New to the site

Hi everyone,

I am new to this site and not sure what to do yet! I have been diagnosed with Fibromyalgia and I am in constant pain. I am tired of people not understanding the condition and having no idea what I am going through, that is why I am here! To talk to people that understand how awful chronic pain is and how life limiting it can be! Any advice on the site would be appreciated and also it would be nice just to get know everyone!

Thanks!

17 Replies

oldestnewest
  • Hello americaninengland, hope you are finding the UK a good place to be. Constant pain - I think we can all empathise with you when you say no one understands what you are going through, no one ever will, sorry, but that is a sad fact about chronic pain. It is good to be able to come onto a site and hopefully meet people who can listen and support you through the hard times and the worrying questions about pain and why no full pain relief ever seems to be available. It can help just to know you are not alone, and not being just dismissed as a moaner by the medical people and those around you. Friends vanish, social life is gone and very often work is not possible, all you have is pain and pills - and pills to counteract the side effects of some of the pills you are taking. It is not life it is existence. Some will agree with me, others will disagree, even chronic pain is a debatable subject - naturally as we all come from different circumstances, have differing levels of support and we express ourselves in differing ways. I hope you do find help here and can at least take some comfort from the plain and simple fact that you are not alone.

    Cee

  • Yes I agree. I saw a friend I hadn't seen for two years and said I was sorry I hadn't been able to before and she just said 'what? you've been sick for TWO years? I felt like saying nearly 32, but the last two have been bad! To be fair, im not friends with her anymore, and it was my decision! I am lucky enough to have periods where I am more active than others and these tend to get me through the bad times. During the bad times I really feel for people who do not even get the relief I manage to get, but as you say, no one can feel someone else's pain for them. A doctor actually said to me, 'you cant be in as much pain as you are saying?' I will not repeat what went through my head at the time, or I will be banned from the site! She actually had a back condition and had to have time off work, frequently, with it, but it appeared to make her more angry that I couldn't put a label on my problem. I will forgive her as she may have been in a lot of pain at the time and it can make you less patient and ratty! Another one said that I couldn't have painkillers I had asked for as they were highly addictive, but I should live as fuller life as possible. Hey ho. I have a fantastic GP practice now who helps me when I really need the help by giving me painkillers but not simply handing them out like smarties. Its taken 30 years to get there, but I am finally feeling a bit more positive about the future and really hope others don't have to wait as long as me.x

  • Welcome americaninengland

    No 2 people with the same disability are equal and chronic pain is even more complex.

    People can sympathise with a broken leg cos they can see you have something which muct hurt. But pain is invisible. It isn't that they don't care but it is that they have no idea how you feel. {ep[;e by nature asj you how you are but don't really want chapter and verse. It makes them feel uncomfortable.

    Here we all say how we feel and there are always others in similar circumstances. And not forgetting everyones pain threshold is different.

    David broke his back, has 2 degenerative diseases of the spine, Burtritis,, reactive depression, CPD, and more I can't remember. Sort of copes and manages a gentle but painful life. Gets the tiniest of spinters in his finger and he is off to A&E for major surgery!! Well he would if I let him!!

    Enjoy, if that's not an odd word to us, yjis forum. You are amongst kindred spirits here.

    Par x

  • Welcome to the site. I'm fairly new to it too but unfortunately I did not introduce myself properly as I waded in! Everyone is extremely helpful and there is a wealth of expertise on here. I hope zanna comes on with her alternative take to pain management which I broadly agree with. My own fall back remedies include - tens unit, acupressure/acupuncture and therapy called healing touch which is fantastic. Biofreeze spray is good. but all my helpers target specific areas whereas fybtomyalgia is wide ranging? I try to keep moving, it's important for all other bodily functions. I'm interested in the thinking of Dr John Sarno in his books about pain and the role of the brain and he discusses fibromyalgia too. I don't take meds any more. The pain at least was reality, horrible though it can be. Its part of me now. Sometimes I take Disprin Direct. Good days are there. I have not lost friends, family or social life, well, maybe some social life!!! I do try not to go on about it and I am better at that but early days I never stopped ! Don't know how people put up with me because its not really something you can share. Except perhaps on here. All the best!

