Please Help?

Discussion in 'Fibromyalgia Main Forum' started by cazco, Feb 15, 2006.

  1. cazco

    cazco New Member

    Hi I have just joined up, and I have got to the point of being desperate! Can anyone please help me, I am on so many precribed drugs and am still in so much pain and I am now sleeping so much too! I sleep about 16 hours a day, not all at once, I wake every 2 hours in pain but go back to sleep again. I am now beginning to feel like life is not worth living anymore! Please can someone give me some advice as to what to do or try next?
  2. Hope4Sofia

    Hope4Sofia New Member

    Who is helping you manage this? Do you have DRs assisting you regularly? What about family?

    You have this board. There are a lot of wonderful people here who can encourage you and give you good advice. I'm new too so, just learning a lot. But I believe there is help for you.

    Keep the courage - you are in my prayers today.

  3. Hope4Sofia

    Hope4Sofia New Member

    bumping so you can see you are heard.

  4. pemaw54

    pemaw54 New Member

    You are with friends now. I have been exactly where you are. I take 27 different meds each day. I can easily end this life at any time and believe me, pain will make you want to end it. Ive planned it several times. I get to feeling useless and worthless. Cant work anymore. Cant go many places anymore. I had lost all of my workfriends. We are here for you at any time, day or night. these wonderful people give me hope everyday!!! Please sit back and start reading the posts and realize you are with us in our prayers and here on line. It has made a world of difference to me. I cant stay on line for too long cause I cant sit here but you can bet Im keeping my eye on you Caz. Jump in and now you will have people to talk to and listen to and LOVE YOU. Let us know how you are doing! Do not let this desease win.

  5. cazco

    cazco New Member

    thank you out there for your kind words, I have all my family which are so good. But the doctors i feel have all given up on me. They have got me addicted on morphine and now besides the pain I now get severe withdrawal effects every other day when I need to change my patch. (I'm on fentynil patches and loads and loads of codine!) I am going to lay down now but I will log on later. Thank you
  6. Cromwell

    Cromwell New Member

    i AM sorry you are in such pain. It could be that you need to look at some other helpers besides the meds. If they are making you sleepy, maybe you could see someone about reducing them or switching to something else.

    Would you tell us what meds you are taking. I notice doctors have a habit of prescribing another med without looking at your notes to see if they or anyone else prescribed other meds. Esp. if you have been to ER, you need to make a full list of meds and sit down with 45 min appt. and talk this over wiht the doc. If needed go to a pain management center if you have a good one.

    So sorry this is getting to you. Nearly everyone here is is pain some of the time, many all of the time, so you are in a great neighborhood here for support.

    Much Love Anne C
  7. Cromwell

    Cromwell New Member

    Just read you second letter. Maine has just issued a directive that all pain must be treated aggressively. With correct meds. Doctors have to stop being scared to prescribe properly for pain.

    In the USA there is a (wrong) assumption that opiates are worse than other meds, but the good news is that you are far better off taking opiates than hundreds of tylenol etc. When I was a kid in the UK there were tons of OTC cough medicines that had morphine in, plus a tummy "bottle" one could buy that was actually called Kaolin and Morphine.

    There has been some unnecessary hystria re morphine based drugs here. As a result, instead of a doctor giving you one good pain med at a higher dose, he will be scared and prescribe many meds. In fact, you would be better off with the higher good med that works.

    The attitudes are slowly changing, but just because you need the meds does not mean you are addicted. If you were out of pain, you probably would stop taking the meds. Right?

    Because Doctors cut people off quickly instead of tapering they then use words like addiction, which is wrongly used.

    Please please see yourself as a person of value. Do not feel so down you talk about ending your life. You CAN and MUST try and bear up here.

    I want you to write back and tell me three good things that have happened to you in the last year. Can you do that. We often lose sight of the small blessings when we are wracked with pain. I BET you have had a couple of good things too.

    I had two good things today:

    1) I discovered three packets of a favorite British food I love but cannot usually find here in the USA. It made me up.

    2) I cut my own hair the other day, as I could not bare to even use the free gift appointment I had, and it looks great.

