Parnter of Fibromyalgia sufferer (NEW MEMBER)

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Lolotte
New Member


Date Joined Aug 2010
Total Posts : 7
   Posted 8/18/2010 12:26 AM (GMT -7)   
Hi all,
My partner (D-27) has been suffering from Fibromyalgia for 2 1/2 years now, diagnosed a year and a half ago. I only found this forum today and wish I had known about it before. Fibromyalgia has changed our lives and as I am sure you can understand... its been hell. The number of specialists we saw who told us 'there's nothing wrong with you!' began to really take its toll. He's on numerous medications, however where to from now... we just seem to have hit a wall. I look forward to reading other posts, to try and get a better understanding of FB and also other peoples experiences with FB. I have joined from a carers point of view, knowing that we are not alone helps. I feel so useless sometimes, because no matter what I do to help the pain comes back. I feel guilty that I can sleep and wake up feeling refreshed, and he wakes up upset and exhausted. He's finding it difficult to cope with and every morning is torture. So bad that he doesn't see the point of waking up if every morning is going to be like this. I try and be positive, and I would do anything to help him feel like himself again. I love him dearly.
Cheers
Lolotte

MinnyMouse
Regular Member


Date Joined Jun 2010
Total Posts : 197
   Posted 8/18/2010 3:10 AM (GMT -7)   
Lolotte -
Welcome to our family. Fibro as you said can be hell at times. I really appreciate you coming on to learn how to support your partner, so many times there are partners out there that don't try to get involved or try to understand and help. It's awesome that you are here. I am not the one to try to adivse, but others with extensive knowledge will be along soon to help answer questions. You have come to the right place. I found the "fibro 101" at the top of the message board to be helpful and would suggest you dive into this as there are links to many great peices of information. I'm in the smack middle of a flare right now so I know how he feels.

You are not alone by any means
Hang on and people will be here soon.
Steph
Savella, Lyrica,Mobic,Tramadol,Flexeril,Omeprezole,Vitamin D3,

Lolotte
New Member


Date Joined Aug 2010
Total Posts : 7
   Posted 8/18/2010 4:34 AM (GMT -7)   
Thanks for the warm welcome Steph. I appreciate it :o)
I'll get reading 101 has lots of info, thanks for the heads up.
Good luck with the flare up, I hope you're ok.
take care steph
Lolotte

sotiredoffibro
Veteran Member


Date Joined May 2010
Total Posts : 1556
   Posted 8/18/2010 5:48 AM (GMT -7)   
Hi Lolotte and welcome, like steph said it is admirable of you to want to help and support your partner. We are all different in what medications our bodies can handle or what helps us more than others. It is like a trial and error game. He sounds like he is getting depressed which is very common for us that have fibro. would he be open to seeing a counselor or psychiatrist to help him deal with living with fibro. He also needs to get his vitamin d levels checked because for some reason we with fibro are usually low on vitamin D. Another thing that can help is gentle exercise like walking or swimming. He can start out slowly and then work his way up. Alot of us feel better if we stay somewhat active. If he does nothing it will cause him to stiffen up which can cause more pain. Kind of like a vicious cycle. Anyhow welcome to our family and dont be afraid to ask questions we will help out as much as we can.
Gentle Hugs
Shirley
DX: Fibro, Gerds, COPD, Osteoarthritis, Osteoporosis, High Blood Pressure, and Depression.
When I get where Im going dont cry for me down here. (Brad Paisley & Dolly Parton)

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17101
   Posted 8/18/2010 8:40 AM (GMT -7)   
Hi, Lolotte, and welcome!  You really love him, don't you.  He's lucky to have you on his side.
 
Do you think he'd come on the forum?  We do have a few guys that pop in occasionally.  He can ask anything that's on his mind and we would be here to help him.  I hope he will join in.
 
Meanwhile, don't hesitate to ask questions.  We are here to help you to help him.  I hope to hear more from you soon.
 
Sherrine
Forum Moderator/Fibromyalgia
************************
God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7

Lolotte
New Member


Date Joined Aug 2010
Total Posts : 7
   Posted 8/18/2010 5:52 PM (GMT -7)   
Thanks guys :o)
I have told D-27 about the forum and sent him a link and also some info from 101 which i found was interesting. I hope he joins also, as I think it would make him feel not so alone going through this.
He does see a counselor, however personally i think she's pretty useless. He's very good at putting on a brave face for others and not really talking about the issues (except to his immediate family). I feel that we are on a search for another counselor, who will be able to see through his facade. As for exercise, well we are doing some swimming, and light walking. However he is very sore the following day, even if it is light. He does get worse though if he doesn't do anything. So as you say Shirley, it is a vicious cycle. He has lost a lot of friends due to FM, as they were just unable to understand why he didn't want to go out with them, and thought he was using 'the pain' as an excuse. They then slowly drifted apart. they don't seem like good friends to me, if that is how they behave. He has found that acupuncture has worked well for him in the past, however has just started another round of it and he is disappointed with the guy who does it. The acupuncturist/ natropath just doesn't seem to care. I don't know if anyone else has experienced this, but so many 'professionals' we see really don't seem to care and don't do their job properly. This also disappoints him and adds to the problem. We have an appointment with the GP and a Nurse to talk about medications next week. I think the GP really want him off the Oxycontin for his long term health, but the nerve pain he experiences without it is debilitating. The GP said a rheumatologist can't help, we've seen neurologists (nothing they can do). What type of Dr. deals with Fibromyalgia?
Take care all and thanks for being there x
Lolotte

Acheybody
Forum Moderator


Date Joined Nov 2008
Total Posts : 5929
   Posted 8/18/2010 6:28 PM (GMT -7)   
Lolotte,
I'm very surprised that a GP told you rheumys can't help! I don't go to one, but from the posts here, that's one of the most common kinds who do treat us! Yes, people can be so unempathetic when it comes to someone else's pain. I've lost some friends over this, too, and it hurts.

At least, your partner has you, and that's a big plus.

Debbie
...fibromyalgia, hearing loss, elevated liver enzymes, skin grafting (back), arthritis, scoliosis, lumbar disc damage, sciatica, IBS, migraines, tachycardia, cancer surgeries (face).......I take Nortriptyline & Clonopin daily, and Darvocet as needed

TheChickenPrincess
Veteran Member


Date Joined Jun 2010
Total Posts : 554
   Posted 8/18/2010 6:33 PM (GMT -7)   
Welcome Lolotte,

I can't write a lot right at the moment - but it caught my attention when you said how sore he is after light exercise. Go lighter. Seriously. When I first started with this, all I could do was 3 minutes of slow walking on the driveway. That was all. Then my hips would seize up and I was done. I kept doing those 3 minutes though, every single day. I'd try to add a minute when I felt like it was possible. Sometimes I'd do two different three minute sessions because longer times were simply not possible - but multiple shorter sessions were. The key is to take it easy. What seems easy in our heads is not easy in reality when you're just starting out with fibro. I can run around the grocery stores now (years later) without much trouble at all. So please, ask him to break it into small chunks of walking and swimming. It will come with persistence, but if you get too sore from one session you'll put yourself (himself) backwards in progress.

Hope that helps a little!
Why my username? It is real life nickname. I love chickens. Will have my flock of hens one day! :D .............. DX'd with Fibromyalgia, chronic hives, sensitivities and allergies, migraines with auras, tmj, and IBS. Not sure what else!
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