Just too much pain :(: Is there anyone... - Fibromyalgia Acti...

Fibromyalgia Action UK

59,301 members66,356 posts

Just too much pain :(

Lucyw profile image
15 Replies

Is there anyone out there that can help or advise me. I'm in constant pain unless asleep, but as soon as I turn over or need the loo I'm awake and the pain begins all over again, takes ages to get back to sleep.

I have the doctors on Monday and wanted to know if anyone has been successful in getting Morphine or oramorph. I'm just so desperate for some relief. None of the patches worked on me as I became allergic to them.

Any replies would be great.

Best wishes painful Lucy.

Written by
Lucyw profile image
Lucyw
To view profiles and participate in discussions please or .
Read more about...
15 Replies
hamble99b profile image
hamble99b

oh lucy, I'm sorry you are in so much pain.

I'm on pregabelin. I've never had the other two.

Fibrofoggiest profile image
Fibrofoggiest

Hi Lucy, I use both MST (sustained release morphine) and Oramorph for breakthrough pain and if my back spasms. I know there is a view amongst some medics that morphine is a blunt instrument for the treatment of fibro, but I have other conditions too, which alters the overall picture.

Have you been down the Gabapentin and Pre-gabalin route at all, as some people find them very useful. I also take amitriptyline which whether its a placebo effect or not, but I seem to get benefit from that.

Do let us know how you get on.

Foggy x

Lucyw profile image
Lucyw in reply to Fibrofoggiest

Hi foggy,

I have tried Gabapentin and Pregablin also Amitriptylinr, none of which worked for me at all. I'm now desperate to stop this pain. I've asked before for something stronger than Zapain and always get a no. This time I shall be more forceful, I need to continue working so I need something or I will have to stop my entire life as pain is just unbearable.

Thanks for replying, I will let you know on Monday after I've seen the doctor.

Fibrofoggiest profile image
Fibrofoggiest in reply to Lucyw

Hmmm I think I too would be looking for something better than Zapain if I were you. Is your dr up to speed on Fibro ? If not, it may be time to consider changing to another GP, alternatively you could as to be referred to a pain management team, who may well have a better range of treatments suitable for Fibro. I look forward to hearing how your appointment goes on Monday .

Foggy x

Lucyw profile image
Lucyw in reply to Fibrofoggiest

Thanks foggy, this is a new GP! Appt at pain management in November waited nearly a year!

rayeanne profile image
rayeanne

Hello Lucy.

