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MrsP0721 posted:
I'm new here, I'm a 28 year old, married, SAH mother of 3 (10 son, 6 daughter and 3 son). I was diagnosed with Fibro in April, but have been dealing with the issues since the birth of my son in July '08. I have a loving husband who is so understanding, thank goodness, but I'm looking for someone I can talk to about my pains and everyday struggles without feeling guilty. I know this 'condition' isn't my fault, but I feel like if I talk to him too much about it that he'll see it as an excuse to be 'lazy'. My mother, for as long as I can remember, has complained about every ache or pain or cold or cough and it's caused a lot of people to think she's making it up for attention (which fits her personality) so I've always thought, if I complain about something too much, people will think I'm making it up for attention. I just want to find people who relate and I can talk openly with and not feel judged.

I've got all these emotions, from sadness to anger to guilt and it's a daily struggle for me. I also have a tear in my spine and 2 buldged disks so I have more then one 'life sentence' as I call it, they'll never go away and will more then likely only get worse and it makes me so angry. I'm constantly having to tell my kids that I can't play right now, I can't do much of anything and it really pisses me off (excuse the languge). I'm hoping that things will actually get easier, I keep telling myself that it's new to me, I have to learn how to deal with it, find the right combo of meds, but I'm also worried about when I do find that right combo (like right now, I'm ok, I'm taking Cymbalta for Fibro and a muscle relaxer and norco for my back), that my body will get used to them and I'll have to start over, or start increasing doses, I've been on my norco for only a few months and it's already losing it's effectiveness.

Anyway... is there an online support group, chat type thing or anyone I could talk to directly (emails or what have you)? How do you manage? Who do you talk to?

Thanks for listening!
Jennifer
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kariUT responded:

I agree that it helps so much to talk to people that are going through the same things I am on a daily basis. It lets me know that I am not alone, and I am given hope as I see people who are "making it" with such a diagnosis as fibro.

I can talk to my mother about the pain, but I choose only to do so when the pain gets bad. I know I will have pain every day and I feel that I would be a broken record if I talked about it all the time, so I choose to let her know only when I am in worse pain than usual. I feel in these times that I need to tell someone—it helps me handle it better for some reason. I purposely have not told anyone except my family though, that I have fibro. There are times when I physically cannot handle activity, but in general I didn't want to give myself an excuse to not do things, if that makes any sense. This past summer I learned to wake surf, I have gone to parties and gone dancing with friends, I have played with my baby cousin, and I will go rock climbing soon—things I never would have done a few months ago. I refuse to sit back and be in pain and not live—a stubborn streak that sometimes gets my into trouble because sometimes I over-exert and refuse to take it easy when there is work or play to be done.

Even still, I get frustrated and angry, that the fibro is not going to go away, and that I will never be completely out of pain. I feel guilty that if I had not had a few months of extreme stress and fatigue (I was working 5 jobs saving money for nursing school) that the fibro may not have surfaced. I want so bad to wake up and not be in pain—I want to be normal. Do you feel this way?

I don't know if you have found this, but I find that when I don't take my meds on time that the pain gets crazy bad. When I take them the pain goes back down to a more normal level (5 or 6). At one point I felt the same as you that my meds were not working and needed to be adjusted, but then my mother and doctor both saw that when I feel better, I do more and then pain gets bad. But that the medications are working. This is just me. Your meds might have to be adjusted someday, but I am happy for you that you have found a workable mix of medications and that your doctor is willing to work with you.
 
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strengthening responded:
Jennifer, I sooo understand all that you wrote. I just posted here for the first time and hour ago. If you are surfing the discussions you can find it titled, New to Discussion. Looking to share.

I am a SAHM of 4 and have struggled for a year. I am such a ball of emotions at any given time: angry, sad, crying, want to sleep, in pain, frustrated and then can be positive, happy, outgoing, empathetic... I'm learning how to live. I am on cymbalta as well. I reached the lowest I've ever been in terms of depression. I don't know that the pain is better because of it be I am certainly not as depressed. The cymbalta has other side effects though that I don't like but I can manage those.

Do you have trouble sleeping? If yes, what helps you stay asleep? sleep meds? I struggle with this every single night.

I am happy to have found a way to share and talk to others. I hope that you enjoy your day today. God bless you.
 
