Mom with Fibromyalgia

Sarh - posted on 09/22/2010

Yea, but do I have to pay for that?? Plus, if they try to do an eval, I've gotten so used to the pain from it being untreated for so long, I work through it and ignore it to the best of my ability, plus the doctor I seen just had me walk and what not.

Linda - posted on 09/22/2010

You should call the 800 number for Binder and Binder, I think everyone is denied they apply for disability. You need an attorney. It makes me so angry, like we want to feel this way and not work, ugh! Good luck.

Linda - posted on 09/22/2010

unfortuneately people need a visual to understand ones disability to do something. I have R/A. I know what it's like not to be able to open a jar, and need to ask for help. I have to admit, when I was a healthy teenager, and my mom had R/A I wasn't so understanding or empathetic. I think it is a teenage thing. Maybe you could just ask them to picture being in your shoes. It is hard to be a mom when you don't feel well. :(

Sarh - posted on 09/21/2010

Fern I guess addicted was the wrong choice of word, I was at a lose of words and was trying to say as you did about the depending on them.
I don't have RA, but I have Ankylosing Spondylitis which is a chronic inflammatory arthritis and autoimmune disease. I was diagnosed w/this when I was just 17 or 18 yrs old, but I had been suffering from it since I had my daughter in Jan. 2006, they could not figure out what was wrong w/me, did tests after tests, x-rays, CT scans, and even MRIs. It got to the point that my mother made me an appointment w/a MAYO clinic in Minnesota I believe, then I went to a different Rheumotologist and she finally diagnosed me, then I was having pain else were then what the A.S. would cause so I was also diagnosed w/Fibromyalgia. I was working 2 part time jobs as well and also going to nursing school (I graduated high school at 17 and started college right away, even w/having had my daughter at 16). Even being on the medication it was hard for me work one job let alone both, plus school, plus raise my daughter the best I could. It didn't help that she was a big baby (born at 9lbs 13.5oz) and it was difficult to carry her. I've had to try to maintain a job to support her and I was denied disability by a doctor in which my Rhuemotologist sent me to. I have worked since I was about 10 yrs old (at my uncles restaurant), and it drives me crazy and makes me feel useless to not even be able to clean up my house or not be able to open my daughters apple juice or apple sauce, etc. Thank fully my fiancee is working and allowing me to stay home and nurse our son. I really want to go back to work, but I don't want to go back on the medication, but I also don't want to be in pain anymore. I can't even stand for a short period of time while holding my son (he's about 15 wks old and 16lbs) w/out my back killing me and having other unnecessary pains from the Fibromyalgia.
I will check out Safe Fetus! Thank you! Also, I was on Percocets, they don't fully help, but I don't know what else to suggest to my doctor (she asked me what I wanted to try for pain). I've been in the ER from falling and bruising my tail bone (caused even more pain in my back) they gave me morphine and that did NOTHING!! Plus, I have a very high pain tolerance... I gave birth to my daughter who was 9lbs 13.5oz w/no meds and had to have a surgeon called in! The surgeon, nurses, and doctors all told me I had a high pain tolerance... which I don't understand how I have Fibromyalgia then...? Am I misunderstanding Fibromyalgia?

Fern - posted on 09/21/2010

@ Sarh: I took a very strong narcotic the *entire* time I was pregnant and while I nursed. He then weaned himself gradually and he never showed any signs of being dependent on my medication. Babies can't really be *addicted* because addiction involves behaviors such as buying street drugs, stealing meds, lying to get meds, etc. Obviously babies can't do those things nor do they have the mental ability to be addicted. However, they can become physically dependent on your meds, but if you use them minimally and then wean gradually, he shouldn't have any problems.

As far as your family saying if you can do without the meds while nursing that you can do without period, is a misnomer. Nursing produces hormones that help block pain and allow us to relax and nurse the baby. These can help us to deal with pain that normally we wouldn't be able to handle. Yes the Enbryl is not safe for nursing. If you are ever in doubt, there is a great website called Safe Fetus that gives you information on individual drugs and whether or not they are safe for pregnancy or nursing. Safe Fetus says Enbrel is a pregnancy category B, which is relatively safe. But it is not recommended for nursing, basically because they don't know if it will hurt the baby or not. Do you have RA? I don't think you could hold a job, but not because of the meds, but due to your pain and your lack of stamina. I have these issues too. I was 27 when I was diagnosed and I had two small children at the time. They are now grown. One is in the Army and the other is a fire fighter, but I have a 3 year old who will be 4 in Dec. He is the light of my life and the reason I keep going despite incredible pain. But my point about age was that I was holding down two part-time jobs, going to nursing school, and taking care of my house/family when I was hit with this. I tired to keep going pushing through the pain, but that only made it much worse. I filed for disability 3 years after my injury that caused the crhonic pain! I tried several part-time jobs, changing my duties, etc to try to find a job I could do, but I couldn't be dependable due to the sleep problems and the unpredictable nature of my pain.

