Learn from patients with pain similar to yours

CatchMyPain Community and Pain Diary App to manage chronic illness

Hi, I'm Jolly Roger

Jun 12, 2015 10:35 PM

Hi, I'm new here. About 5 years ago I was diagnosed with rapid onset rheumatoid arthritis. I was then informed this was in remission and that I had fibromyalgia. The pain is relentless although reading of many other's experience I feel blessed. The main symptom is chronic fatigue. This is coupled with insomnia. I don't know why I'm telling you all this. I just wanted to say, 'Hi!'

Jun 13, 2015 12:27 AM

Hi, welcome to our group. I think you told us because you wanted to be around people who would understand you. I am not sure if that is the case but many of us find that because our families don't experience the pain 5th at we do, they don't seem to understand what we are going through or can really empathize with us unless we really try to make them understand. Even though we are happy that the ones we love don't experience our pain, we probably try to keep positive for them and try to not to drag them down. Because of that, they may think that we can do more. They may not be aware of our limitations. Coming to a place like this, you can tell us how you feel. You can tell us the pain you are in. Because we experience a lot of pain, we can truly imagine how you feel and offer you comforting words and encouragement. When you are lost on what to do with a medical problem, we share what has worked for us. Some of us have researched for others to find out what is out there. Sometimes you may be tired of the way you are being treated in regards to your pain. You may want to get on here and rant and tell us how you really feel. Sometimes we need to get it out when we can't tell the person or people we really need to tell. That is where our group wants to be here to hear how you are suffering and offer there support and encouragement. Having suffered pain for five years, you probably have a lot of experience in the things that I have just talked about and you would be good about offering your experience and love for others. That is where, if you are comfortable, you can post and offer your help and encouragement to others. I am glad you shared with us. I am sorry that you have suffered with chronic pain for the past five years. It must be exhausting to be so fatigued. I have been there but nothing like you. I have something going on where like three times a week something just hits me and instantly become so weak like I don't want to lift my head. When I am suffering pain, I can watch tv to distract me. But when I have this fatigue, I just lay there and stare. My body hurts so bad. The only way I can describe it is like getting the influenza. Not like a little flu but the influenza. I feel like I am going to die but because I have had it so much, I know I won't. When it is happening, I just feel my heart beating. I feel like I am using all my recourses to keep alive. When it happens, No matter how hot it is, I am cold. That is really odd for me because I am hot year round. But no matter how terrible I feel, it clears like 4 to 8 hours later. They just said it was fibromyalgia. I told them they are just telling me that because they are to lazy to figure out what is wrong with me. I don't have any trigger points which from what I understand is a must with fibromyalgia. So I understand fatigue just not to the degree you put up with it. Putting up with it long term would be exhausting. You must be a strong person even though you may not feel like it. It takes a strong person to handle an illness like you have. Take care. I wish the best for you I hope that you have the best day that you can today.

Jun 13, 2015 1:08 AM

I am sure you will find good insights here. Even though I don't post so much I found many interesting topics to.read in. And I saw many opened new ones for specific questions.
Have a good weekend

Jun 13, 2015 1:08 AM

I am sure you will find good insights here. Even though I don't post so much I found many interesting topics to.read in. And I saw many opened new ones for specific questions.
Have a good weekend

Jun 13, 2015 1:08 AM

I am sure you will find good insights here. Even though I don't post so much I found many interesting topics to.read in. And I saw many opened new ones for specific questions.
Have a good weekend

Jun 13, 2015 1:08 AM

I am sure you will find good insights here. Even though I don't post so much I found many interesting topics to.read in. And I saw many opened new ones for specific questions.
Have a good weekend

Jun 13, 2015 8:20 AM

JollyRoger, welcome to our community family!! I'm sorry you're suffering. I understand the fatigue that comes with the pain and then not sleeping. You can tell us anything here.. It's a no judgement zone. You can vent, complain, cry, joke, anything... We are all here to listen and help one another. Have a blessed day and I hope that you find comfort in knowing you're not alone and that there is help here.

