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Do you live in worry
I live in fear,worry,anxiety. I am seeing a psychiatrist,did biofeedback,group therapy,and am going back to individual therapy. I also sleep a max of a few hours at night and that is not a joke even on enough sleep meds for a horse.I can go a few days without any. I know people say that is not possible but I will be up talking to a friend,can tell you a movie I watched,on the computer,etc. I live in fear about my health and worry about everything from environment,air,knocking myself,I could go on. I think because not just with the rsd pain but other health problems that may be connected of course so much has happened. It starts off as a small health problem that seems like nothing to turn into a long lasting painful experience. How does one get past the fears and worry when so much happens? I guess just looking for others experience. Thanks for listening.
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YES!! All the time...I totally understand how you feel. We never know when BAM! we are going get screwed with horrible pain because we did too much, the weather changes, etc. Its exhausting and unnerving.
There is a relaxation technique called "Mindfulness" that my psych taught me about. FMichael has also talked about it quite a bit, and I'm sure can provide a lot more info about it than I can. There are some really good books on the subject that can help and many areas have Mindfulness support groups. I used it all the time during my year out of work when I was the most vulnerable. Perhaps you could send a PM to FMichael and ask him for more info... Good luck...XOXO Sandy Quote:
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I do live in worry, to an extent and it has gotten worse lately, along with my health. Yes, the seemingly little problems that turn into ongoing nightmares are really trying my patience and often I feel that because I have so many different specialists on my roster, each one feels that another is solving the problem. Yet, nothing gets done, the problems get worse and multiply. It's so frustrating when you are trying desperately to restart a life and to constantly have physical problems jump into your path, to have people expect you to buck up and move on and yet be told that you cannot pursue things until your health is better managed.
I've accepted that my CRPS will not improve and actively try to alleviate pain symptoms, while still trying to maintain clear thinking through medication use. It's the complications that scare me: infections, exterior ulcers from cold/poor circulation, gastrointestinal fiascos of all kinds. And it scares me that I cannot find a medication that modifies pain without making me feel like a complete moron. Because of all these things, I worry that my youth has been wasted, my education will never be used for anything but good dinner table conversation, and that I will never be able to find and function in an intellectually, emotionally and financially satisfactory career. And the threats to my personal life worry me so that I fear my friends and family will become even more apathetic as time wears on. So yes, I have many fears now thanks to CRPS. But, I don't think about them in bed at night. I fantasize about a simple things I want to do (eg. shop through a market in Vietnam) and between that, my cheap and beloved sleep mask (get one!) and a change in sleep meds, I'm getting better sleep. Like you, I was only getting spots at a time. I've also started focusing pro-actively on my health, looking up nutrition, alternative meds etc. instead of constantly reading about CRPS and my other conditions. Spending more online time doing fun things like watching videos, emailing/messaging about non-health related issues and doing research on various topics of interest. The latter gives me better things to think about and perspective. I also switched my nighttime tv viewing to (mostly) comedic shows, skipping the crime and medical dramas. I hope you take some comfort in knowing you are not alone, and find ways to help yourself de-stress. |
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Excuse me for butting in; I happened to see this thread title while going down the list of boards. I haven't been getting much sleep myself lately (intractable pain) - averaging 2-3 hrs. a night for the past few weeks, and ocassionally a couple sleepless nights in a row (except that I'm not on any sleep meds). What you're describing - pain - sleeplessness - anxiety - depression - is well-known/documented as the vicious cycle. This brand of worry even has its own term - Catastrophizing: http://www.health.com/health/conditi...188528,00.html http://www.nutritional-supplements-h...-insomnia.html Others - Google: "vicious cycle" "chronic pain" insomnia anxiety It's exacerbating your health in a lot of ways you may or may not be aware of - It's gotta stop. Easier said than done? Indubitably. There are facets you cannot control (or cannot contol easily) and there are facets you can control, and it's on these that you should focus. Help is out there, whether from your therapist, support group, support network, or out on the web. Help, yes, but no-one can do it for you - you must do it for yourself and for those who care about you. I can't tell you exactly what to do or what will work for you; I can tell you what usually works for me: http://tinyurl.com/2c642oa whereisfunkytown also has some excellent ideas/advice. HTH, Doc |
Thank you so much for your replies though I am sorry that people can relate. It helps to feel less alone. First I do notice that when I have "better" days that are consistent the worry does lessen. Now though with pain being so high again,lack of sleep,and some personal issues worry is so high.
