So as you know, I am fairly new to this wonderful fibro thing. Going to a GP today to hopefully be put on some meds that will help with the daily pain.
In having conversation with my husband, he brought something up. He said that it seems that once I received my diagnosis, my pain begin. I tried to explain that I have always been in pain, but have hidden it, not to sound like I was complaining all of the time. Now that I have pain and a diagnosis to go with it, I am more vocal about it, if I am not, no one will know that I need help.
This got me thinking...is he right? Although I know that my pain in true, am I letting a diagnosis get the best of me? Am I allowing the fact that I have an incurable disease run my daily life? Please don't get me wrong, I am NOT making up my pain or wanting attention from anyone, but it has really got me questioning is my mind is playing games with me. Does this make sense to you?
Showing my husband posts on this site has opened his eyes to my pain. Seeing that what I'm saying really is true and having him go to the Dr with me has helped. He has stepped up to the plate when I go home from work and want to do nothing but lay in bed. I feel like I'm so lazy and taking advantage of everyone in my family.
Well, thanks for letting me bounce this off of you.
I was first diagnosed with low thyroid and then fibro and then rheumatoid arthritis along with severe allergies and vitamin deficiency all in the last year. I have had problems and symptoms for several years though. My daughter says the same thing. She says I complain more now even though she believes me because she has seen me very sick. I think it is more we know what to complain about and we know its not in our head. When I first got sick it all hurt. Everything. All over and I couldn’t say just one thing. I did think it was in my head. Now I can say these joints hurt and I have this nerve pain etc. So maybe we do complain more but maybe its because we suffered in silence for so long?
I went through the same thing a couple years ago. You now know what you're up against, and you are evaluating things. It has been there all along but now you know why... you are tired all the time, you hurt all the time. Even small things like having to use the bathroom all the time, having a sore throat, ..., they all make sense. And you need to talk about it. And who better to listen then those you love. Believe me, it isn't in your head, unfortunately it is very real.
I had this discussion with my husband more than once. He is still learning that I am not the same woman I used to be. He sees me when I can barely walk because of the pain, he has seen me sitting in a chair sweeping the floor because I do not have the stamina to stand up, and he sees me when I exercise just by taking a walk and then the next day I hurt so bad I have to lay down. Very frustrating! I hate it when I feel like I have to remind others that I do have pain everyday! I feel like a broken record! My husband is starting to finally realize that this condition is not going away and that it limits what I can do!
I know what you mean. In a way when you have been diagnosed and know its real then you can become really aware of all your pains and scan it mentally more to see what hurts where and how much etc. I guess the more I focus on my pain the more it seems to hurt. The more distracted I am the better? It’s part of the acceptance after diagnosis and learning what helps etc maybe. don’t know if that makes sense?
I use to think, oh, it's the long commute back and forth to work, or I worked to many hours in the garden, or I didn't get enough sleep...I was only thirty years old.!!!..I should have been able to climb all mountains, leap all boundaries. ( Superman) LOL
But I couldn't, I was sooo tired and in so much pain, but I kept on going and going...I'm now 67 years old and have only been on meds for 4 years. I saw my doc last week and now I'm going to try a vicodin patch. maybe this will help....
And maybe this week my divorce settlement will happen and my stress level will go down and I will have less pain..
To all you ladies try anything and everything you can to make your lives better, even if it mean cutting out toxic people in your lives, negative friends and bad husband...Don't wait as long as I have
Well, I think there is a factor to knowing, it's like being injured and not feeling the injury until you actually look at it, then it hits you, but there is also the confirmation factor to consider. I think it is a factor, though small, you may have kept it to yourself, wondering if you could actually be experiencing all of this, as this is so complicated an illness, and fought sharing it with others, for fear of being disbelieved, or rejected.
Chronic illness is a lot to take in, not only for you, but certainly for your loved ones. I give your husband TONS of credit for even taking the time to read some of our discussions, that is the sign of having a good mate! I try to stay optimistic, and I think that if you have someone on your side, half the battle of life is won.