Jun 13, 2015 9:28 AM

Welcome to the community JollyRoger! Up until April I had fibromyalgia that was the only cause of my fatigue. I get how hard it is to fight through the fatigue to do what you need to do. I also suffer from insomnia, but after many years of treatment with Ambien (not on it now), my doc has me where I am having fewer nights of insomnia. In April I was diagnosed with hypothyroidism, so add a second fatigue cause. From March until about two weeks ago I was struggling extremely bad with fatigue. Then I got a third diagnosis of sjogrens, an autoimmune disease, which also causes fatigue. My thyroid meds have begun to help with some of it, and I was started on Plaquenil Wednesday. I've fallen asleep in the late afternoon this week from fatigue, just giving out.

The reason I'm telling you this about myself is, while researching the sjogrens I found out that it's common for people with RA, fibromyalgia, or hypothyroidism to also develop a second or third autoimmune disease, like the sjogrens. And it causes fatigue to worsen if battling flare ups from multiple lines at the same time. Sjogrens primarily attacks the moisture of the mouth, nose, eyes, and throat, but it can attack major body organs. It also causes fatigue. If you have the dry eyes nose and mouth, check out the sjogrens website.

As for the insomnia, due to coming off the Ambien my psych doc kept doing blood work & increasing my meds until I reached the proper serotonin levels, which helps with pain & sleeping. It has helped my insomnia where I have about only 2-4 nights a month of absolute insomnia. I use melatonin sometimes if I'm having a hard time falling asleep. But it does leave me with a lethargic hangover until I'm up for three hours.

I hope you can find solutions to help with your fatigue and pain. I'm praying so! 🙏🌼

Jun 13, 2015 11:19 AM

I really appreciate all your comments. I find the relentless pain so exhausting. How do I rate the level of pain I feel though. Some of you appear to be in a lot more pain than me. You have painted your figure with red paint. The fact that I am still here putting up with it shows that my pain is bearable. Sometimes I want to scream with it though. I think of a level 10 pain as being the extreme. Someone who is being tortured by experts would be level 10. I'm not at that level. Thank God. How do I accuretly describe what I'm suffering though. I have chronic fatigue yet somehow lead a fairly active life. I work as a radio presenter.

Jun 13, 2015 12:59 PM

Jolly, I would say, just write what you feel both physically and emotionally. It will come out right when it comes from the heart what you are going through.

Jun 13, 2015 1:53 PM

Honestly the best explination of the 1-10 pain scale I have seen is on prohealth.com the site sells supplements but some of the articles they have are actually pretty good. Once on the page use the page search bar and enter pain scale.
Just make sure you take a copy of that scale to the doctor with you so that you both have the same reference material since pain scales are so subjective.
Oh and welcome. I see your user name and I get the last Saskatchewan pirate by captain tractor stuck in my head. ☺ hope your day is going good

Jun 13, 2015 3:47 PM

I just happened to see one of those smiley face to crying face pain scale posters at my pain docs office and took a picture of it for this exact reason; how to choose the rating. I wish I could post the pic but I'll break down the faces & numbers.

0=very happy face & no pain; 2 =smile & mild, ignorable pain; 4 = straight lips or pursed mouth, furrowed brow, breath holding & moderate pain, interferes with tasks; 6 = slightly frowning, rapid breathing & severe pain, interferes with concentration; 8= intense frown, slow blink, open mouth & very severe pain, interferes with basic needs; 10 = very sad face, eyes closed, moaning, crying & worst possible pain, bedrest required.

I hope this is helpful to you & others JollyRoger. 🙏🌼

Jun 13, 2015 4:05 PM

Many thanks to you all. I have a far better idea of the pain scale now.. Gotobef, you might like to hear one of my radio shows. There are recordings of them at http://jollyrogeruk.podomatic.com I think you may well love the intro.

Jun 14, 2015 2:34 PM

Thank you oregonhomestead

Jun 14, 2015 3:44 PM

Welcome to our pain community family. We are all here to listen no matter the time. It doesn't matter if you rant and rave, we have all been there and probably will be again. We try and be supportive of each other, and listen to our needs, and give our experiences that we have gone thru. I hope you can get some much needed rest. Will be praying for you.

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