I have had fibromyalgia tor 30 years. I don`t know how much knowledge you have of this condition, but it is a muscle disorder caused through a combination of many physical and emotional stresses.. Hence the muscle aching which causes exhaustion, and feelings of malaise. Sleep is disturbed, and once awake it hard to drop off again, no position in bed feeling comfortable. I twas undiagnosed for many years.. I tried chiropractic treatment which made me feel worse.It would take me a week to get over the manipulation.Physiotherapy, which was also too severe. Hydrotherapy, which i found helped. Mainly due to the hot temperature of the water penetrating the muscles. My Doctor then sent me to an Osteopath specialist, who told me, i had fybromyalgia, and that when we sleep deeply, we produce a chemical in the brain, called serotonin, Lower levels of serotonin from lack of sleep, leads to lowered pain thresholds or an increased sensitivity to pain. So i was given 20mgs of amitriptyline, which slowly increased to 40mgs This medication causes drowsiness ,and taken an hour before bed will deepen sleep, and therefore help serotonin production, leaving you feeling refreshed and able to cope with pain so much better. My pain decreased considerably, and i have been on 40mgs for around 25 years. This is a safe low dose. When used for depression, the dose starts at 75mgs and can increase to 150mgs. So i feel happy with my meds. Over-the-counter supplements such as 5-HTP,also helps with serotonin levels, so this may be preferable if you would like to try a natural remedy I know what triggers my pain, so i try to pace myself. Too much physical activity/housework/carrying heavy shopping etc will still cause aching, but not as bad . At times like that i find heat helps. So a hot bath, a infared heat pad, a light back massage, deep heat cream, and cocodamol and ibuprofen all help. Anything to relax those tight muscles. But most important ,is rest until the aching subsides,. as it is totally exhausting and debilitating. A change of lifestyle to relieve the ongoing cycle of pain and fatigue is preferable. Gentle swimming helps to relax the muscles, as the water supports your body.It also helps to reduce stress and therefore will have the added bonus of helping you sleep better . A sauna or steam room, is beneficial too. Something like pilates aggrivated my fybromyalgia, as it concentrates on deep muscular control..My Dr advised me to avoid it. . There is no cure unfortunately, but fybromyalgia can be managed. I know what you are going , but believe me, you can have the quality of life that you desire, however it is important to be kind to yourself, and take some time out to relax, listen to some favourite music, read a book, It may bring more balance to your life, help you fight stress, and boost your energy for the things you need to do on a daily basis..I have managed to raise a family and keep active, Learn to say NO, as taking on too much will keep you from the rest, relaxation and exercise that you will need to feel well. This condition mainly hits women, and those types are generally perfectionists, with high expectations, I am one of those !! I still get it wrong, and sometimes i ignore the signals my body gives me, as my mind is eager to carry on, but i always regret those decisions not to stop what i am doing, as i then suffer. You should always listen to your body.. We can`t change fundamentally who we are, but we can be aware of our own bodies and therefore treat it with the respect and care it deserves, as without our health, all the things we strive for in life become meaningless. Be positive.

I hope this has helped you Lucy. Best wishes to you.

Lucyw profile image
Lucyw in reply to rayeanne

Hi Rayeanne, thank you so much for the long wonderful reply. You totally explained fibro to me. Some of which I knew but mostly I didn't. You are so right in me being a perfectionist and over doing things. Simple jobs such as a bit of dead heading in the garden and suddenly I feel my back and legs going. I continue saying to myself oh I'll just finish this little bit and then Bang...the pain begins and stays with me all day and into the night. Thank you with regards to Amitriptyline, I did try it once but it just sent me to sleep and I'm still working 3 mornings a week even though some days this is a struggle, so I gave up on it and continued with Cipramil which is also a good antidepressant.

Once again thanks for advice and details, I really appreciate you writing.

Kind regards

Lucy

Tattyhead53 profile image
Tattyhead53

Is it possible to not have flare ups if you listen to your body and do what it dictates Rayeanne?

rayeanne profile image
rayeanne in reply to Tattyhead53

.I do believe that the condition is managable, if you pace yourself and not try to overtire yourself. There are exceptions though, from outside influences. If you become ill, with flu for example, the virus which causes you to feel very tired and achy,really gets into the muscles of a person with fybromyalgia, and the aching is magnified, compared to the symptoms of flu in.a non fibromyalgia suffering person. So flare ups are managabke up to a point. There is nothing anyone can do about contracting a virus, so you may need extra hot baths and pain killers at times like that. Also stress or upsets can set aching off,due to tension. This condition is heavily connected to emotions, and hormones. At those times be kind to yourself and find time to relax, before the pain really gets a hold of you. I have to admit that i do not ever imagine a life without .amitriptyline, as it helps me sleep. So yes, listen to your body, after all, if you think about it logically, we feel pain and the brain tells us we hurt for a reason. It is natures way of warning you, & getting you to stop what you are doing, and if you are not going to listen to it, then you will be laid up for a few days recovering. The secret is pace yourself everyday, and find time to relax everyday., and catch pain early, and your fare ups will decrease.

rayeanne profile image
rayeanne

Thank you for your kind comment. I hope that my advice has helped you to feel comforted, and positive that you can manage this painful condition

Lucyw profile image
Lucyw

Thank you so much Rayeanne

It's my poor husband, I feel sorry for. He is very active and young for his age and still very much enjoys going here and there, and I feel I hold him back terribly. I can only manage the odd shopping and then I'm done in. I have to go home and sit down and can hardly move. When I do move about I make a terrible uncontrolled ooh and ahhh noises I don't even know I am doing it and 'oh dear' repeatly over and over. I need to get a grip but the pain is 10/10 all the time, I never get a moment without it. Even when I work which I'm so strongly trying to,stay doing 3 mornings a week. They are kind to me there, helping with moving and bringing me trolleys of notes etc. but I know eventually work will stop because of the fatigue and pain. I love and appreciate all your advice. Thank you so much.

