Status
Not open for further replies.

Lardeelion

New member
Joined
Nov 30, 2013
Messages
7
Diagnosis
11/2013
Country
US
State
WV
Good morning folks.

Although I'm officially just starting this fibromyalgia journey, of course I've been on it for years. It started right after my first son was born 7.5 years ago. Back pain, neck pain, headaches, insomnia, depression....you all know the rest. Massages and physical therapy and chiropractors and acupuncture and pills and more pills and my husband doing all of the laundry and cooking while I sit on the couch feeling guilty.

My mom is in her mid 60's and has Sjogrens and scleroderma and all sorts of wretched auto-immune things, and I worry that I'm next. I used to think she was so pitiful and not understand why she wasn't able to help me with my little kids. Now my boys, 3 and 7, ask me why I'm always sick and look at me with that same pitying look.

This morning I woke up feeling like somebody punched me in the back dozens of times, like it should be covered in bruises. My neck has been a mass of horrifying knots for years. My headaches make me vomit sometimes and my friends think I'm taking way too much psych medication for depression and anxiety. I almost always lie to them when they ask how I'm doing because I get that, "Wow, why are you so sick all the time?" look.

Anyway, I try to take comfort in the fact that I can still be a pretty good mom and that I have a very understanding husband. I'm glad to have found this forum!
 

sassy13

Active member
Joined
Nov 18, 2013
Messages
51
Diagnosis
06/2011
Country
USA
State
Tennessee
Hi Lardeelion,

Welcome to the forum! I'm new here too but have felt welcome and have learned so much from others. It is nice to talk with others who know exactly what you are going through.

I know the guilty mom feeling. It is terrible! I was diagnosed a few years ago and still struggle with it every day. One thing is right for sure, you CAN be a really good mother. I have found on principle that is helpful and i hope it will help you. I operate daily on what is called The Spoon Theory. It is a great way to explain to your children the way mom is feeling. You can google it but it basically means every activity we do requires a spoon like getting dressed, making a bed, etc. We with fibromyalgia have a limited amount of spoons to use on activities during the day. It will be up to you how to allocate them. Sometimes there are things not worth spending a spoon on. If my boys have a sporting event in the evening, I reserve my spoons for that. I explained this theory to my boys and it made so much sense to them. One day after a wrestling tournament, an all day event, my son comes home and says Mom, I'm out of spoons. I'm gonna go lay down. I was so happy he got it!

I also understand the worry about autoimmune diseases. My oldest sister has MS. She passed a couple years ago. I always feared it for myself. Unfortunately for me I do have autoimmune issues. I have psoriatic arthritis, a rare autoimmune liver disease called PBC, fibromyalgia and CFS. Now my greatest fear are my sons. I pray they do not get my genetic disposition for autoimmune disease!

Wishing you the best!
 

MizzDeeDee

Distinguished member
Joined
Sep 24, 2013
Messages
129
Diagnosis
01/2009
Country
us
State
Va
Welcome to the forum! I'm sad that you have to be here, but glad that you found us. I'm hoping you'll get the support you need, here.

I absolutely think fibro is related to other autoimmune issues. On my dad's side of the family, literally every daughter of his siblings has an autoimmune issue, including myself. I've also noticed that many people have fibro in addition to a diagnosed autoimmune disease. I've also been told that fibro can run in families. There certainly must be a familial connection.

Are you talking about saying your fine to a doctor or a family member? With the family member or friend, I understand. I think sometimes people get sick of hearing it. I've adopted that mentality, too. If it's a doctor, please make sure you're telling them everything. It's there job, and if they don't want to hear it, then you need to go to someone else.

Don't feel guilty. I know that's hard. I used to feel that way, too. The thing is, that you have limitations. It's better that your husband picks up the slack as opposed to you getting worse. I'm sure that he understands that.

I hope things get better for you and you get some relief!
 