  • Hi there. Welcome. This is a really helpful and friendly place. I've had pain for 15 years and haven't found a forum like this before. Stumbled upon by chance and found really helpful people, advice and support. I just looked through all the posts when I joined and have just joined in myself. ;)

  • Right on cue, calceolaria, I swear by alternative therapies, positive thinking, problemsolving, engineering your activities and environment to reduce physical and emotional stress. Every negative has a positive - it might just take a while to find it.

    Hi, americaninengland. Everyones pain is different, some things work and others don't. I'm still enjoying my journey with pain 11 years on. (not often you see enjoy and pain in the samne sentance). Its given me artistic talents that probably would never have surfaced. I live life at my pace and others can choose to join me or not. My time is precious because sometimes even simple things like getting downstairs can take 20 mins. I'm very choosy about what I do and with whom. I've met so many wonderful, helpful and supportive people in the alternative therapy world. They have enriched my life.

    The first stumbling block to hurl yourself over is acceptance. How can acceptance be positive? One way is to say this is me now. Now is relevant because I live in now. The past is history and the future is unknown, both cannot be changed although you may be able to influence the future.

    My aches and pains have names and I talk to them mostly acknowledging that a certain activity will cause more pain, thus giving them permission to do so.

    Meditation and mindfulness are wonderful to defrag the brain, banish negative thoughts and all the what ifs. Both need to be learned, but once mastered can be applied to any situation.

    Friends soon sort themselves out into those who are genuine supporters and those who are not. Quite often its not who you think. As in facebook, rationalise your friend list. No-one needs someone who is thoughtless, overprotective or thinks they know best. They drain precious energy.

    I am very vocal about my ideas, methods and ways to make life better. There are posts all over the site, so rather than repeat myself, maybe take a wander and find some. Unfortunately some people have been upset by some of my posts, and I am very sorry they took it so personally. I can only comment on my experiences, and encourage others to try. I know what I do doesn't help everyone, and I know some people have very little choice but to take meds. But pain shouldn't stop you doing things, or enjoying things. We only have one life. So enjoy it.

  • Thank you all for your comments, I don't feel as alone as I did before I posted! I will take all suggestions on board as well!!

  • Hello Americaninengland,

    I am so sorry to hear that you are in such terrible pain.

    A friend of mine has the same thing ,

    and it really must be awful .

    I do hope your Doctor finds a good medication for you,

    I myself feel a lot better these days, I have found a new hobby,

    I am thinking so much about the new hobby,

    that I am forgetting a bit now about the pain.

    I would advise you to try to find a new interest,

    it just might help a little,

    Take care of yourself,

    and steer clear of stress if you can.

    Thinking of you,

    Rhapsody .

  • Hello Americaninengland

    As you can see from all the above comments we all know what chronic pain is, but none of us can share your chronic pain or understand yours. We know what it does. There are phases to dealing with it. Its a journey where you learn how to grab the few moments when the pain is less.

    I practise Buddhist Mindfulness, Alexander Technique, T'ai Chi. I recieve treatment from a McTimony Chiropractor on the NHS. I do not take any medication.

    Study what your body does. Notice what you do which makes the pain less and what you do which makes it worse. Dealing with pain is work. You are working to find actions which remove the slightest bit of discomfort while recognising that sometimes you will need to do something that will generate discomfort. The book of Job in the bible is a useful item to read. I am not a Christian, but Job's surrender is a key to handling pain.

    Part of pain is the emotional reaction to it. My old zen teacher referred to being able to dance in the fires of hell and not be affected by it. My most vivid experience was in a session where her students sat in circle and one after another asked her advice on something. I ran though the issues concerning my pain. As I voiced my situation my emotions began to tear me apart. I heard this voice from the Zen Teacher which commanded: "Stand up straight." I did. All the turmoil which I had a few seconds before went.

  • hi, i have had FM for many years but it's only recently been recognised by GP's,the problem i find is that the pain moves around,like today it's mainly my hands and ankles,tomorrow will be something else.i tend to use gabapentin supplemented with co-codamol.also i use breathing exercises using my diaphram to increase the oxygen going to my various bits,this helps me a lot because it increases the circulation of blood to the joints and tendons. this site is very good we all have severe pain here but with other users suggestions and advice we are all helping ourselves which in turn makes us feel better and we are are part of a very exclusive group,we are the elite,so join us and be welcome.good vibes to you su

  • What a great group of people on here! Words for me to learn and live by!!! Sulimbi, I also have the same problem where the pain is in a different place every day! I am a hypnotherapist, so I use alot of hypnosis techniques to deal with the pain, but I find that talking about it helps alot - so thank you for listening!