Sarh - posted on 09/21/2010

Fern, they said I could take the narcotic as needed, but they also said that baby would become addicted to it (I half believe it and half don't). However I guess the injection was a definite no. Ibuprofen and Tylenol do nothing for the pain!! When I would take the narcotic I noticed no change in my little guy. I know my family is going to give me hell when I stop nursing and go back on the medications because to them if I could go right now w/out the medications then why would I ever need it?! Also, right now I can only do the dishes then sit, or pick up just a few things and then I have to sit. I wouldn't be able to hold a job right now, not on the medications.

Fern - posted on 09/21/2010

@ Lisa I too went through this with my family. I have had chronic pain now for over 17 years. It took time and patience for my family to understand I was not faking or exaggerating. Now I have their full support. So you just have to stick with trying to educate them. I gave my husband a lot of reading material in the early days and if he wouldn't read it, I would read it to him! Once he started sticking up for me, the kids did too. Hang in there!

Fern - posted on 09/21/2010

@Sarh: Did they really take everything away from you that you were using for pain so you could nurse your son? I was allowed to stay on my narcotic, a muscle relaxer, and a sleep aid during my pregnancy and then they added Motrin to the mix after he was born. I nursed him for 18 months. He had NO problems related to my medications!

Kay - posted on 09/07/2010

Well it tends to get very aggravating as no one knows how we really feel but us. We women tend to push ourselves to the limit trying to care for our families and we let ourselves go and not take the time to care for ourselves. If you have a good doctor maybe her/she needs to talk to your family and explain the situation to them. Have you printed out any material from the net giving symptoms, and illnesses that go along with FM? I do that from time to time. But my kids are grown thank goodness.......but not sure my husband understands sometimes. So i send it to him.

Suzanne - posted on 09/02/2010

Suggestion from my husband: Get a strap wrench from the auto parts store. We tried to copy a picture in, but it didn't let us. Just type it into your search engine to get a good picture so you know what you're looking for. He says that it turns pushing force w/ leverage into squeezing and turning force and will fit on anything you can fit in the strap. If you have something small that you have a hard time with take it with you to the store to get a good fit.

Sarh - posted on 09/02/2010

I am in the opposite boat as you! I just turned 21 and have had Fybromyalgia and Ankylosing Spondylitis since I had my daughter January or 2006. My mother and her partner, along w/other family members think that I am being a hypochondriac or over exaggerating when I say I'm in pain or say I need to take my pain medication. I don't see how they don't understand that I am actually in a lot of pain. What I don't understand is that they say fybromyalgia is from sensitive pain receptors or something like that, but I gave birth to my 9lb 13.5oz baby girl at the age of 16, with NO pain medication, needed 64 stitches from 2nd & 3rd degree lacerations, and had to have a surgeon called in! When the surgeon came in he asked what kind of pain meds were on board and everyone in the room looked at each other and then kind of chuckled and said NONE! I was told by all the nurses, doctor, and surgeon that I have a very high pain tolerance. I delivered her and went through labor w/out the pain meds and w/out screaming, crying, yelling, etc.
It kills me when it is just me and my daughter and son (12 wks old) and I can't open my daughter's juice and she has to have water all day because there is no one else to open it for her! And other things someone w/out Fybro may think is just silly.

I am breast feeding my 12 week old son so I can not taking my Enbrel injections once a week and I can't even take my pain meds. or my anti-inflammatory meds, all I get is Tylenol! Which as I'm sure you know, does absolutely nothing!!
I'm very sorry that your children are rude to you! Just remember to stay strong!

Angella - posted on 08/31/2010

I have the same problem with my teen and hubby. Both seem to forget that I'm sick.. and I can only complain and plead so much. I'm pretty much stuck with little to no help most of the time. I suppose that it's partially my fault for not advocating for myself enough but... where's the compassion??? Seems so unfair when my life is dedicated to helping them! I look forward to seeing if anyone has any helpful tips for this issue!

Carrie - posted on 08/30/2010

Lisa,
I'm sorry it is hard especially when on the days that you can do for your loved ones you give your all. We expect, hope that they get, understand when the next time it doesn't happen, Suzanne is my friend and often reminded me of the gift my daughter received in growing up with my illness she's six, because she gets it, rather than it being a burden to her. Draw strength from your friends and I pray that those who don't get it never have to feel what I do because I don't think they could walk a day in our shoes. gentle hugs

Suzanne - posted on 08/30/2010

My mom was in your shoes for years. Way before FM was really a diagnosed disorder my mom suffered horribly and we all (include MD's) thought she was just a hypochondriac. Now I, also, live with the disorder and am fully disabled. My biggest suggestion is to take your kids to the gym. Let them build up that really big lactic acid burn, then in the morning ask them how their muscles feel. It is a way to get them to understand. No one can see how sore they are, but everyone knows it's there.