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redsky

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Hey everyone!

I just posted on the general page but I thought I would send a shout out on here as well.

I am on here for my fiancee who has been diagnosed with Fibromyalgia just two months ago. Before that he spent years in pain wondering what on earth was going wrong with his body. Going to many many doctors and specialist who always told him there was nothing wrong...it as all in his head.

Now after all this time he finally has an answer, but definitely not one he wanted to hear.
He reacted very badly to the news; and has been extremely angry and bitter since.

In addition to his mood change my fiancee experiences pain in his ankles, knees, hips, cervical spine and worst of all his wrists.

He also suffers from what I believe is called " fibro fog" , short term memory loss, depression, extreme mood swings and celiac disease.

He has started new meds but not long enough to see any positive effects.

I know that there is no way I can ever understand what he and others with the same condition are going through. Im not here to try. I just want to help him anyway I can. To have a better idea of what is happening to him. To offer support in whichever way is needed.
And maybe just maybe to receive a little hope.

Thank you for reading. I look forward to being part of this forum.
 
redsky,
We are happy to have you. It is a great gift to want to help those whom we love and it is wonderful that your here in support of your fiancee. I hope you will find answers to your questions and also take time to meet others on the forum. We try to be support to all in need of help. :)
 
Well on behalf of those who have this horrible and stupid condition, we welcome you and thank you for being here for him. It is always hard to find someone who understands, so we do appreciate it when someone tries. If you have any questions, we are here to to help and assist the best we can. Welcome and we look forward to hearing more from you.
 
Hi redsky, it is good he knows what he's dealing with...yes we can have pain anywhere..

I cannot take tons of meds..so i have to find other tools....heat! Topical pain relievers, supplememts...

Has he had vit d levels checked ? Mine were low and it made me very moody..where fibro not as much...

Its great he has someone there for him...my hubby is good to help me , thank goodness
 
Hi redsky, as someone who was where your fiancee is now, I can say the best thing is that he has your support. Even when it seems like the "fibro fog" has taken over, it does help to know that someone is in your corner and understands that there are going to be bad days. This forum would definitely be good for him to join. I wish I had known about this group during my diagnosis.
Luckily once he finds the right combo of meds/routine with his doctor it will get better (I have many more good days than bad now that I found mine).
 
Hey! First, let me say thank you for caring enough to learn and try to understand this horrible/stupid/cruel disease.... So many don't care to try.. I have to commend and applaud you for your efforts!
My comment is about the mood swings... Unfortunately, when you're learning to cope with chronic pain issues, it can really mess with your emotions... It's not an excuse, butit happens, iI know because I watched my mom go through it and I'm going through it... I'm definitely getting better at not lashing out, but it's hard sometimes and the words just come out, verbal vomit basically... However, I'm wondering if his medications could be playing a role in the mood swings... I mention this because I have been on a lot of different medications for many different things throughout my life, and some have made me a miserable human being (not by choice..) for example I was put on Topamax a while back for possible epilepsy (they figured out I didn't have it thank god) but while I was on Topamax I turned into the hulk, literally the hulk, I broke 3 doors 3 different times... I would black out in a rage and not realize what I had done... Another was gabapentin, I've tried a few different types of meds, all forms of gabapentin, and they all made me extremely depressed and almost suicidal (which I am not depressed by any means...)... I would take a look at the warnings/side effects of his meds and see if any have emotional issues listed because his mood swings may not be completely his fault...
Again, not defending his or providing excuses, I just know based on personal experience that medications can have more side effects than just hives/rashes/etc....
I just want to say thank you one more time for taking the time to try and understand and help your fiancée :)
 
Thank you everyone for the warm welcome :) It is much appreciated. Since my last post we have gone to a support group...which was incredibly helpful. As well as really working on our communication. He still has good and bad days. Thank you for the info about med katie_opny. I will definitely look into that:)
 
When you first find out it can feel like a death sentence because you are in so much pain and you think this means you will be in that much pain forever. You can't imagine a day when you won't be in so much pain. Then the meds, ugh, some don't help with the pain and they make you crazy (for me it was Cymbalta, yuck.) But eventually, with a good doctor, things can get under control and instead the diagnosis "fibromyalgia" becomes a quick way to communicate your issue instead of listing 2 pages of typical symptoms. :)

I could not have gotten through this without the support of my husband. Your fiancee is very lucky to have you in his corner!
 
