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edouglas

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May 21, 2013
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05/2013
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mo
I know i am new here, as yesterday was my first post, but after i got home from work last night, in the worst pain yet, i got upset because my fiance simply does not understand! I don't know what to do, simply asking for a back rub seems as tho its a burden, he says why do you hurt so bad? or you can't hurt you take all them medications! i am so frustrated all i want to do is bawl, and that is all i did last night! I just don't get it, as in why is it that nobody understands until they are here? I admit, i am a caregiver and was taking care of a 27 y/o who just had a baby and could barely walk and had fibro, i would simply say to my caretakers it is all in their head! well i know now it is not "just in their head" it is ALL OVER, and i never stops!
On another subject, I am unable to sleep at night, or fall asleep or stay asleep, if i lay there my legs hurt and tingle and feel pins and needles and have to jolt my body to get the pain to stop, i have even taken muscle relaxers and melatonin and hot baths and so on so forth, but i can't get to sleep, or stay asleep! anyone have any other suggestions, i just want to give up on everything, honestly this is not a way to live! I am a CNA in a long term care facility and i lift constantly and move constantly often going with out sitting for the 12 hours i am working!
 

MercyL

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Joined
Apr 30, 2013
Messages
120
Diagnosis
01/1986
Country
USA
State
CO
I know i am new here, as yesterday was my first post, but after i got home from work last night, in the worst pain yet, i got upset because my fiance simply does not understand! I don't know what to do, simply asking for a back rub seems as tho its a burden, he says why do you hurt so bad? or you can't hurt you take all them medications! i am so frustrated all i want to do is bawl, and that is all i did last night! I just don't get it, as in why is it that nobody understands until they are here? I admit, i am a caregiver and was taking care of a 27 y/o who just had a baby and could barely walk and had fibro, i would simply say to my caretakers it is all in their head! well i know now it is not "just in their head" it is ALL OVER, and i never stops!
On another subject, I am unable to sleep at night, or fall asleep or stay asleep, if i lay there my legs hurt and tingle and feel pins and needles and have to jolt my body to get the pain to stop, i have even taken muscle relaxers and melatonin and hot baths and so on so forth, but i can't get to sleep, or stay asleep! anyone have any other suggestions, i just want to give up on everything, honestly this is not a way to live! I am a CNA in a long term care facility and i lift constantly and move constantly often going with out sitting for the 12 hours i am working!

First, my heart goes out to you. Sleepless nights and having no one to help ease your pain are a terrible combination.

As far as sleep goes, I couldn't sleep all the way through a night until I was put on a slow release morphine. I would wake whenever the pain broke through or when the muscle relaxer wore off and my head started bumping up and down on my pillow from the muscle spasms in my neck.

This still happens, but not nearly as often as before the medication switch.

Now, I get out of bed if I cannot sleep or wake after having slept for a bit. This way, I do not start worrying about getting through the next day without a full, consecutive 8 hours of sleep. I already have a plan for the days following nights featuring interrupted sleep, so I no longer worry about that. If you can figure out ways to get through days following sleepless nights,it can bring your stress down and may help you sleep better.

As far as getting others to understand, I am at a loss. A fiancee feeling put out by your request for help raises red flags, for me. Your request is not unreasonable and if he cannot understand, I wonder what sort of husband material he really is. What happens if you are pregnant and need his help to tie your shoes, reach items on top shelves, or rub your aching lower back near the end of a pregnancy?

Since your fiancee cannot understand, you'll need to find others to rely on. In your shoes, I would start by looking for fibromyalgia, chronic pain, or chronic fatigue syndrome support groups in my city.I would look for others dealing with the same issues and go to them for the emotional support the fiancee is incapable of giving.
 

edouglas

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May 21, 2013
Messages
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Diagnosis
05/2013
Country
USA
State
mo
well thank you for a reply and i think id rather just have this support group so far you guys are awesome, and i can't get any other pain med then lortab 5-500 i don't know how to, and on the understanding, he worries about me, but i think it is that he doesn't understand the illness honestly. I really honestly don't like feeling like a burden and im sure he doesn't mean to put it off that way, but i don't know how to relate my pain to something in real life, to anyone at all, i feel all alone on this issue, and feel like they shouldn't have to deal with it, ya know?
 

