on internet myself. Defo keep smiling and I have my dog for listening. In fact I'm getting a new dog next month so double trouble.

[PainWarrior]

That's wonderful news! Gosh I'm sorry about the heartburn. A good night's sleep is the best medicine for this disease! I think I'll ask my rheumatologist to put me back on Amitriptyline and I'll forego the flexeril for awhile.
I once read about a doctor that was brought low by fibromyalgia himself. I wish I could find him on the internet. Talk about a sympathetic doctor!  He KNOWS what we go through!!! If I ever remember his name or find him I'll send you the link.
Funny about the internet, some doctors want you to find out all you can, and others say none of it is reliable.
As my Dad always said, "Keep smilin"! I think a good sense of humor is the only way to survive this disease and the world in general. Of course we can't leave out our dear Lord. He is always there to listen.

Take good care,
Carol C.

[Char1otteBrown]

Thanks for the post, checking up on me. Amitripyline is going great. Still can't get to sleep but at least I sleep all night and it is my alarm clock that wakes me, or I sleep till late. Side effect is heartburn, not bad but still there. I can put up with that just for a decent night's sleep. Some gp's still live in the dark ages and they do not understand Fibro. I always take printouts from the net about it when I visit new doctor. We have a Fibromyalgia day and specialists so why can't the average gp understand it. One day......dreaming of that day........... now I sleep all night. Hope all is well with you

[PainWarrior]

Hi there Charlotte,
I thought I should check in with you and see if you are doing any better now that you are taking amitrypyiline. I sure do hope so!!! I know that dealing with doctors who really don't have the foggiest idea about what pain we are in is so frustrating. I'm contemplating a G.P. change soon. I dread having to start once again with a new doctor.
At my age (63 soon) it is getting a little old (no pun intended)!

Take good care of yourself.
Carol C. (PainWarrior)

[Char1otteBrown]

Thanks for the support, Watch out for Naproxen though. I was on it for two years and it weekened my gums so much that I lost all but two of my teeth. I now wear dentures. Take good care of ya teeth and make sure your gums are healthy, mine were not thus this unusual side affect. I now take Co-Dydramol and Amitrytiline. I love hot water bottles as they tend to hit the spot. I also use deep heat on my hip when pain is really bad. Let's be there for each other. I have twitter account under same name and facebook and wordpress under my real name of ann taplin. Look me up if you want to talk.

[stevesgurl1970]

hi there charlottebrown,i myself was diagnosed with fibro last year at the tender age of 40yrs ;-[..its a horrible thing to have..i can totally sympathise with your symptoms as i suffer terribly with pain from this myself..i am taking naproxen dihydracodine paracetamol and amitrytiline on a nite....i find that nothing really helps when the pain wants to flare up...my sleeping patton is all over the place...i get lots of neck pain causing headaches too..i find putting a hot water bottle round my neck helps alittle..the doc told me that keeping mobile is the key to coping with this condition...wat a crock of s..t....ya cant walk n get motivated wen your in pain..i am lucky to have a husband who totally understands me n my condition and he knws wen its a bad day and a really bad day...i have had to find out about this horrid condition frm the internet as my rhumatoligist didnt tell me anything..just said ..thats wat ya got now go home n live with it..docs dnt sympathise at all..well i sympathise for you hunny...be well..;o)

[Char1otteBrown]

It's all well and good saying slow down and rest but I live on my own and I have to go shopping, do housework etc. I have slowed down and given up on many things that I used to love. But what is the point of slowing down to a crawl and then not enjoying anything. It has to be a fair balance. My circumstances are looking better as neighbour moving next week, but my dog still needs walking. I rest when the pain and tiredness dicates and I try not to take too many meds. I have a high pain threshold. I know that what works for one many not work for another and thank you for your view.

[Fibromom23]

by the way I did go the medical route and was on so many  meds I was nothing more than a zombie - did it work?  NO.  What it did was set me on a course of taking meds to counter act the original meds then meds to counteract those.  I was on 16 different meds a day taken several times a day.  I am NOT a pharmacy nor am I am druggie so I said enough is enough.  I did my homework and researched as much as I could to get the above results.

Most doctors and I do mean MOST doctors do not understand Fibro - call us names - send us on to other "specialists"  and run so many tests on us that we feel like we have had everything done to us.  Yes I have been stuck with a needle 32 times to test my nerves,  hit with shock waves to test same nerves another way and had everything from head to toe MRI's, CAT Scanned, and Nuclear tested to death.  I spent two months getting tested every few days with some being comfortable and some not.  I was lucky and had a wonderful rhumatologist that checked me from head to toe and was very certain before saying what I had and I have a long laundry list of things.  Unfortunately she died of cancer about a year after my diagnosis.

My pain was so bad one night that my husband rushed me to the local emergency room.  The doctor saw what all I was taking, looked shocked and told my husband that I was maxed out on meds that there was nothing they could do for me.  Like a jerk he asked the doc if I was faking this pain.  The doctor gave him a dirty look and said "Look at her!!!  She IS in a hell of a lot of pain but she is on so much that if we gave her any more it would kill her and I am surprised that she is not dead with what she is taking".  That put the fear of GOD into me and it is the day I choose to change.  I did not immediately go off of the medication because that could also have killed me.  I just worked with my current doctor to get off of everything slowly and I never went back.  I researched and found my answers and I listened to my body.

[Fibromom23]

The only thing that I have ever found that helps for me is to just simply listen to my body.  No pain relievers ever helped me and most of what you all take will harm other organs in the body.  Stop and listen to your body.  If it hurts - REST, if you have stress consider this fact - IS anyone or any thing really worth the pain you get with fibromyalgia???  Every one of us has to take responsibility for what we ALLOW our bodies to go through.  Do neighbors really bother you or do YOU let them bother you?  Does your dog really need to be walked as often?  It does not matter what you or anyone else wants.  Our bodies are dictating what we can and can not do and not us and once you realize that trust me the pain levels will start to drop.