Sandy thank you for that suggestion. I will look into that. I have done CBT and then like I said biofeedback. I do know that I have learned many tools in my over 14 years of therapy but using them is a different story. I will look into an inperson group. I know those benefit me more then individual therapy. whereisfunkytown I can relate to everything you feel. I am sorry. If you want a pm friend I am here. I try to stay in the day but it is hard as you know. The rsd impacts every single thing. I also don't have proper pain control. My rsd doctors don't believe in narcotic meds so when my pain gets to the insane point I feel so scared because I almost feel I won't make it from the pain. I like your idea of being proactive. I was trying that for awhile with better eating etc but sort of fell of the wagon. Dr Smith you are not butting in. I appreciate your feedback. I do know the worry is making my pain worse and why I did the biofeedback. At the time I could bring myself to a calmer place but in daily life not. I will look at those links too. I do see that the way I am currently living is not right even for someone in chronic pain and health problems. I am beyond anxious,my mood is everywhere,I make very poor life choices I also am way too isolated. I live by myself,my family is far away,I don't work due to rsd etc. I think it is making things harder. Anyhow again thank you for your help |
Daniella, I use to live in fear & stress. So anxious going to bed worrying about what was going to happen next, how would i feel, will it spread. And we know that anxiety increases sympathetic nervous system which causes RSD to get worse. I to go for biofeedback and relaxation techniques. It was also suggested to begin a book of positive sayings, prayers, and favorite sayings. I asked friends/familiy and everyday i start by reading my book. Some were as simple as Dr. Seuss rhyme, like, Be who you are, and say what you feel, because those who mind don't matter, and those who matter don't mind, or people are like teabags, you don't know how strong they are until they get in hot water, or a bend in the road is not the end of the road unless you fail to make the turn, or one's best success comes after one's greatest disappointments.... Although my RSD spread full body i am not nearly as anxious as i was because i know stress and anxiety has been proven to make RSD worse. I do have fears but i am better at living one day at a time and appreciating what i can do instead of focusing on pain. I also consciously dont talk about my pain until the end of a conversation because i found people arent comfortable taking about pain all the time especially when they cant do anything about it(I know i was sick of hearing myself talk about it). I also got a puppy that makes me laugh and smile when i have a rough day(now 2dogs and a cat and 4kids). It is a good distraction for me and i have even started taking short walks with them which makes me get outside. If i dont feel well i skip the walk but must go out with them for at least 10min/day. My psychologist has recommended doing these things which has really saved me. Hope you find peace and less anxiety. momof4
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Google: crps "low dose naltrexone" Doc |
RNC you know when I took part at Cleveland Clinic pain program they did not allow us to talk about our pain in terms of how it felt physically. They said it just made the brain process it more. Now on a day to day basis I always talk about it with my mom. It is not good you are right and I am going to work on that suggestion. You know I was thinking of a dog. Now my mom though I live on my own would not be happy since I am not a dog person and why my pup I got which granted was 13 years ago lives with her. I feel so alone though so maybe I was thinking to try a foster situation first? I am glad yours brings you comfort.
Dr S I will look at that as well Thank you again. |
I choose.
To be worried, or to be happy and what? Free? Yea. I have no reason to worry, BIG DEAL, I got rsd, four discs, TOS, and more but I won't go on, I must say though , that all these give me reason to LOOK AHEAD! AND BE POSITIVE! While I won't lie, I cannot do so everyday. Today, however is one I can! Yesterday, was not, I was face down, but, still looking forward to a 'New Day' a 'New Life"~! WE can't get down on ourselves because of pain. We're not broken, We're Beautifully Broken! So MANY have it worse. When my Dr or his nurses ask me about my worse pain, my least pain, or my everyday pain, I can only say this. Lowest, about 4. Medial, about 7. Highest, (and they tell me, on a scale from one to ten, many tell them much Higher than 10! I think, how can anyone be so uncaring? Always, someone has it MUCH WORSE than us! I give them a 9.5) I'm , after 27 years of this, and other things, have difficulty thinking anyone with only rsd, could be SO selfish, even after seeing the suffering on TV, that they could rate themselves a 10+! I don't know, who do they think they are, but I'd suggest, that they count their blessings! That's what I try to do. Even at my lowest. Get out and help a church/synagogue/charity!!!!! You'll feel SO much better about yourself! Oh well, some will never get it. Peace on all, w/love, Pete |
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Hugz to all...:grouphug: Kathy |
Dear Pete,
Thanks for your reply.... But I must work to because I need the money and benefits for my family. Fulltime. And I have RSD and will need to deal with WC approvals/denials, lawyers, and all that related BS for the rest of my life. I will never be FREE of the need for ketamine infusions or some other treatment to keep me going so that I can work. And I need it on an on going basis, every month. There is no lawsuit for me to win that will garner any cash or benefits for my family. Ever. None of the disability policies I purchased like a responsible adult will pay me a dime because I was hurt on the job. I have no time to volunteer more than I already do (I'm on the board of 2 organizations already). Please don't try to make me feel bad because I have shared with others that I am scared of my RSD and my pain. I can certainly appreciate where you are coming from, and I'm happy that you have found balance in your life. But some of us are not as fortunate, and have chosen to share that with our friends. Peace Sandy Quote:
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I have always felt from my unreal about of therapy that one can't always shut off how they feel. Yes they can work on ways to cope with things better or be more proactive in life but a feeling is a feeling. No right or wrong ones. I also think some people have better outlooks in life then others. I am the first to say I don't have a good one.