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MrsP0721 replied to strengthening's response:
I do have issues sleeping, especially when I first started the cymbalta, I haven't really found a cure for that, not a good one anyway. I'm on pain meds for my back and honestly, I take a little more then I would during the day, at night... that's the only way I can get any sleep! Now that is just recent, I had a medial branch block on my back a week ago and since then, my pain has at least doubled so its that only thing I can do right now, once I get my back pain under control, I'm going to see about a sleep aid. Everything is all so new to me, all the meds and information, I have hope that one day I will figure it all out and be more in control of the pain, but for now, it's a day by day thing.
I hope you have a great day as well!
 
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namann replied to strengthening's response:
hi, I'm new to this blog and newly diagnosed about a month ago. Fibro patients don't sleep well because of a lack of the deep, restful sleep cycle (non-rapid-eye-movement sleep) and therefore get up in the mornings feeling tired. A doctor specialising in chronic pain suggested I use 2X Melatonin 3mg tablets about an hour before bedtime. Go to bed at a specific time every night to try and regulate the sleep patterns and no caffeine. Prozen (suntheanine 100mg) 2 tablets in the morning helps to make you feel more alert yet relaxed and not drowsy. I use paracetamol and Ibuprofen for the pain. Hope you find something that helps.
 
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limpylizard responded:
Hi Jennifer, I am also new to this site, and a little nervous about complaining to much also. I am way past 28 but was there once, I am always sorry to hear of someone else with fibro, I have dealt with this issue for over 20 years now and I to get angry about the many limitations FM has had on my life style. I finaly, about 3 years ago, was hooked up with a pain managment Dr, well actualy I changed Dr's in the same practice, my first Dr and I were not at all compatiable, but the second was a blessing. He has worked with me and as of now am on Cymbalta Nurotin and Hydrocodon 10/325, it has helped to the point that I am able to participate in my life again. I am an avid gardner and love nature. I think sadness is always there just under the surface for all who have to re-adjust their lives. As for guilt please just open your inner window and toss it out! I have come to the conclusion that if people can not accept who you ARE instead of making you feel guilty for who you are not they don't deserve a place in my life or yours!!!! It took me quite a while to come to that point, and I believe in the long run it caused me alot more pain. I have also been diagnosed with Polymyalgie? I have not done much research on that, but just figure FM is enough of a pain in the keester (pun intended) to deal with. I have found humor helps alot, especially when the Fibro is kicking my hinney, I have a good support system even though they don't entirely understand. I know it is hard especially with 3 children, but please don't think of FM as a life sentence, instead as a bump in the road, medical research has come a long way and made many strides since I had my inital diagnosis. For a long time Physicians would label you neurotic or a hypocondriach if you complained of something they couldn't put their finger on or didn't show up in a x-ray, but now if you have a good Dr they are more accepting of the fact that not everything can be seen through a microcope or on an x-ray. If you would like someone to complain to, a sholder to cry on or just to vent I would be honored to take on that job, I have big ears and can put them to good use. I sincerely wish you a wonderful day X365.
 
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rickie3grandsons replied to limpylizard's response:
it is good that we can talk to others that have such pain only outsiders callit complaining
 
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rickie3grandsons responded:
I can give you my email I have 4sons and 3 grandsons I have not been able to work now for 5 yrs and I feel OUR RETIREMENT plans have been destored....I worked in a factory for 25 yrs and it closed and went to Mexico and then got a job that I loved in a big retail store was manager there was a lot of stress and you know .....well I just went down hill and it was terrible they sent me to specialist (waited 8 months) and he told me that I have fybro really bad case and has had it for a long time I have a very high pain tolerance and some days I cannot even get out of bed it is horrible so .....I was on Lyica for 3-4 years 12 pills a day of 50mg's and I think I was just ammune to i...t it was my last straw....well tylenol 3 with codeine and waiting for the DR.to fill out papers for medical marijuana I need something for the pain somedays it is so bad I could just do myself in I take vit d and 3 Omega 3 cap's.. vit's and cymbalta . if I had one wish it would not be to win the lotto it would be not to have fybro and have our retirement dreams come true.and to enjoy our grandchildren more we are only 54 and 56 yrs old so we are still very young please write back sarah_robinson45@yahoo.com
 
