At my wits end.

[sarah82]

I have now had fibromyalgia since 2010 and have had preglababin, gabapentin, amitytriptiline, diclofenic, ibruoprofin, paracetomol and naproxin and not one of these pills have touched my pain. i have also had tens machine accupuncture, physiotherapy and both herbal and natural treatments and nothing helpful here either. the problem now despite all this and course diets and excerosise i am probably suffering worse and the drs wont help me with anything the last time i slept more then 2 straight uninterupted hours was 2010 and the depression suicidal thoughts anger and pain are unbearable. i take duluxotine 60mg a day and well they dont seem to help my depression at all. i dont know what else to do to keep myself going no im literally ready to give up im 99% unbearable to be around and have spent 3 years just getting on with it and the drs say no sleeping pills will help and that to get the pain under control will fix it all well der thats why its a chronic illness im just lost as what else is left for me to try or do.

[Shazzzy]

Hi Sarah, i am so sorry you feel so low, pain is very difficult to control. I have found a lot of tablets make me feel worse or cause another problem, so i take a vey low dose of gabapentin and amitriptyline. What also helps enormously is practising deep breathing as it relaxes the muscles in the body which lowers the pain, you can do it anytime, anywhere it also calms the mind which can be quite crazy with the fibro. I also listen too guided meditations off the internet, they relaxing as well, just type in guided meditations and listen, you get lots of different ones, so if one doesn't appeal try another. I do so hope you can get some relief from your suffering. Im sure their will be people on here offering much better advice than i can, but this is what stops me from screaming.

[Hidden]

Sorry to hear you are going through such a bad time and not sleeping just makes the pain worse and harder to cope with. I find these meds either have intolerable side effect or dont work at all. Doctors either dont understand or are not sure what to do and some dont listen at all. I have managed to see a GP lately who did listen when I said I wanted to go to a pain clinic so he has referred me and am waiting to hear. He also decided it might be good for me to go to a sleep clinic to see if they can help. The appointment for that came through really quickly and I have just had to go to bed with a sleep machine monitor on and am not sure what they will get from it as I spent most of the night awake. Not sure what I will get from either but I will try anything. I do a lot of swearing under my breath (and sometimes out loud)this helps and have also started to meditate which seems to help a little but it has to be quiet for this. Have you asked your GP to be referred to a pain clinic? I had to be assertive to get referred which isnt easy for me but boy did it feel good after. I hope you get some help soon. Gentle hugs. Joolz.x

[tettridge]

Hi Sarah82

So pleased you have written how you feel on here. I know that although it does not really help, but it feels like at least you have tried something else and maybe, just maybe someone will help with some advice that can help.

Sorry I can't help with the pain or I probably would not be looking on this site in the middle of the night but I would be tucked up in bed asleep looking forward to something normal people (without pain) look forward to do.

I have had cervicle spondylosis since I was 28 and I am now 64 and I have had three operations on the neck which have left me in more pain than before the operations, the pain is different but now it is worse in different ways. I also have the normal stuff that we all seem to have on here and we would all love to have an answer to the pain.

What I can offer is the chance to let off steam, to tell us how it is and how cheated we feel at having our lives turned upside down.

My family sort of shunned us (my wife and daughter and myself) for not going to a party after our grandson and great grandsons christening. but after seeing how ill I was in hospital it has changed them and made them realise my wife and I are unable to do things like that anymore and my daughter is looking after us the best she can.

Sorry getting off track but you get the idea, we can rant and say our stuff and there is always someone listening, not always someone who can help and so does not answer but there is someone reading this who knows how you feel and we will all say don't do anything that could be final.

In a clip by Robin Williams he says 'Suicide is a permanent solution to a temporary problem'

I know how difficult it is to reason when things get bad but I am lucky that I have a loving wife and a daughter (she has some special needs) who would flip if I did anything permanent, so that puts a spoke in my wheel when I think about it.

Sorry for rambling on but we are here for you for when you feel low and you can let some steam off to us.

I know I waffle but my only intention is to help you to take your mind off something even worse than my writing.

The kindest of regards

Terry

[CharlotteJane]

Fentanyl patches - my mum was in such a state, everything you described above was how she felt and she was on some pretty heavy meds which of course, seemed to do nothing. These patches were only given when she changed her gp as they're known to be stronger than morphine patches. Honestly try/research this suggestion because she's only been on them a few days and she says she has no pain what so ever (the first 12 hours she had sickness though that was expected) in the long run they are worth looking at because I was finally able to give my mum a squeeze and she's moving around almost as if she's never had fibro! All the best of luck!

Mother is currently suffering at 45.

[TheAuthor]

Hi sarah82

I am so sorry to read that you are suffering so much with no feeling of hope left in your life. I want to assure you that there genuinely are new avenues that can be explored. I have listed some ideas below and I hope that you find them useful:

Keep trying different GP's at your surgery? If this fails, register yourself with a different surgery?

If you find a GP that will listen ask for a referral to a Pain Management Clinic? Ask about what medications are available that you have not yet tried? Or research some for yourself and take suggestions with you to your appointments?

If you feel really down and depressed, ring the Samaritans and open up to another human being?

Here is their phone number, they are there 24 hours a day 7 days a week: 08457 90 90 90

Have you considered joining a Fibro Group? Everyone there will know exactly where you are coming from and what you mean? I have pasted two links below to Fibro Group Directories:

fibroaction.org/Pages/Suppo...

fibromyalgia-support.com/su...