Keep smilin I think you hit something that they were teaching me at the clinic I went to is learning to create a new life with rsd and find joy even though it is hard. We may not be able to do some things but can do others. It is finding that I guess. I agree this is such a warm family here. Sandy I give you so much credit. Having to work through this condition must be so hard. You have a lot on your plate and you are a strong person. I am scared too. I am just going to try to figure a way to live in a calmer fearful state. Aintsobad I think you have the outlook of being positive that I don't have. I know there are people worse and I feel for them truly. I think regardless though of someone else being worse or better this condition impacts ones life so bad. I often say things can be worse but it does not take away from the suffer now. |
I suffered from anxiety before my injury, but it became significantly worse afterwards (I've actually been diagnosed with PTSD as a result of it).
Of everything I've done, the therapy definitely has helped the most, along with really becoming proactive in my care. It's still a struggle, though, I won't lie. I have medication I can take for panic attacks, but the techniques I've learned are usually successful in helping me to calm down. I've also modified my actions, i.e. - I don't go into crowded stores, try to keep my bedroom very serene/uncrowded, those types of things. I suffer from the "vicious cycle" that Dr. Smith referred to. I've been unable to beat it, but accepting it DOES help me somewhat in that I know I have a good day coming around the corner. (And if you wonder why I didn't answer before, it's because I couldn't have answered this cheerfully when I first read your post the other day. Trust me, I'm NOT this positive all the time, just keeping it real! :cool:) |
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Acceptance of our illness means taking ownership ...including every each and step of it's spreading... So please, try not to be too hard on yourself... I can hear my sweet departed Mom saying that to me..So, this advice holds a bunch of merit gently wrapped up in a beautiful package topped with a loving bow!!! Hugz, KS :grouphug: |
Can so empathasize..
I'm newly diagnosed and just beginning the nerve blocks (this Friday). None of the pain, nerve meds have worked so it is scary. I live by myself, no money saved and I must work ( I do have disability if I chose to use it I guess). I just recently started doing Jon Zabat Kimm's tapes on minduflness and pain. I find breathing and being in the moment (THE MOST i CAN BE...), helps just a little. I catastrophize alot!! And in the tapes he does mention that labelling it pain...could make it hurt more..and has some suggestions for other names...but he's very kind about it, doesn't make any grand statement about what works or doesn't.
I have also found I'm burning my friends out...so probably need to do more sharing on this forum. I also have been working with my spiritual minister alot on this..and the prayers plus her belief in healing (heal the mind and body will follow ) are very inspiring to me. I also read a lot of positive, inspirational stories...just have to take some control back and create a new life with CRPS..grieve the old, but find some purpose in the pain. Hugs for us all. Linda |
I too live in fear. I think it's normal for anyone dealing with RSD and any other illness.
My main fears are around making things worse pain wise. If I plan to go shopping or out with friends, I am always thinking about what could make it worse (walking, air, stress, transport etc) and always end up getting into a state because of it. I try not to get stressed too much and try and allow myself to have fun but it's SOO hard! I know if I go out one day, for a few days afterwards I can be laid in bed in severe pain because of it. I've got used to things a bit more now (had RSD nearly 4 years) and have a theory that for every day I play, I have to set aside a day to pay and it's soo true! I honestly don't know what you can do to try and eliminate the fear. Like you, I am under a Psychologist's care but I don't think they help that much. I don't think anyone can truly understand RSD unless they have experienced it. My PM Doctor is sending me onto a 3 week course for people with chronic pain. It is supposed to help them think about life in a more positive way, has Psychologist and Doctors support and is supposed to help you 'cope' with the reality of a chronic illness better. I'm hoping it'll help but theres a long waiting list for it. Take care, Daniella. Sorry I couldn't help, just know you aren't alone! Alison |
I needed to take a year off from my job when my RSD first spread into the occipital region of my head - I couldn't deal with the sudden onset of severe daily migraines. I can truly emphasize with how you feel. My first message above came off a bit snotty, when in truth, I am blessed. after many court battles and with the very significant assistance of my husband and parents and siblings, I have had 34 ketamine infusions since last April 19th. I was able to return to work in June on a FT basis.
