redstar

Illness

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I have been ill with chronic pain and other symptoms for a long time now    and it seems it’s incurable. I live in a lot of pain every day and although I have a lot of great wonderful things in my life and I feel I have done most of the things I wanted to do and learnt so much. I can’t help but feel I’ve had enough and my soul is tired and each good thing seems to get tainted with pain. I guess I’m writing to you all to because I was hoping maybe there are some out there with some experience to share or offer that might help in some way to keep going x

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Dear Red,  reading your post, my heart aches for you, I cant fathom how that must make you feel, I suppose I could take a guess though. The only words I can think to share is, no matter what happens to us in life, sickness, sadness, depression, etc etc. there is always hope for a better tomorrow.  I think about things sometimes and if we quit on anything, what if, if we kept going a little bit longer  we would have that break through or whatever the case maybe.  I know that I don't know how you feel and I really hope you are not suffering to terribly, but I think we need something in our lives to motivate us to want to keep going... love, family, friends, goals, life experiences, etc...   I hope you can find something to put that fire back in your heart to keep going and living.   I do wish you much joy and if you need a friend, my door or inbox is open.   

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Mindfulness Based Cognitive Therapy was created for chronic pain patients even though it's now used more for depression. I don't know if it will be effective for you but it's worth a try. One free source is palousemindfulness.com 

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1 hour ago, JadeBleu15 said:

Dear Red,  reading your post, my heart aches for you, I cant fathom how that must make you feel, I suppose I could take a guess though. The only words I can think to share is, no matter what happens to us in life, sickness, sadness, depression, etc etc. there is always hope for a better tomorrow.  I think about things sometimes and if we quit on anything, what if, if we kept going a little bit longer  we would have that break through or whatever the case maybe.  I know that I don't know how you feel and I really hope you are not suffering to terribly, but I think we need something in our lives to motivate us to want to keep going... love, family, friends, goals, life experiences, etc...   I hope you can find something to put that fire back in your heart to keep going and living.   I do wish you much joy and if you need a friend, my door or inbox is open.   

Thank you so much for your beautiful post xx your right I need things to plan and focus on xx 

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29 minutes ago, ChemFem said:

Mindfulness Based Cognitive Therapy was created for chronic pain patients even though it's now used more for depression. I don't know if it will be effective for you but it's worth a try. One free source is palousemindfulness.com 

Thank you so much for the resource I have had many years of different therapies and am currently awaiting the start of interpersonal therapy soon as well I guess I just can’t be positive some times and there seems no sense or fairness to it all. 

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I think it's a lot to ask of yourself to be strong and positive all the time.  Sometimes you just need to be free to feel the emotions that come when you have chronic pain.

One of my best friends has chronic pain and they still can't figure out why, and sometimes she just needs to scream and be angry about it.  Then she can move on and go back to finding her ways around it to get through daily life.  Another friend has a rare genetic disorder than lands her in the ICU often, and they always struggle to get an IV in her and to get to the bottom of what's up.  Her kids have the same diagnosis, and her oldest is just starting to show his symptoms and have hospitalizations.  It's heartbreaking.

Both of them just need to fall apart sometimes.  Do you have someone you feel safe falling apart with?

Are there things you want to do in your life?  Do you have kids?  Are you able to take vacations?  Any places you want to go?

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Can i ask what pain are you suffering from?  Arthritis, Fibromyalgia etc. 

I get pain sonetimes from Arthritis etc. Joint pain. Fortunately i can still work without too much trouble.  Diet can help to lower inflammation, things like cutting out sugar, grains, gluten and casein from dairy. Hopefully you can find help soon. Best of Luck. 

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On 22/02/2018 at 3:30 PM, BiTriMama said:

I think it's a lot to ask of yourself to be strong and positive all the time.  Sometimes you just need to be free to feel the emotions that come when you have chronic pain.

One of my best friends has chronic pain and they still can't figure out why, and sometimes she just needs to scream and be angry about it.  Then she can move on and go back to finding her ways around it to get through daily life.  Another friend has a rare genetic disorder than lands her in the ICU often, and they always struggle to get an IV in her and to get to the bottom of what's up.  Her kids have the same diagnosis, and her oldest is just starting to show his symptoms and have hospitalizations.  It's heartbreaking.

Both of them just need to fall apart sometimes.  Do you have someone you feel safe falling apart with?

Are there things you want to do in your life?  Do you have kids?  Are you able to take vacations?  Any places you want to go?

Thank you so much your right sometimes I do need to just rant and cry and I am lucky enough to have a wonderful support network. I have children and we bought a caravan a few years ago to get out and about as I can’t travel far but we do try so hard to make the best of it.