I want to wish you all the best of luck with finding the answers that you so desperately desire and deserve.

All my hopes and dreams for you

Ken x

[LC74]

Hi. Not sure if you have tried these but I went to Holland and Barratt and spoke to someone very helpful. I am now on Co Enzyme Q10, MSM and Super one formula. I also take amitriptyline and paracetamol. This is the end of my first week. Apparently it can take up to 6 for the H and B stuff to start working.

Please get referred to a counsellor about your depression. It's a terrible terrible illness on its own, never mind adding fibro into the equation. Please know that you are not alone. This wee community is very supportive and we are all here for you in whatever small way we can be.

Hugs

Lisa

Xxxx

[Jjudith]

Oh dear poor you what a terrible time you are having. I can only write about my own experience - which is that all medicines of all sorts seem to in some way affect my fibro/myofascial pain/interstitial cystitis/irritable bowel negatively, so I have had to manage without any medication, although I do take Clonazepam once a week for one reasonably good night's sleep which helps a lot. What I found was that when I stopped fighting fibro and accepted into my life and just asked, what can we do to live together? it seemed to help me accept my body as it is, and the depression and desperate feelings went away. I also did a meditation course early on after my diagnosis and I still practice it now maybe 3-4 times a week, more if I am feeling down for some reason. It doesn't help the pain but it helps me to feel that I can accept it, which somehow makes it less intrustive on my life. I think some people benefit from coping skills courses in the same way.

For pain relief I use massage and trigger point massage which I have taught myself, which means that I can treat my own body when it hurts - I use a book by Clare Davies called Trigger Point Therapy workbook which taught me how and where to do it. For me, it was like magic. You can maybe see if you can find a trigger point therapist or see if your GP will refer you to a physio who uses trigger point massage. Twice a week I have a long warm bath and then massage my body and go to bed early and watch TV or listen to my talking books. If you have pain all over, it will take time before massage works, but it WILL work. For my face pain I saw a dentist and got a face frame, which was also like magic for headaches and face pain. I also use heated or cold pads for pain, cold for bladder pain, warm for every other pain. I also did an Alexander Technique course which helped with my posture, and that helped a lot with the tingling. I also use specific exercises and stretches for maintenance and in the case of my shoulders, for return of function, and I go to yoga and pilates and do what I can. I can walk reasonably well and I go for a walk every day. For my bladder pain I use Interstitial Cystitis diet and a dietary supplement called Cystoprotek. For my irritable bowel I use Activated Charcoal. For sitting, I use a kneeling rocking chair that I got from a company that specialises in back care. I also have a mirror foam mattress that is helpful in keeping me free of pain at night.

For lack of sleep, I use my talking books to distract me. I have them downloaded on to an ipad and I listen to them at night through earpieces, so my other half doesn't hear it. I wake and listen to the talking book, and then I doze and go back to sleep for a while. I find that if I don't get anxious about not sleeping, then I feel much better the next day, almost as good as having a good night even if I have only had a few hours sleep. I have to listen to the books over and over again because I always seem to miss the same bit of the story and it sometimes takes me weeks to complete the book - I have listened to the sections in the wrong order so I have to put them back into the order in my mind. Occasionally I get a story which is so exciting or amusing or heart-string-pulling that it keeps me awake rather than sending me to sleep!

I know it was easier for me because my children were grown up, I have a supportive hubby and no financial problems when I was diagnosed. I know it is more difficult for someone who is younger with more responsibilities.

But the main message I am trying to tell you is that if you take control of your body, rather than the doctors and the fibro taking control of your body, your fibro will improve and your quality of life will improve. That does not mean that you will give up on the doctor completely, or on medication completely, although I do have a friend who was just like you and gave up everything and she still has pain but feels better. That does not mean it is right for you, but it shows that people can find their own path and come to terms with this disease.

Love to you, and hope you find your own way soon, I am sure you will. Hugs x

[kauto]

I have had Depression for most of my life but only taken seriously for the last 16 years but I was hiding the way I felt with drink not a good idea anyway they got me on Venafaxine after trying others but Ven.was the only one that worked. also with the fibro hid the pain with drink but after breakdown stopped drinking an went on tablets none of them worked on there own but when they gave me co-codomol and gabapentin to-gether that did work they have had to increase dose of both over the years to keep pain at a livable level,i have also been on over the last 5 years Oramorph 3 times a day so try and persevere with doctor and keep telling him of the pain you are in I aso take 1 sleeping tablet a night but that was prescribed for me 16 years ago when I had my Breakdown but that only guarantees me 3x4 hours a night but it does help me drop off quite quick which is a great help I would keep on at your DR. to see if he can give you mild S.Tablets hope this helps xx When I get headaches have to take panadol has my painkillers don`t touch it lol xx

[mitziblue]

Bless your heart!!! Could you go to a pain clinic? It sounds as though that's your next step. There are medicines out there to easy your suffering. If your doctor won't help you please find another one!!! Life is to short to be suffering the whole time. Plus if you get your pain under control your depression should easy as well. This illness is horrible and depressing in and of itself!!! Hang in there sweetheart, let me know how you are doing. xxx Mitzi

[dawnlancaster]

oh hun I no what your going through just keep your chin up and come on here plenty people to talk to X

[Scouser58]

Hello sarah82, you definatley need to get into the doctors as all the drugs you are taking, they will not be doing you much good. Let us know how you get on having a review, maybe your pharmasist can help you with that and give you some guidance. ttfn