I am 54 years old and was diagnosed when I was only 43.  I cried like a baby and fought it every inch of the way.  I refused to slow down.  Result?  Pain so bad I could not deal with it.  Finally I listened to this old body of mine - took very good care of it with proper diet, slow weight loss, and learning to say NO and not let things bother me so much.  The end result?  I am in a lot less pain.  Am I as active as I once was - of course not.  We have to come to terms with the fact that those days are forever gone and learn to deal with it.  

Face it there is honestly NO pain killer out there that is going to help us.  We have to help us by doing the above.  LISTEN to your body and follow it's warnings.  

I am not a medical doctor or a nurse.  I have done a great deal of research and just everything I could do to improve my life as much as possible.  What I have learned is that fibromyalgia has more to do with a malfunction of your brain waves.  It has nothing to do with actual "REAL" pain but more so in our brains lying to us.  So we have to just keep researching for ourselves and doing what works for US.  What works for me may not work for you and so on.  Do your homework and listen to your body.  Stop trusting medical science and so called "miracle drugs".    Yes stop trusting medical science because from what I see and hear - they either do not believe us or pump us full of pills but other than that do not give a hoot about us.  Even doctors you THINK may care - unfortunately I have found that most just humor me and send me out the door.  There are some good ones  out there but they are liking finding a needle in a haystack to find.  Good luck folks.  I hope this helps.  It sure helped me.

[lvfrogs]

Just wanted to mention that if you have a heart condition, you should not take Voltaren on any regular basis. I was just prescribed that by my doctor for the pain in my knee (did something to it - not fibro pain) and will only be on it for less than a week because I have a heart condition and a hiatel hernia.  

I hope the Amitriptyline helps you. My sister takes that and likes it. I have started Savella and so far so good. You sometimes have to try different meds to see what works for you. Good luck!!!

[Char1otteBrown]

Been to Dr and prescribed Amitriptyline, to be taken at night time and advised to take normal doses of Co-dydramol during the day. Was not sure if the Dr actually believed in Fibro. She said it was just a label for undiagnosed illness. When will Dr realise that this condition is real. Confused as one Dr says one thing and another knows nothing.

[Char1otteBrown]

Thank for advice. Was it because you had Hep  C that the stomach trouble began or was it just Voltaren?

[truredhead]

I just wanted to let you know to watch the voltaren. I was taking the diflonac and it totally ruined my stomach. I was taking it twice a day for 6 to 8 months. I could not figure out why I having so much digestion upset. Then doc said to stop the diflonac  I thought it was the greatest drug too until I found out I had Hep C and the diflonec had started the symptoms of liver disease. My stomach got better but I now have a sensitive stomach and an ulcer.

[Char1otteBrown]

Yeah, I use heat from hot water bottles. I'm 43 now and I feel that there is no end to the symptoms that I suffer from. Going to Doctor next wednesday, earliest appointment available to discuss the two new drugs mentioned. I just hate being bloated all the time. Where has my waist gone. I look pregnant.......Thank you for your support

[PainWarrior]

I'm so sympathetic. As I get older ( 63 now) the pain has increased. I would be lost without my heat pads and microwave socks I make full of long grain rice.
I will keep you in my prayers.

[Char1otteBrown]

Climate is real bad for Fibro. I can't remember a day without pain, Tired all the time. Doctors over hear don't care or research the condition. Only one private specialist in country and he is £250 per visit. I can't afford that even once. But ho hum, I survive

[PainWarrior]

I agree that amitriptiline helps with pain. It is also great to help you sleep. I've taken both Voltaren during the day and amitriptiline before bed with very good results.
Gee I sure hope you get good results with these. I would think England's climate is hard on Fibromyalgia.

[reidys]

  ask about amitriptiline it woks for me keeps the paain away

[Char1otteBrown]

Unfortunately, we don't have Walmart in England, but I will mention this drug to my doctor. Thank you for your help

[PainWarrior]

I've been fortunate to have found early on a miracle drug. My rheumatologist put me on Voltaren for pain many years ago. The generic form is Diclofenac Sodium 75 mg twice a day. It is a NSAID
and is coated to be easy on the stomach. Nothing works as well as this.
I think it is on Walmart's $4.00 prescription list.

[Char1otteBrown]

Totally agree. It is a fine line to follow. Try to rest after activity but aging father with memory loss doesn't help. He forgets that I'm ill and calls me all the time for favours. How can I say no. I'm sick and tired of trying to explain to him every single time. I try to keep possitive but it is hard sometimes. Been to pain clinic at local hospital but they were of no help. I ended up with more pain just be travelling there. I used to be a riding instructor, a busy outdoor life, now I see the world from my garden. I still have contact with horses so I'm lucky there but I cannot ride anymore. I had to sell my horse two years ago and even though I can see him whenever I want, it still broke my heart. I saved his live, backed and schooled him. So my short walks with my dog are very important to me. We are only out for 15 minutes or so, 3 or 4 times a week. Thank you for your concern and advice.

[acker]

hey mate that's heII, I know of the discomfort and  lack of quality of life with the pain, but not to that degree. i also stopped work, but fortunately have decent medical services... there is a pain management forum here that might be helpful.
the neighbor leaving will hopefully take some
problem away. I've also found it a fine line between doing too much and doing too little; so with everyday tasks and walking, wonder if walking dog is too much on top of it? or maybe it's something you like doing a lot so that's doing good. it's hard to stay optimistic when so disabled