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On 23/02/2018 at 0:30 PM, Vampire said:

Can i ask what pain are you suffering from?  Arthritis, Fibromyalgia etc. 

I get pain sonetimes from Arthritis etc. Joint pain. Fortunately i can still work without too much trouble.  Diet can help to lower inflammation, things like cutting out sugar, grains, gluten and casein from dairy. Hopefully you can find help soon. Best of Luck. 

It’s fibromyalgia type symptoms and so far no idea where it’s all come from I have another consultation referral for a specialist to help see if there is anything else they can do for me. I think so far I have probably tried everything you can find to help myself I am constantly looking for a way to make things easier or better.

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26 minutes ago, redstar said:

It’s fibromyalgia type symptoms and so far no idea where it’s all come from I have another consultation referral for a specialist to help see if there is anything else they can do for me. I think so far I have probably tried everything you can find to help myself I am constantly looking for a way to make things easier or better.

Have you seen a naturopath. I really think diet has a lot of answers. Worst thing is the meds only help the symptoms but don't get to the root of it. I have an auto immune condition as well and sorting stuff out isn't easy.  I really feel that the body can heal if given the right fuel. 

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32 minutes ago, redstar said:

It’s fibromyalgia type symptoms and so far no idea where it’s all come from I have another consultation referral for a specialist to help see if there is anything else they can do for me. I think so far I have probably tried everything you can find to help myself I am constantly looking for a way to make things easier or better.

I follow a Dr Axe on facebook or you can go to his web site. draxe.com  he's an nutritionist and dr of functional medicine.  He's amazing.  It might help. Certainty worth checking out. 

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6 hours ago, Vampire said:

I follow a Dr Axe on facebook or you can go to his web site. draxe.com  he's an nutritionist and dr of functional medicine.  He's amazing.  It might help. Certainty worth checking out. 

Many thanks for the advice I have followed a low fodmap diet and seen dietitians as I have ibs and that helped a lot. I hardly take any meds due to allergies and the fact they do nothing xx

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15 hours ago, redstar said:

Many thanks for the advice I have followed a low fodmap diet and seen dietitians as I have ibs and that helped a lot. I hardly take any meds due to allergies and the fact they do nothing xx

Do you take probiotics at all?  

I get an inflammatory bowel disease which i get a bit of joint pain as well. Probiotcs help and I eat Manuka honey which also has been excellent. An anti-inflammatory diet rich in omega 3 helps to. I guess it's trail and era really, what suits one person doesn't suit another. Stuff like turmric and ginger can help inflammation to. I hope you find sonething that works for you. It's not easy and gets you down to. My best wishes to you redstar. Hugs. X

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Yep tried all of those for extensive period I know lots of people that turmeric works for for many things.

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On ‎21‎/‎02‎/‎2018 at 3:08 PM, redstar said:

I have been ill with chronic pain and other symptoms for a long time now    and it seems it’s incurable. I live in a lot of pain every day and although I have a lot of great wonderful things in my life and I feel I have done most of the things I wanted to do and learnt so much. I can’t help but feel I’ve had enough and my soul is tired and each good thing seems to get tainted with pain. I guess I’m writing to you all to because I was hoping maybe there are some out there with some experience to share or offer that might help in some way to keep going x

Sorry to hear that you suffer so much pain. It's totally not fair. I'm sure you have tried everything that has been suggested to you. You've probably read tons of stuff on the internet also. A woman I know suffers from chronic fibromyalgia. No prescription drugs helped her, but she recently started seeing a rheumatologist and has experienced quite a bit of improvement.

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I wonder what the rheumatologist has done for her?

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2 minutes ago, redstar said:

I wonder what the rheumatologist has done for her?

She is a friend of my mum, so will try to find out and get back to you.

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@redstar

I also have chronic pain,  but not to the extent that you have described.  It certainly can get in the way of enjoying daily life - I can get grumpy and irritable on bad days.  It also has been known to keep me up at night. As I get older, it gets worse.

About a year and a half ago I started doing hot yoga, specifically Bikram, vinyasa, and yin.  Almost immediately I noticed a difference - so did my husband because I stopped asking him to rub my joints, and also I needed far less chiropractic treatment. I feel really good most days.  But it requires maintaining a regular practice...if I stop going for a couple of weeks, my pain comes back.  Luckily just as quickly, when I start up again, it goes away.

Maybe hot yoga could be helpful to you as well :)

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On ‎04‎/‎03‎/‎2018 at 2:43 PM, redstar said:

Thank you very much!