Trellum

Legendary member
Joined
Jul 17, 2013
Messages
1,788
Reason
DX FIBRO
Diagnosis
04/2011
Country
NL
State
NL
Hi Lardeeleon, it sounds like you're having a hard time right now, but don't worry! It does get easier... as for your mom, when I was younger and my mom was worried about this health issue she has been dealing with for years I didn't really pay attention. Funny it had to happen to me as well so I could finally understand what she was going tru... too bad mine started too early and really agressively. But rest assured your kids will understand what you are gong tru... once they are old enough to understand. When they are young they really don't get it, but as they age they do :)
 

DebraP

New member
Joined
Dec 1, 2013
Messages
2
Diagnosis
04/2013
Country
US
State
Nebraska
Hello. I don't know what to write so I will ask a few questions.
Meds: I was on Cymbalta for approximately 6months but it didn't help my pain. Last Wednesday the rhumatologist took me off cymbalta and put me on savella. I've been taking higher doses every 2 days. Now I'm on 25mg twice a day and itch everywhere. Is this a common side effect? I guess I should call the Dr. in the morning? Cried yesterday and today for the first time in months and feel very fragile. I have a local friend with fibromyalgia who I called last night for the first time. I explained the severity and location of my pain. She said that I am probably having a flare up. This was the first time I had heard that term and immediately thought, "yes", that sounds right.
I would like to know what medications other than the two I've mentioned above have helped relieve the pain.
I've worked full time for 40 years and currently find myself in the position of not wanting to go to work, to see people and solve their problems or to "be on" for everyone. I don't have the energy or the mental capacity to do it. I'm wondering if I ever will again and that frankly makes me angry. I'd say besides having all of the symptoms that are associated with FM I am just angry.
I have O Artritis and Osteopenia. I've had fatigue and pain for 15 years but could work through it. Now standing for more than 5 or 10 minutes will cause severe back and neck pain and yes, the heating pad is my best friend. Thanks for reading as this is the first time I have written about this and sought information from peers.
 

Lardeelion

New member
Joined
Nov 30, 2013
Messages
7
Diagnosis
11/2013
Country
US
State
WV
Thanks, everyone. Nice to be among friends. And I like this spoon theory! I'll have to Google it.

I'm always up front with my doctor. It's the super healthy, fit friends who never understand that I'm not quite honest with. Just easier than seeing that look on their faces.

Also, insomnia sucks. Hello 3am.
 

sassy13

Active member
Joined
Nov 18, 2013
Messages
51
Diagnosis
06/2011
Country
USA
State
Tennessee
DebraP,
Savella made me cry like a baby over everything! I also tried Cymbalta, but it did not help my depression. In fact, it may have made it worse. I now take Prozac, thank you Lord, for depression, Lyrica, long acting Tramadol and Celebrex for pain.
I also understand how hard it is tie maintain that work schedule. I have been a nurse for 20 years. I was a scrub nurse when it started. It got to a point I could not hardly make it through even a simple quick procedure. I eventually quit, not knowing what was wrong. I thought I had been a bedside nurse for too long, so I tried other things including a desk job to see if it would help. I went part time and now I am not able to work at all. I do good just to go to the grocery store!
Also, I believe when we lose something, whether it be a loved one or a life we once knew, we will go through the stages of grieving. I know that anger you are feeling! It is certainly one of the stages of grief. I have not quite reached the acceptance phase of my situation. I just hope it is right around the corner. Honestly, joining this forum has helped me deal with my issues in a much healthier way. I am so glad I am not in this alone.
Glad you joined the forum and I hope you find it helpful.
 

1sweed

Moderator
Joined
Feb 4, 2013
Messages
1,956
Reason
DX FIBRO
Diagnosis
01/1995
Country
US
State
Pennsylvania
DebraP,
You may very well be suffering from an allergic reaction to the medication. Call your doctor as soon as possible and don't go any higher doses of this medication. Try taking some allergy medication and see if that helps. When you encounter itching or rashes, or hives with a medication always take it seriously.
Some side effects are normal, but others can be very serious and even deadly. Please check with your doctor and let us know how your doing. :)
 
Status
Not open for further replies.
Top