Any advice please

Hello all I'm new here and desperate at the moment. I need help for the pain I'm in but the docs seem to think alls ok. I work but because I'm stubborn I pretend that alls ok to the outside world. But its not any more, sorry to be a downer, I'm not sleeping, loosing weight because its too much to eat, pain so bad that I can't stay still or move about if you know what I mean. I'm on gabapentin, tramadol, paracetamol, naprosan, and amatriptyline plus every 6 wks I have an infusion. I'm telling the docs that I need to change the meds as they don't help any more but its like "just go away take your meds and shut up"

How have others get the help they need to lessen your pain, the other day I was "meds don't work for 'people like you', go home and have a hot bath" I walked out of there in tears of anger, frustration and pain.

Thankyou

33 Replies

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  • That's terrible treatment, mis-treatment! The meds you're on are the same as many sufferers with FM. It is true that there is not yet an established understanding of this condition, but there are too many Dr.s like yours who don't want to know what they don't understand. Recently there has been info. from America, suggests it's a Neurlogical disorder, and from what I've read I totally agree with it. Earlier today I read an article posted on here by a member, which I think might help you. I'm going to see if I can find it, & i'll be back in a few minutes. Oh, if I were you I would try to find a new GP. Also, I use Duloxetine, which helps FM. Take care, be back in a bit.

    Tulip xx

  • That was quick. Member Regnofibro is in general pots just under yours. Click and it should show you better than I can describe. I feel for you, very much. Tulip xx

  • This is exactly my point why i won't take any more meds! Because it's not working for us! My god, you sound in an awful state! Hope you get some sleep tonight. We can all pretend to be ok when we go to work tomorrow. ..lol 😊

  • I wish there was something I could say that would help you! I really don't think doctors know how to help. Some try others just shove meds at you. No one should be treated as you were. I would definitely try to change doctors! And report that one!! Hugs

  • Once I went to doctor and asked to be referred to a dietician because I'm a bad water and don't eat properly. Also because I have diverticulitis and a mild form of IBS My tummy suffers ... And she looked at And without a minutes thought she said " come on , even I know by looking at you that you aren't kidding anyone that you are not sitting pies and crap all day. For god sake you are a grown woman start cooking healthier meals and eating better and it wouldn't do you any harm to exercise"....

    said but there are lots I can't eat that's why I am asking for help and she said " no I'm done here just go and try buying fruit and veg instead of pies ...

    I walked straight to reception and said put on my notes I never want to see that woman again and told her why. And walked out in tears ... When I mentioned it to another doctor at an appointment he half heartedly laughed and Said she maybe could have said it a bit better but she didn't mean tone nasty.

    I gave up asking lol xx

  • I am so genuinely sorry to read that and I sincerely hope that you can find some resolution and relief to these issues. I would personally either visit a different GP or find another practice whereby they are more liable to listen to what you are telling them.

    I want to genuinely and sincerely wish you all the best of luck.

    All my hopes and dreams for you

    Ken

  • Where do you live ? I am in USA and there are lots of meds that will help.

    Over the counter pain patches (Salonpas) and pain ointments, lotion and creams help also. You need to find new doc, one that understands Fibro. Have you been diagnosed?

  • I can't believe some of posts I am reading from many people about the lack of understanding and knowledge on the part of their doctors about Fibro.

    Please Google Fibro and print out everything you can find that talks about what it is, symptoms and medications that help. I am soooooo sorry you have to deal with rude docs that won't prescribe actual pain meds that work. Arm yourself with knowledge and maybe mail a copy of any article you find so they can work with you to get some relief.

  • Iv found that being really honest about everything and dont leave anything out helps.medication will only help and not get rid of pain you need to help yourself also I needed a kick up the bum then I started looking further afield my mindset how can I help myself started looking into mindfulness then chrystals then healing and meditation I read loads when I never really read before I wasnt letting it beat me I learned a lot it was interesting

    I was doing nothing anyway feeling sorry for myself I realised I was grieving because I wanted to be the old mary, but she was in the past and this is now, I find yes meditation when nothing else works I imagine the pain and throwing it down through my feet out in the earth then putting feeling great where the pain is it really works most of the time well I dont care what I have to do ive done everything to ease the pain every position and I dont care what anyone thinks, I get positive feedback from family friends professionals yes you have to be a bit mad believe me it works try and let me know how you get on

    mary

  • sorry to hear you are suffering :-(

    nhs is not great for chronic illness...

    I'm curious, what is the 6-weekly infusion that you have?

  • Firstly I am sending a huge virtual hug! :)

    My advice would be:

    - Find a new GP, keep trying one until you find one you like.

    - Ask for a referral to the Pain Clinic - that's like gold dust!

    - Try a TENS machine

    - As someone mentioned, Duloxetine is worth trying. It's an antidepressant so should help with your mood too.