  • I found this whole thread intensely moving and with a powerful spiritual overtone. I felt a stab of recognition at johnsmiths Book of Job reference about submission to pain. Religious or not, the Bible still has much to teach about good mental health.

  • We ought to request a 'like' button. ;)

  • Great idea, Boozy!

  • Ive just joined this site but suffered with chronic pain for 30 years. As you can see, we all deal with it in different ways. I am sorry you have this condition, and I do not mean that to sound negative or patronising in any way, because I really wish you and the others on this site, didn't! We all have good and bad days as I am sure you know. What keeps me going through the bad days, is that I will have better days, simple as. I also do take a lot of painkillers. I know there are not for some and come with side affects, but I have tried without them and to be honest, for me, I have a much longer flare up if I don't. I used to beat myself up about taking them and feel I should be stronger. Now, I don't really care what people think. No one can measure another person's pain. Im sorry that people don't understand your condition. This can sometimes be (nearly) as bad as the pain itself as it is so frustrating I know. You say you have recently been diagnosed, so it will be a bit of a learning curve for you to see what works, or doesn't for yourself. You have probably suffered a long period without a diagnosis, and felt like you were going mad! At least there is one thing, that you have a diagnosis. Not much help with the pain, I know, but at least you know your not mad! Its really difficult for others to see us complete tasks on others and then the next day not be able to move. If I didn't have chronic pain, I wouldn't understand it. In fact, I still don't! One thing I do find very frustrating is when doctors deny your pain exists, especially if they cannot find a specific physical reason and they don't have 'tests' to prove it. Some areas have groups for people who have low mood specifically related to their pain. You could see if they have any in your area and give it a go, nothing to lose. Although, no one can literally share your pain, they can help to lighten the burden and load, at times you find particularly hard. I hope everyones kind words are of some help and wish you all the best in the world at finding relief and having more good days than bad. Take care:)

  • What a great post Lesley! You're so right on! I might add that doctors near me (Michigan, USA) tend to try and tell me/us that we have pain BECAUSE we are severely depressed when in reality it is often the other way around. I believe I would MUCH happier and hopeful if I didn't have to deal with this day in and day out for years on end. It drains a person mentally, especially combined with friends, relatives and even medical staff who just don't understand and tell you to go do aerobics (HA, RIGHT!! Maybe if I could MOVE to do them...), that we're just overreacting, we're lazy or making it up.

  • Hello American in England :) I'm also very new here (and just realized it is a UK based site so hope that I can still hang out). I have Fibromyalgia also (dx in 2008) among other things. People simply don't understand and can be quite vicious. I think the worst kind of disabling condition is one that isn't "visible" to others. There is a blog post or something floating around the Internet called "The Spoon Theory" and sometimes I direct people who don't "get it" to read that. I think it's a great analogy.

    I am still trying to find the best pain relief options. It is never totally "gone". Some days I can do more than others, some days I'm in tears all day even with a very high pain tolerance. It wears a person down to have continual pain - and that affects us emotionally and mentally as well. Most of the typical drugs didn't work for me and caused extremely terrible side effects that were not worth it. I don't even know if I can remember all the things I've been on to try...there was Neurontin (same as Gabapentin), Lyrica, Cymbalta, Tramadol, Nortryptyline (I don't know how to spell all these for sure, sorry), LIbrium, Flexeril, Naproxen, Vicodin (I still take Vicodin - but need increasingly higher doses to help take the edge off)...and just had my first Lidocaine IV infusion. Also tried marijuana which DID help with the pain a LOT but I cannot stand the taste or smell of it!

    I am learning herbalism (slowly, my brain doesn't function real well anymore, can't "focus" for long, and memory is now terrible) and hope to find more natural alternatives that actually WORK. When I think of all the drugs I've put through my body since 2008, it is kind of scary. I have had Reiki which honestly DID help quite a bit (you can laugh at that if you like and I won't be offended, I laughed at first too), but I cannot get that very often and don't know how to do it myself.

    It can be difficult to find support or even a doctor who takes you seriously. I hope that you find both, along with pain relief. :)

You may also like...