    3) The sun has been shining all day

    Now your turn:

    Love Anne C

  8. cazco

    cazco New Member

    How did you manage to get off the patches? My consultant tried to take me off them by giving me morphine tablets, but I was in so much pain i couldn't get out of bed, I couldn't move and I was in tears until my partner stuck two patches on me to get me to sleep, (then when I was asleep he took one off). But the thought of coming off them frightens the life out of me, but I know thats what I am going to have to do, thats what the dr said.
  9. cazco

    cazco New Member

    I take fentynl 75, codine (lots) extra plus paracetamol, meloxicam, paroxatine, amatryptaline, magnesium and lots of senna! on top of that I am waiting for an operation on my carpal tunnel.
  10. cazco

    cazco New Member

    I have tried accupncture, I eat very healthy foods all the time because of the irritible bowel, I don't eat wheat or anything with yeast. I have tried osteopathy, homeopathy, a chiropractor. I don't think there is anything I haven't tried?
  11. cazco

    cazco New Member

    What are these?
  12. cazco

    cazco New Member

    I can only think of two that keep me going and 1) my kids, they are 12(daughter) and 15,(son). my son is taking his exams this year, Catering, he is so fantastic that he cooks (practices) at home. 2) My partner proposed to me at christmas and we are going to St Agustine to get married. We live in the UK. So I do have some things to look forward to, but when the pain is so bad it is very difficult to see anything at all good.
  13. JLH

    JLH New Member

    Welcome to our board. I'm glad that you found us. Hopefully, some of us can offer some helpful tips for you.

    First of all, can you list what all prescribed drugs and supplements that you are taking? Maybe we can get a hint from the list on why you are sleeping so much.

  14. Cromwell

    Cromwell New Member

    There is a start, you have two good things, three counting the St Augustine trip.

    I am from the UK as are a few others here, but I live in USA.

    I do think that your sleep pattern is what is making you so tired and probably contributing to the aches more.

    See if you can get on a sleep med that will give you a seven hour stretch of sleep as you are clearly not getting into REM sleep.

    I have this same problem, and tonight I intend to take some valium so I can get to sleep, instead of awake half the night. I know the pain awakes one too.

    Keep on thinking of the good things. We have a rule in our house that is of great help, we have to say two positives for every one negative, some days three positives. It does make us stop and think.

    Also, being on the computer can hurt ones back neck etc. So I am off now, andpromising myself only fifteen mins a day from now on. If you put Cromwell as your heading I can just go straight to my answers. Thanks.

    What part of the UK? I am from Cheshire.

    Love Anne C
  15. cazco

    cazco New Member

    Hi, I changed my patch this morning so I have had quite a good day (for me) I look forward to this day every 5 days, because I know I will be able to do a few things, I try to save up anything thats desperate to do for it. I live in Cornwall, right out in the sticks. We have just one shop a mile up the road then the closest after that is 15 miles away. I love being here though because you can hear the sea from my back garden.How long have you lived in America?
  16. cazco

    cazco New Member

    The probiotics you talk about, are they the ones in like yogurt drinks? can you get them in any other form as I don't eat dairy products much?
  17. MamaR

    MamaR New Member

    and I wanted you to know that I care also!

    You have come to a good place for encouragement and advice.

    With love...Mari
  18. Cromwell

    Cromwell New Member

    also lived in Lanner and St Cleer. Small world.

    Boy those Cornish winters can make you ache too.

    You have some great CSA's in the UK and even supermarkets sell organic foods there.

    I have lived in the USA on and off for 25 years.

    Love Anne C
  19. cazco

    cazco New Member

    Thank you all so much for your help, it has given me some hope at least now. I have had a rough couple of days, been in bed again so I haven't been on the computer. I will look for the probiotics in capsules, they sound like they might help me. I always thought they were only found in drinks. I have been taking magnesium for about 2 months and they help immensely with the cramps. I don't know if the trigger points are the same as shiatsu, any ideas? My partner has been doing it for years but he has been afraid to touch me with it. I spend at least an hour in a lovely hot bath that is wonderful, there is hardly any pain when I'm in it, it's great! My partner also does a wonderful massage that also helps. My father sends me all kinds of machines, some with gentle vibration and heat, another with deep massage, another with deep massage, which really hurt. Just talking to people who understand, really is helping too. Thank you. I just hope I am doing this right?

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