    My Pain clinic told me that I must stop taking Tramadol every day. It actually makes fibro worse - can't remember why though! Now I have stopped taking it (after a horrible 6 weeks of withdrawal) I feel much better.

    I figured out that exercise (dancing, jogging to catch a train etc), sitting on hard chairs and standing up for more than 10 minutes cause my flair ups. Since I realised that, life has been much better.

    Lastly, if you can afford to do it privately then counselling/talking therapy is amazing. I think everyone in the whole world could benefit from it.

    Take care xxx

  • That's odd, my pain clinic doctor put me on slow release tramadol twice a day. They all seem to do things differently, how are we supposed to know what's best?

  • Very true! I think the answer is they don't know! But she did tell me that they don't know how bad the long term side effects will be from Tramadol as it's morphine based and that was only originally used in terminal cancer patients. Scary eh??

  • I use morphine based drugs daily about 3-4 times a day. Without it the pain is intolerable.

    I've tried acupuncture and therapeutic massage it was relaxing but didn't really help.

    Nothing really helps except complete rest.

  • Your DR could refer you to CBT as that has had good results on long term chronic illnesses.

    It sounds weird but light massage also works for some.

    I am blessed with hottub its above hot bath idea as bubbles massage body.

    Have a chat to pharmacist on meds he/she may have ideas.Sometimes less is more!

  • Has the your GP referred you to a Rhuematologist? xxx

  • Hi sounds awful. How long have you been taking so many meds. My doctor was the same at first when I told him that I fibromyalgia. But after I had to call him out as I couldn't get out of bed he seems to understand. I have found a relief well if it only for a while. Morphine patches. Also you must try to persevere with the meds. Have you seen anyone else. I am under the pain management. well I hope that you get it sorted out soon

  • I was very lucky I went to see the GP and there was another doctor on. He was fantastic and said what I had gave me medication for it.

  • Hello S-J-C-T

    There is hope. There is help. You are not alone. Hang on to these facts.

    You have some good advice given to you here but I'm concerned that you don't seem to have come back. I hope you're not in a nasty flare? How long have you had FM? Who diagnosed you? Ask for another opinion or try another surgery, or both.

    It can take time for meds to help but the dosage may need altering too.

    I can't take tramadol as it makes me ill. I'm currently on Pregabalin but I'm in the process of coming off that with the help of my pain management clinic. They seem much more up to date with meds and say gabapentin also has bad side effects and that they have something else in mind.

    Did you know Tegretol can be used? I take it for epilepsy. I found Fibromyalgia for Dummies helped me a lot even though I'm in the UK and its USA based. Lists lots of meds, their side effects etc. it also helps with questions and talking to family.

    I am also on Amitriptyline but only take it in the evening as it makes me sleepy. Still it helps with the weird sensations I get in my legs.

    My TENs machine was so helpful when my back spasmed I bought a second one for upstairs/work.

    Does work know? I wish I knew what country you're in. In the UK if you cannot get in to work or be in work you can contact Access to Work and they assess you and work, helping them understand your needs. Having them and my Union on board made work helpful but cautious to ensure they were seen as doing all they can. It's been a three year battle, but things are so much better for me there and generally.

    I've had times when I thought I'd have to give it up, but I've just completed a full year of virtually no time off and I'm back with a clean slate - no more warnings of too much time off, you'll have to go!

    Meditation also helps strange as this may seem. What it does is as your body over reacts to pain and many muscles tense up causing you more pain, it helps you release those muscles so you can treat the source area. Let me give you an example. The other week I was having a shower. I decided to sort out my lower leg, leaned forward and twisted. No more than normal, but my back did it's strange 'ripping sticky toffee apart' feeling, which usually means pain for days, when extra pain meds and my TENs machine are the only help! This time, having practiced meditation for a while I decided to give it a go. I slowed my breathing and relaxed my muscles by doing this, whilst letting the shower focus on my back. It worked! No extra pain!

    Any meditation that talks you through can help but in this instance it was the meditation my sycologist recommended Mindfulness for Health which comes with a cd, specifically the one for pain, Vidyamala Burch wrote it. You might be able to get it second hand but it's not expensive and may help you. Persevere with reading it as it can be strange, but it takes you through step by step.

    Feel free to message me if you think I can help. However I'm not very good at picking messages up, although I will look out for a while.

    Be strong. You are not imagining things. You have every right to rant. You have every right to be treated with respect.