MercyL

Distinguished member
Joined
Apr 30, 2013
Messages
120
Diagnosis
01/1986
Country
USA
State
CO
well thank you for a reply and i think id rather just have this support group so far you guys are awesome, and i can't get any other pain med then lortab 5-500 i don't know how to, and on the understanding, he worries about me, but i think it is that he doesn't understand the illness honestly. I really honestly don't like feeling like a burden and im sure he doesn't mean to put it off that way, but i don't know how to relate my pain to something in real life, to anyone at all, i feel all alone on this issue, and feel like they shouldn't have to deal with it, ya know?


Does your boyfriend play sports? Has he ever had a bad injury? Is he familiar with tools?

I ask because the best way to describe pain to someone who does not have it themselves, is to use familiar objects and situations hoping to spark empathy.

I have described my pain as a raw nerve compressed in the jaws of a vice grip, having a pinky finger repeatedly crushed in a car door, or similar descriptive language with the phrase "but all over" at the end of the sentence.

If my audience has had broken bones, I tell them my pain is like that, but it never goes away, it never gets better, and the pain medications "manage" but do not "cure" or completely end the pain. The pain's cause remains, and the pain reasserts itself when you don't have your medications, and with fatigue.

People who do not want to understand will refuse to do so, plain and simple. Nothing means much to them unless it directly impacts their own lives and the more you try to get them to understand, the greater their denial grows.

There are websites addressing topics related to fibromyalgia, chronic pain, and chronic fatigue. You could try having your fiancee read information from those sites. Hearing or reading the information from a neutral, but respected, source might help.
 

mariposa

Senior member
Joined
Apr 19, 2013
Messages
459
Diagnosis
00/0000
Country
USA
State
PA
I'm sorry to hear that you're having to go through this. :-( MercyL had some great ideas and I hope they'll help you. The one about having him look at some websites may describe the pain or what you're going through better than you could put it into words. I'd research first, though, so I could find medical sites and respected sites from within the larger medical community. They'd probably hold more clout with him.

The other idea about finding a local support group is great, too... I know this group is wonderful when it comes to support, but I think it's also important to have someone a little closer to see a movie with, or go for lunch, or just sit together on the really bad days... it would be the best of both worlds.
 

edouglas

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May 21, 2013
Messages
8
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05/2013
Country
USA
State
mo
Thank you guys for your responses sorry am at work which would be why it took so long to respond. I don't know about the support group but I have faith he will come around he really has been supportive through my steroid injections in my lumbar, and he helps cleans house but just doesn't understand why I hurt so bad and doesn't like seeing me hurt. He really respects my primary doc so I will have him explain it to him my next visit.
 

edouglas

New member
Joined
May 21, 2013
Messages
8
Diagnosis
05/2013
Country
USA
State
mo
Wow my post wasn't posted, sorry for not responding faster am at work thank u guys for your help, I think I will have my doc explain to him he respects my doc. And my fiance does care just doesn't understand! He helps by doing my housework and helping lift stuff,view just don't think he knows how to handle it with me always in pain. He was great support when I was getting steroid injections in my spine.
 

1sweed

Moderator
Joined
Feb 4, 2013
Messages
1,956
Reason
DX FIBRO
Diagnosis
01/1995
Country
US
State
Pennsylvania
One of the things that helped me get a good nights sleep was buying a fiber bed pad. It is about 3 inches thick and lays on top of my regular mattress. They come as feather or foam pads as well, but I like the cotton filled ones the best. They come as twin or full, queen or king sized. I was always in so much pain even on a waterbed. So I got the fiber bed pad and it made a big difference in my sleeping. You can get them in foam if you need something a bit firm, but I like the soft pillow-like feeling and it helps relax the muscles in my legs. I use a sleeping pill when all else fails, which is when I am under a lot of stress. Otherwise the bed is so comfortable and I go to sleep fast and wake up feeling better than before.
You might want to do a web search on them. :)
 

graham

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Joined
May 11, 2013
Messages
5
Diagnosis
05/2000
Country
US
State
az
You can't always beat the pain or sleep through it but I know finding a few people who I can talk to and moan & groan to if I need to vent has really helped. If you are in the pain we are in or feeling disappointed because on top of that so many of us go without good sleep which doesn't help the pain or our state of mind I think it is hard to understand. Since it isn't something people can "see" they often believe we are just being dramatic or something. Try and find a few people that you can talk on days when things are feeling especially bad lots of times it helps me just to talk to someone else who doesn't act like I am crazy. As for sleeping one thing that has really helped me is sleeping only for a few hours and then getting up and moving around. Trying to catch a nap in the afternoon. If I actually can sleep and sleep for 8hrs or so like most people do I wake up in far worse pain than if I sleep 2-3hrs then get up and move around a little,make a cup fo tea or anything that gets me up and moving a little, then go back to sleep for another few hours.
 