If WC had had their way, I would still be home, unemployed, with a combined cost of wages, meds and other less effective treatments in excess of the current cost of the ketamine. They (The Hartford, in my case) are truly evil and that is what is totally unnerving and very, very scary. My approval runs out in early May, and back to court we go... I am 50, and I can't imagine how awful this is going to be when I am 70 or 75...ugh. Mindfulness helped me a lot. If you google it you will websites at UMass and in California that have recordings you can listen to. don't ever give up trying to get better... the best of luck to you. Xoxo Sandy Quote:
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The terror of this disease is just pervasive. There's always the thought in the back of your mind that you didn't really do anything to get here and the slightest slip can cause symptoms to worsen horribly and even permanently. But we do have to get out there and do as much as humanly possible and stay as active as we can or we'll atrophy away much faster. For me this requires that I find things I enjoy and continue to do the things that I always enjoyed even if I can't do them well. Hobbies are critical even if it's just reading. If holding a book is hard then read books on the net. As the person in the link said; modify. Make the adjustments necessary to continue to lead as normal a life as possible. For me this is mostly about trying not to dwell on the dangers. Being as careful as possible tends to help this a little. Learn your triggers and avoid stress. |
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But there are many things you just can't do any longer or become chores. I had trouble just putting on my work shoes or peeling an orange. Now I buy oranges in a bottle. Everyone has to adapt and part of adapting is finding things to take the place of what was lost. I doubt this is an easy process for anyone but it's something we all need to do to the best of our ability. We must laugh in the face of terror. During the blitz of London in WW II people got used to be bombed everyday. They'd picked themselves up and dust off and then go back to carrying on with their lives. The major difference is we have to dust ourselves off just right or we'll be in more pain. |
Me too Danielle,
Me too Danielle, I feel the same way- hitting year 8. Pain is worse than ever.
Lots of fear anxiety talking to myself all day because of sleep deprivation. I too sleep only 2-3 hours. It is dreadful. I am at a loss as far as advice., Just wanted you to know that you are not alone. It does look like you have received good suggestions. I believe I will try them as well. .I am so sorry for your pain. Sincerely cz Quote:
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AND if I may add..our negatives must somehow be replaced now by our positives in our lives..It is very easy and (we most certainly deserve this..don't get me wrong) to get swallowed up in our new life of pain and ugly..no answers..our hands are full just getting thru our days.. but what little energy we have in reserve we must use to find a happy spot in our hearts..Because in the long run..when we turn that light out at night next to our bed...what did we gain if we just felt blah about ourselves and our lives now...?? I was a tennis instructor for many years..it allowed me to afford my college bills plus I got to play and teach the sport I loved... now I will not, Iam sure of this... I will never pick up my tennis racquet again or at least play competively anymore..but I've grown to understand and accept that cuz I/we have to accept where Iam now with my life and the positive is..I can still smile and give love and receive it back..and that warms my heart. I will always have my fond memories of my tennis days and students..and now it's about the ... Free and simple (wink)....It's out of our hands... we have to loosen our grip on our old life and accept the new...and somehow be appreciative we are still here to enjoy life and our loved ones in it...We need to afford that smile and laugh when ever we can... Hugz, Kathy |
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I mostly need zanaflex but I also take seroquel to get sleepy. A few medications seem to make me sleepy so I take those at night and some seem to keep me awake and I take those in the morning. Talk to your doc before changing but almost every time they won't care. I try to ask them in advance if it matters now but often forget. As needed meds for sleep can be a godsend. Anxiety, pain, worry, and other things like a racing mind can keep me awake and sometimes I need something to target those specific problems. Best wishes. |
Sorry for my late reply. My life is mad right now. I had to drive 7 hours yesterday for an apt and am going on little sleep. I won't go back tonight to sleep I can tell too. Busy days for me equal even less sleep since my body gets activated more with pain.
I am sorry so many can relate. Ali I did a pain clinic like you are describing. Well I actually only did 4 days of it at Cleveland Clinic cause the activity part was too much for me. I will say the therapy part was beneficial. It helped to see how others coped and felt with pain. Group therapy helps me more then individual that is for sure. I always say you can know something mentally but to feel it is a different story. I have felt in my life that people with positive outlooks do get farther. I hear others on here even who have such amazing outlooks when they say they are blessed etc. I am in ahhh. I think a major point that was stressed here is how important is to find healthy outlets and things we can do. Even if we can distract for 10 minutes it can help break up the mental stress this causes. Sending pain and worry free thoughts to all |
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Doc |
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