I spoke to her very briefly and she mentioned that a rheumatologist specialises in conditions that affect muscles and joints. I presume your fibromyalgia gives you grief in those areas of the body. He gives her different therapies, each patient is different, but he does give her heat treatment in winter, which she swears has helped a lot. 

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On 3/4/2018 at 8:35 AM, redstar said:

I wonder what the rheumatologist has done for her?

I have fibro and rheumatoid arthritis and see my rheumatologist for both. Have you been tested for RA? I have what is called sero-negative RA so I do not show positive on the traditional blood test. My rheumy says fibro and RA often go hand in hand. 

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On 08/03/2018 at 2:56 PM, MarriedBi said:

I have fibro and rheumatoid arthritis and see my rheumatologist for both. Have you been tested for RA? I have what is called sero-negative RA so I do not show positive on the traditional blood test. My rheumy says fibro and RA often go hand in hand. 

This is really interesting and slightly scary but makes total sense x

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I don’t know how you could get a definitive positive diagnosis where you are. I go to a rheumatologist who deals with experimental things as well and he sent my blood off to some place in California that measures the proteins and such and determines your disease state (mild, moderate, or extreme). I was moderate at that time. 

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3 hours ago, alexandrite said:

Hi, I know you’ve seen my other posts about my Ehlers Danlos Syndrome/POTS and fibromyalgia....

I'm in chronic pain 24/7 ...my main pain is thoracic spine, rib cage and upper abdomen which is constant burning as if my skin has been set fire to along with what I can only describe as stabbing of knives randomly throughout my rib cage as if I’ve got pleurisy but I haven’t. My spine aches and I also have burning down the backs of my legs and a very sore neck and random headaches which vary in intensity.

 Last night I’ve only slept 11/2 hours due to pain. I can’t take pain meds because they don’t work in some people with EDS and the opiates I can’t take anyway because they affect my breathing. 

How do I cope? .... ok my main method is first of all distraction. If I can focus my attention away from the pain then that’s great. Music is brilliant for this. If I can’t play my keyboard due to high pain levels, I listen to music instead. I use this to meditate. Any kind of music that you like will work. If you can’t go outdoors due to a particularly bad day, remember you can go anywhere in your mind!

If distraction isn’t helping I use either ice packs or infra red heat pads. Sometimes I just use either and sometimes I alternate with ice and heat. My body responds differently on different days so I have to use trial and error on each day.

I have magnesium supplements because magnesium is a muscle relaxant and can sometimes just calm things down even if it’s only a little it helps.

Hot baths or showers really help. I have a shower seat and I just sit under the shower and let the hot water land on my neck and run down my back.

some days I have to lie down all day, others I have to move about. I always start the day by trying to be active but if my pain is being exacerbated I know it’s a lie down day.

Capsaicin cream can help by heating up the skin and distracting from the pain. It’s all about pain gate theory. This is what happens when I get a headache too, I put menthol in my forehead and then put a cool gel strip over the top and it feels like ice. This distracts from the headache by replacing the sensation with a cold one. Capsaicin cream used regularly can have an effect of dampening down nerve pain so that can help in that way too. TENS machines work on the pain gate theory too, giving sensations that mask the pain. 

massage can help too. 

A damned good cry also helps. We are taught that we shouldn’t cry but in my experience, releasing all the pent up emotions of having to deal with chronic pain by having a good cry benefits me tremendously. It’s not about being weak, it’s about using an emotion just the same as when we use laughter when something is funny. It’s normal to cry and release the emotions every now and again. Obviously crying every day can indicate depression and that needs treatment too.

There are medications for nerve type pain/fibromyalgia pain which work on gaba receptors. These are called Neurontin (gabapentin) and pregabslin (Lyrica). Unfortunately they don’t work for me and I can’t tske higher doses due to severe side effects. However a lot of people have had brilliant results.

Amitriptyline (an old type tricyclic antidepressant) used in lower doses can help with sleep and calm pain down too. Again, I get side effects that prevent me from taking this drug nowadays but in the past it has helped me a lot.

Never start thinking about what you could do that you can’t do any more. Think about all the things you’ve done or still can do that some others can’t. There is always somebody far worse off. 

and finally, this is what helps me more than anything. Laughter. (Google gelotology). A good comedy, just generally finding humour in every day life, however you do it, just try and see the funny side. It’s very tough to do on those dark days when pain is absolutely raging but keeping a sense of humour as much as you can will help.

well this is my coping mechanism, I hope something out of that lot might help you. 

I wish you days with as little pain as possible. Remember you’re strong!

Hugs x. (P.s. that was a bloody long post... I think I just wrote a book again lol)

Thanks for the novel, but I found it very sad indeed. However you didn't mention Acupuncture? especially Chinese Acupuncture. Does it work? 

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