    Soft hugs

  • Med's are a Temporary Patch- good for 24 hrs only- any more and they damage the bodies natural system- Fibro turns normal "feelings" into pain reception. like, - when you turnover in bed, putting new pressure onto your leg, arm, waist, you'd normally feel that as pressure on the skin- Fibro tells the body that the "pressure" is actually hurting you- That's as best in layman's terms I can explain it- I've suffered since 1994 and found pain killers make it worse and are an addiction.- as I've found out myself- Take any med's for the least amount of time- asking doctors advice to me is useless- been there done that.! Get the info you feel is correct about you and you problem, From Gov't medical websites--- (NOT GOOGLE.!)- take down what they say is best practice in med's, or whatever, go to Doc's place and NICELY say this is what you want to try- showing info at the same time- they respect me for doing the homework and knowing my own mind and body- while being in control of what is a steady demand for pain relief. The pain and discomfort won't stop completely, but it will slow or stop for a while, it will come and go mainly due to stress and lack of sleep- working hard won't kill you nor rid you of your Fibro, but working will give you a reason to get up even though you don't want to- and more importantly, stops the self pity we all suffer from- which leads to depression. Only you know your pain, only you can sort it out- no-one will hand a magic pill, nor a one stop answer- trial and error is the name of the game, but hard evidence and research by you will go a long way- regards, Karen.

  • Well in my experience doctors either don't know what to do with us in general or they don't care . I have a lot of different things wrong with me but I hardly ever visit the doctors because what's the point .Sorry to be so negative but I really can see what's going on with you. One Dr put me on naprosan another said it was no good for pain . So wish you well on your journey and I hope you get some help .

  • Just been to docs today after a week-end of near suicidal pain. He's increased my pregabalin to 300mgs a day and to go back in a month. He's not keen on painkillers such as Nexium because they increase blood pressure so only taking paracetamol for extra pain relief. At least he's started to listen to me. I think it's disgraceful the way you've been treated but many people even medical professonals are sceptical of FM. I don't moan about it and just get on with it so many people think I'm OK. I'd complain and demand to see a rheumatologist if you've not seen one already. Good luck. xx

  • I am so incredibly sorry that you are going thru this!! Even without reading the other replies, I will tell you what I think and some suggestions that may help. First of all..... I urge you to look for a different doctor who is knowledgable about fibro and acknowledges it is real and quite debilitating..... and not 'in your head' !!! We don't have to battle the condition AND our doctors!! I have a whole team that is working together and it is wonderful!! Also.... I was on gabapentin too.... 3X per day. It really didn't help me very much!! I was switched over to Duloxetine.... and I have had great success with that!! It really helps my pain..... AND ..... it also helps with depression and anxiety. I take one at night and one in the morning utbecause it can cause drowsiness.... which is less if you split up the times. That is the only one that I take for pain. I know many people aren't fond of this.... but exercise is very helpful for pain!! This is not easy for me either.... but doing some cardio activity, strengthening activities and then stretches are what you need to do. Swimming is also excellent for fibro!! I go to a PT center that has a heated pool and it is..... dreamy! :) Do not be surprised that your pain increases in cold weather.... so if you are from the UK.... I can see where you could be in pain year round!! :( Also.... for fibro and for weather.... make sure that you are getting enough Vitamin D !! I would consider getting a VD light box to use!!!......more later ..... taking care of grandbaby!! :)

    Also... be sure that you are taking enough Vitamin D !!!

  • Thankyou all for your responses and sorry for the delay. Brief history im in the UK and i was finally diagnosed about 7yrs ago after waiting 6 1/2 yrs for the diagnosis. I'm 40. I currently take or am ment to take

    Amitriptyline -50mg at night to get a Restful' sleep,

    Gabapentin -1500mg,

    Naproxen-1000mg,

    Pazracetamol-4000mg,

    Tramadol-400mg

    All at set times for the day but I want to come off the tramadol with it being addictive, over the yrs all they have done is increase the meds or add news ones to them. I have managed to half the tram by my self.

    I'm lucky that i don't suffer depression, my day starts at 4 30 to see to the horses its takes me about 2hrs where it used to take 40-50 mins. I have not been able to ride my horse for over 2yrs, but due to the fact that she was rescued starved and beaten ill never leave her, she has seen me on crutches, supports me when I'm on a wobbly day stayed with me when I've fell and on e even run back to the yard (like Lassie) when I passed out. I'm at work at 7am and up till this pasted Friday valleted upto 28 cars a day purely because needs must. I'm just about to change jobs on weds because I physically cant vallet any more.

    I do live in constant pain but until a flare up I do carry on,

    I went to the docs thus morning and saw yet another doc and had to demand to be told who my 'specialist' is as I've never seen them and then passed out in the car park. I've been knocked out for 7hrs today and even though I needed the sleep I hurt as the pressure of what ever body part comes into contact with the bed hurts.

    The only appointment the is available to see the specialist is ----wait for it-----November 11th!

    I'm stubborn and strong willed and refuse to roll over all I ask is for some help with the pain to allow me to keep going, I'm a strong believer in herbs, crystals, reki, massage, fresh air (with a sea breeze ((I WILL one day move to the coast)) but I cant meditate I always end up arguing with my self.