edouglas

New member
Joined
May 21, 2013
Messages
8
Diagnosis
05/2013
Country
USA
State
mo
Thank you guys for your advice, i appreciate it. Sorry about my delayed response, has been a very busy week for me. hope you all have a wonderful memorial day weekend, here is to a fun-filled trip! NOT, i don't know about anyone else but long car rides are the worse! Any ways have a safe and good weekend.
 

sleepybynature

New member
Joined
Jun 12, 2013
Messages
2
Diagnosis
06/1997
Country
CA
State
Alberta
No one will truly understand what you go through unless they themselves have gone through it! I thought that after having gone through this misery of FMS, CFS and MPS for so many years that my whole family and friends eventually started to understand what I was going through and just when you think they do...they don't! Reminding them is of no use cause you then sound like a broken record and/or like a hypochondriac, and eventually people start to tune you out! If you don't remind them then people think that your better! There is a no win situation and therefore the only true way to get through this is to keep up on forums such as this and talk it out with people who are going through what you yourself are going through! Sorry I couldn't offer you anything better, however; something is better then going at it alone! =)
 

Amalia

Active member
Joined
Jun 20, 2013
Messages
49
Diagnosis
00/0000
Country
ro
State
romania
Hello! It looks like you are going through some awful times and i can only imagine how hard it is when your loved one doesn't understand you. I think you should really try to talk to him, because you need a lot of support and he needs to be there for you. If he doesn't wanna do that, well.. maybe he's not right for you. I am sorry if I said too much.
I think you will find comfort here and people dealing with the same thing who can understand you. Good luck and keep your faith!
 

fibrogal

Active member
Joined
Jul 4, 2013
Messages
91
Diagnosis
07/2008
Country
US
State
Alabama
Hello,I'm a new member, so I just saw your post. You mention tingling and pins & needles type pain, which sounds like nerve pain to me. Have you ever tried Neurontin? This is an older med, but in the family of lyrica, which works on nerve-type pain. It helps many people, plus it makes you sleepy, which could be a good thing if you take it at night. It might be worth a try for you. Good luck!
 

WhoAmI

New member
Joined
Jul 24, 2013
Messages
7
Diagnosis
06/1997
Country
USA
State
AZ
I too am having that problem. Diagnosed in 1997 after I had my son. My husband seemed to understand more back then. Then he does now. we have been married 20 years and he is having serious problems with my flare up right now. So I know how painful it is, and then I feel like a schmuck in addition to having this flare up. I am in the midst of a flare, its been a LONG one, about a week. I live in AZ where fortunately the humidity is fairly low except we have reached monsoon season so it is high (when it gets above like 30% I start having problems) So, I just feel you and I know what you are going through. When no one understands, and then I get depressed, and that makes my pain even seem worse. So yes, it is a never ending cycle...

So please know you aren't alone. <3 love and gentle hugs your way <3
 

pknitj

New member
Joined
Jun 13, 2013
Messages
5
Diagnosis
03/2006
Country
US
State
Ohio
Hello...

I have printed things out and asked others to read it. My husband has actually gone on line to WebMD and looked up fibromyalgia to find out info so that he could understand. With others, I ask them to read some info, or post it on FB....if that is doable for you.

I believe it is essential that you have others who understand...that is why these support groups are so good. It makes me feel "normal" to read about all that others are going through and to see myself mirrored in their own struggles, symptoms and side effects. It makes me feel and know that I'm not crazy!

My last issue is to learn to accept...not to just give up...but to accept that this is what it is...do the best I can to take care of myself and do what I need to do to feel better...be that a nap...a day in my chair...or whatever. I just came out of a month long flare...hitting the wall, so to speak. I had to slow down...quit running and doing so much and talk to my doctor and get some new meds to help...

Do what is best for you ;o)...
 
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