Hope you can work with your Doctors to find a med/meds that will help you to feel more like yourself, your old self that is!
In an effort to not let fibro run my life, I try to ignore whatever symptoms I can, which obviously includes not talking/complaining about it. This does back fire when dealing with other people. Because I'm not announcing every minute what hurts, then I must be fine, so why would I say I can't do something because of pain I get an odd look- like isn't that convenient.It's So frustrating.
Then there's the problem when first diagnosed (or even years later) when you don't know something is actually a symptom of fibro, or even assuming something Is a symptom then finding out it's caused by something else.
Communication is best. Letting others know exactly what hurts now as well as other oddities caused by fibro (like the sensitivity to sounds, smells, textures) that most people don't know about.
There is always a danger of letting the Fibro control you- just not doing things because of the pain it will cause tomorrow. Sometimes you do have to decide what Has to be done and not do what doesn't, because there's not enough energy/strength to do it all, but that's different than never doing anything. I fell into this trap for years. I had assumed (because of a bad Dr) that there was no treatment or hope, so I just sat and never did anything. Now (with a good Dr) I have medications that help (not eliminating symptoms, but help) and I can Do things again- not as much as a "normal" person, but So much more than I did 5 years ago.
Make sure those around you know there's a difference between Informing them of what you can do today, and why, and Complaining. Keep talking, holding it in wont help either of you.
Thank you for your reply. I went to the gp yesterday and was told there was nothing she can do for me except send me to a different rheumatologist. I am so frustrated. have a diagnosis with no help in sight. just made another apt with another gp who supposedly help patients with fibro. can’t get in until thw 5th but hopefully it will be worth the wait.
There is some truth in that your mind does control your pain....for example if you can get your mind off your pain you will not feel it or not near as much. So if you can have someone get you in conversation that takes your mind off your body...you won't hurt. This does not mean your body is not in pain....just your brain can only focus on one thing at a time.
THis was one the first techniques i read about how to handle pain with out drugs and i used it for over 30 years now...mainly while out hiking or having a test that hurts etc. Of course if your pain is extreme this most likely will not work...might help but will not work.
I also think that once we read all symptoms of a disease in the beginning we tend to start to think or 'notice' we have them. So best for the first year to just kind of keep journal and try hard to no take too much too seriously. Check with your doctors if you feel sick but wait and see if you are able too.
You will start to see how your body truly is after the year is up ...and also know best how to make it better.
Here is my example on myself....my hips hurt extremely bad. I thought it as fibro and at times arthritis as my hips would lock up. Well i have type of spondylitis throughout my spine. After i found this out...this year, my lower back i noticed was hurting as well as my hips. Now i have wondered if it due to the diagnosis?
So what i did was treat my pain in my hip area as i know that was real before and it does deal with lower back pain as well...so maybe it is my imagination or maybe before i was ignoring it ...as i tend to try and do that with pain since been in what doctors call severe pain most of my life.
I also say same thing can happen in regards to medication so i only try and look at how positive it will be....though i do check out the side effects before i begin them ..once i decide i do not look at them again unless i get something negative going on that just will not go away...just because i think our brain is open to suggestions.
Hope this helps....comes down to you...but i listen to your family...but only you know down the road if it is true or not. Believe in yourself once you know the truth!! good luck and health to you
I would hope that all people would not need a diagnosis to enable them to feel okay about saying how sick they feel. Especially to family and friends.
Many people never get a diagnosis and that does not mean they are not genuinely ill.
I get that knowing what is the cause can relieve a great amount of stress wondering etc. Plus it gives you a direction to educate yourself which is empowering...but i would hope that those who do not know realize that we are behind them and believe in them.
I suppose what I meant by my comment re validation and being able to talk about it is that finally you have the answers to the questions people throw at you.