Lucy - already in pain at 7am :(

evie222 profile image
evie222 in reply to Lucyw

Hi Lucyw

I Just had to reply to you you sound like me so much my husband is the same and i like you try to keep hold of my job i have had for 25 years i am now only 3 days like yourself but them 3 days is all i can manage and i am lucky enough for me my job to be a sitdown job . i fully understand Rayeanne on how you should try to pace yourself and learn to know when your body is telling you to rest along with the fibromyaglia i have arthrithis if i do go shopping or try to do normal day to day things i cant after about an hour my body is aching but the feeling inside is so hared to explain its feels like its in the pit of my stomache and i feel really ill . Somedays you feel like whats it all about is your life over for good

But then i get up get ready and tell myself no come on dont let this beat you . I read up and study fibro a lot and the thngs it does to your body is crazy i have sleep apnea and am going to ask my gp to try and get this sorted i wake up in the night with both my legs in so much pain as if the blood is not getting through and the pain is unbearable my husband says i am not breathing properly in my sleep and i read up this is another one of firobs add ons does anyone else suffer from leg pain .. I have recently be given a steriod Injectsion this is my second one and it really helps for about 3 weeks you feel like you have been reborn all your energy comes back and because this has worked there going to try me on a new medication so i will let you all know how this pans out and if i feel any better. Often when your out and about you look around in pain and think why me but talking on here makes you realise there is a lot of us out there and will this forum we can all try and help each other a little bit . Take care All xx

Lucyw profile image
Lucyw in reply to evie222

Hi Evie,

I too like you have terrible leg pain, almost all the time bad enough for me to loose my balance and tumble, stumble and fall over. This is the most terrible illness I've ever had and I too like you have the start of oesteporous arthritis in both hands, degenerative disc disease in lower back probably not helped by a slipped disc many years ago, ulcerative colitis which is an inflammatory bowel disease. I hate most days, but my husband says there are people worse off than me. Which of course is true, but I don't know them I only feel my pain. To top it all off I have gall stones so waiting to have gall bladder removed.

Here's to a hopefully pain free ish weekend...best wishes

Lucy

evie222 profile image
evie222 in reply to Lucyw

best of luck to you lovely to talk to you just try and be positive i know its hard but we really cant let this horrible fibro take over are lives best of luck to you i really do hope you have a pain free wekend as well xxx take care

Mdaisy profile image
Mdaisy

Hello Lucy,

Please do look at our FibroAction website to access downloadable factsheets All about Fibro covering Medications, Symptoms etc.

Here is the link;

fibroaction.org/Pages/About...

As Rayeanne touched upon listening to your body, when to rest & pacing could be helpful to you.

Here is a link containing helpful information;

fibroaction.org/Articles/Be...

Hope this is of help to you

Emma :)

You may also like...

pain too much

have a very bad ache or pain under my breast can anyone shed any light or has anyone had this...

Anyone got any medications that helped? The pain is too much to bear now.

in my head? It's pain that is the disease, pain that needs treatment in itself. I'm struggling,...

Spasum pain just to much to bare

extremely painful spasums. It feels like im hit in the lower back with a mallet and shooting pain...

insomnia is getting too much

Its 0840 and ive been awake since 4am. Its not even so much painsomnia - the pain never gets...

Fibromyalgia is too much

I have been down like every day with pain and more pain taking medication where it does not help,...