Wow. Fibro fog is new to me. I have never heard of that. But, you know it does explain a few things that I have witnessed my dad going through. I hope that your fiance starts to get better. I know that it can be difficult, but hang in there.
 
Kudos to you, redsky, for actually trying to learn more about the disease that is affecting your fiancee. He is so lucky to have you, I hope both of you are very happy! Don't worry, you need to be very patient with him right now, since he is a bit upset and trying to digest the news... it might take him a while to actually come to terms with it and even then isn't going to be so easy for him. You need to be super patient, he might get very upset and tell you things he doesn't really mean and that's when you need to be understanding and think about what I just told you.
 
I also suffer from Celiac Disease and Fibromyalgia. It took me probably 2 years of gluten free before I seen the good affects. You can have memory/brain fog with Celiac Disease. I did really bad. Actually even felt like I was in a fog all the time, extremely irritable, bloated like having twins, bowels a mess, felt like a wet blanket on top of me all day with extreme fatigue. With no exercise regime, I'm down probably 30 pounds. I kept telling everyone it was water retention and swelling. I was right. I know my own body. The brain fog lifted and the fatigue lifted. Unfortunately last year it came back with a lot of pain and I was diagnosed with Fibromyalgia after extensive blood work. Now I'm going to see a neurologist next month because most of my pain is muscular with twitches and cramping. Seems like your fiancees is more in the joints possibly. It sucks because being gluten free and seeing results was a dream come true. I never in my life ever woke up before 10am without an alarm clock. I always slept 10-14 hours and couldn't get to bed until between 12 and 3am. I was waking up at 7am on my own! That's gone now, though and I'm back to 10 hours a night sleeping, which I believe is due to meds and the fibro. I appreciate the fact you are here trying to help him. I don't think anyone in my house gets it at all and won't until they would experience it for themselves. Even when I'm smiling, I'm in pain and just hiding it the best I can because you have to push through each day. No one wants to live in bed or on the couch. It sucks. I guess my best advice would be to ask how you can help each day and he needs to know it's okay to ask for help.
 
I also suffer from Celiac Disease and Fibromyalgia. It took me probably 2 years of gluten free before I seen the good affects. You can have memory/brain fog with Celiac Disease. I did really bad. Actually even felt like I was in a fog all the time, extremely irritable, bloated like having twins, bowels a mess, felt like a wet blanket on top of me all day with extreme fatigue. With no exercise regime, I'm down probably 30 pounds. I kept telling everyone it was water retention and swelling. I was right. I know my own body. The brain fog lifted and the fatigue lifted. Unfortunately last year it came back with a lot of pain and I was diagnosed with Fibromyalgia after extensive blood work. Now I'm going to see a neurologist next month because most of my pain is muscular with twitches and cramping. Seems like your fiancees is more in the joints possibly. It sucks because being gluten free and seeing results was a dream come true. I never in my life ever woke up before 10am without an alarm clock. I always slept 10-14 hours and couldn't get to bed until between 12 and 3am. I was waking up at 7am on my own! That's gone now, though and I'm back to 10 hours a night sleeping, which I believe is due to meds and the fibro. I appreciate the fact you are here trying to help him. I don't think anyone in my house gets it at all and won't until they would experience it for themselves. Even when I'm smiling, I'm in pain and just hiding it the best I can because you have to push through each day. No one wants to live in bed or on the couch. It sucks. I guess my best advice would be to ask how you can help each day and he needs to know it's okay to ask for help.

How did you get diagnosed with celiac's? I ask because I have the suspicion I might actually be dealing with celiacs, I feel bloated most of the time and get a lot discomfort after eating certain things. I can't help but to wonder if it could be celiacs. What kind of test should I suggest the doc in order to rule out celiac?
 
Best of luck to you and your husband! It is a very painful difficult road, but with God and family anything can be overcome :)
 
It is great that you have taken the time to try and learn what your fiance is going through. Your love, support and understanding are what he needs most. A lot of the times patients with FMS do not get the support they need because people just do not understand what the fault with them is. Mood swings will be frequent and this will be what tests you the most. The meds take some time to even out and get properly calibrated so hopefully his pain will get a little better. That in itself will get him in a better mood. Look for aquatic therapy centers or other forms of therapy that will help with his condition.
Good luck and stay strong.
 
You are a good person for supporting him and even going above and beyond and learning about his condition to help him. Even with his altering moods you remain committed to him. Very rare nowadays.
 
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