    I try not to let it interfere with my home life but even though my partner is learning with me there is no love life because of the pain which does add pressure I hope that doesn't come across as crude.

    I'm based under the Scunthorpe hospital which is erm ....well.....lets leave that there

    I also suffer from migraines, M.E and chronic fatigue syndrome.

    Gee this sounds so down but hayho if you can't laugh at yourself then you don't have the right to laugh at anybody else.

    Yours hopefully Sarah 😊

  • First, don't worry about sounding down, Sarah. There are enough of us to lift you up when you feel like that. Before you even think of doing anything else, get a new doctor. Yours is an idiot. Here in the States, some people are seeing Neurologists for fibro. After going from doctor to doctor with all of them telling me that there was nothing wrong with me and sending me home, a friend of mine told me that she worked for a doctor who was the one that doctors send their patients to when they can't figure out what's wrong with them. It took him about 1 minute after hearing what I was telling him to start asking me questions about how I was sleeping, how tired I was, etc. and then he came over and started pressing on certain parts of my body asking if it hurt. It was like razors every time he touched me. I had excuses for why I hurt in one place or another...stress, tension, etc. Then he lightly touched me on my arm and told me that it was the same touch he had used on the other spots...and told me I had Fibromyalgia. I said "isn't that what they tell you when they don't know what you have?" And he told me that maybe that was the truth in times past, but now they know it's very real. Unfortunately, he told me, there is no cure. (On the other hand, I was overjoyed at just having a diagnosis at last.) My doctor likes to start at low doses and work them up if needed. I wound up comfortable at extended release Tramadol 300mg. I am not worried about getting addicted. It's the minimum I need to cope with the fibro. He gave me amytriptyline, but I requested something else after I put on 30 lbs because of it. He also gives me a supply of oxycodone 5-325 for flare ups. I go through a prescription about every 3 months. For several years I was getting a very light touch massage every week and that helped tremendously. I can't do yoga and stuff like that because while I feel great in class, my body boomerangs and I'm crawled up in a ball in pain a couple of hours later at the beginning of a flareup. I also have trouble with meditation, but have found that both guided meditation for relaxation and other things work because you are listening to someone who is talking you into the meditative state, often by having you mentally engage in a story they tell. Try Meditainment.com.

    It used to be a paid website with some free meditations, but I understand it's all free now. Also, I find that hypnosis works. You don't have to go to a hypnotist. A great one is Joseph Clough and many of his sessions are free on his website. The rest are very low cost. The sessions are about 35 minutes. He can put me to sleep in two seconds and keep me there all night now. The more you use his sessions, the faster and easier it happens. josephclough.com

    I hope that some of this has helped you. It's what has/is helping me. Again, please never apologize for sounding down. You have good reason. But at your lowest, know we are all here for you, and get online and talk to us.

    I am a Reiki Master and am sending loving Reiki healing your way.

    Linda

  • Thanking x

  • unfortunately the link address to meditainment .com is not working. if you ever watched house the series he explained that he was addicted to painkillers but he still had the pain. i take trammadol about 12 hours apart have done so for 16 years unfortunately the trammadol only reduces nerve pain that little bit stops you screaming out loud so you can just scream quietly on the inside. so addiction is not the dirty word that some people think it is when you have a chronic condition.

  • I absolutely agree with you. My Tramadol is extended release, so I only have to take it once a day. It does keep the pain down to a dull roar....totally gone on some days. I just keyed meditainment.com and got through. Give it a try again. It might have been one of those famous glitches. Here is what was on the line when I was there: meditainment.com/ Let me know if you get through.

  • i got through this time thank you.

  • Ps the infusion is fenatonin but should be having lidocane next time, sorry for the spelling. xxx

  • Like tulips I also take duluxotine but I Los the slow release morphine tablets MST, 30 mg twice a day which really helps with physical pain. Some people take more but it makes me very drowsy to take more than this. It's trial and error starting on a low dose. I also have Oramorph for breakthrough pain relief. Not used every day just when needed. It's a life saver and helps me to remain active and have a much better quality of life. That last sentence is useful to quote to doctors as this is their main reason for prescribing pills. I am lucky enough to have a young, forward thinking superb GP. Be assertive, these guys haven't lived it and only learnt via books they have little or no training in fibromyalgia!

  • I'm so sorry to hear of ur pain and frustration. I often leave doctors in tears, they don't understand the amount of pain.

    Perhaps mention Shortec it's another good pain medication and it comes in all sorts of doses from low to high.

    Hope you feel better soon, there's nothing worse than pain and depression with tears and a doctor that doesn't understand or care that much.

  • Hi sarah I have messaged you think you live near me hope you ok as you not bin on since this post please get in touch as im worried over xxxx

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