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pcm_mommy responded:
Hi Jennifer. I am 35 and was diagnosed last year although I have been having the aches, pains, stiffness, etc for several years. I am also still learning and trying to find ways to deal with daily life. I work full time and have 2 boys (11 and 14) plus I just got remarried last year. I find it difficult to get up in the morning between the pain and stiffness and then feeling so exhausted. After moving around a bit, the stiffness eases. I am exhausted all day at work, find that things stress me out more than they used to and by the end of my work day I don't really feel like doing anything but going to bed. My boys are active in sports and school activities and I feel guilty for not being perky for them. I am taking Cymbalta but have gained about 30 pounds over the course of the last 12 months. The Cymbalta seems to have calmed the major pains but if I do much physical activity I hurt badly for days. I also have 3 bulged disc in my back that I deal with as well. I do not take a pain killer though. I have heard that massage and meditation work but I haven't tried it out yet. Like you I am searching for ways to manage and be able to do more with my family. Just wanted you to know you are not alone!
 
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feelingunsupported responded:
Hey Jennifer. I'm quite a bit older than you (47), 2 daughters (13 & 23), 23 year old grown, , with 2 precious little girls (Gammy's angels) and a military husband, but soon to be single I was diagnosed with Fibro in August of 2013 but the symptoms started in January of 2013 immediately after I had a level 2 fusion on disks C3/4 & 4/5 in December of 2012 that resulted from a car accident in February of 2012. After the surgery I was told I should immediately feel better than I did before the surgery and within 6 weeks I would feel like a new woman. I never felt an ounce better. Day by day I got worse. The surgeon had me doing physical therapy, pain management (injections, pain meds, steroids, muscle relaxers), chiropractor and massage therapy. Massages felt great but within 15 minutes afterwards the pain was back. Nothing else helped at all. Over a 6 month period I had 2 repeat MRI's and both showed the plates were perfectly in place and everything fused properly. I even researched myself and tried reflexology and acupuncture. The pain, fatigue, headaches, tiredness, memory loss, anger, depression, etc. was progressively getting worse. I finally decided myself to see a Rheumatologist and after running all labs to rule out Lupus, Rheumatoid Arthritis, etc., I was given the trigger point test for Fibro and there you go Ms. Walker....you have Fibromyalgia. But guess what??? There is no cure, so I will be turning you back over to your GP and you and she can work on finding a combination of meds that work together to help ease your pain and fatigue and depression. So, it's been 1 1/2 years and I still have not found a happy place. The Rheumy that diagnosed me didn't know much about Fibro so after my GP and I struggled for over a year with no luck, I left my North Georgia Mountains and headed to the city to a well known Rheumy who specializes in Fibromyalgia and other non-curable diseases and disorders. He immediately started me on Cymbalta and began a series of blood work because at the time I began seeing him, I was extremely sick with Bronchitis and a sinus infection and had been for 2 weeks and wasn't getting better with the antibiotics I was on and also had previously had 2 steroid shots. After 10 weeks and multiple rounds of blood work and my anti bodies continuing to come back low, I was diagnosed with CVID (Common Variable Immune Deficiency). My immune system was no longer fighting off infections and I would have to start monthly IVIG infusions asap. These would be done every 28 days for the rest of my life. Not good news at all when I went to the Rheumatologist to get help with my Fibromyalgia issues and now I find out I have an auto immune disease but ... he told me that the IVIG has also been known to relieve joint pain in Fibro patients. I felt hope for the 1st time in 2 years. He said his pre-cert nurse would begin the paperwork immediately and submit to my insurance company for approval. That was on a Friday. 1 week later I called to check the status. The pre-cert nurse knew nothing about it. I sunk. She assured me that she would get right on it. The following Tuesday I called my insurance company and they had received nothing. This went on for 2 weeks, including me leaving messages for my Dr. to call me but he NEVER returned my calls and his nurse never started the paperwork. Oh....and all this time I was having crazy side effects with Cymbalta and leaving detailed voice mails for my Dr. and also with the staff because it was scarring me. No one would help. I had to take the capsules apart and removed 7-10 molecules per day to wean myself off of them. After all of this....back to square one....new Dr., new blood work and no meds at this time other than 1/2 Percocet at night and Requip for restless legs. My only support is an out of town friend with Lupus because, as you know, if they haven't experienced it they can't understand what we are going through. Love to chat anytime. Ann
 
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feelingunsupported replied to strengthening's response:
My doctor had to start me on Ambien to help me sleep. I work full time and was falling asleep on the 15 minute drive to work and could dose off sitting straight up at my desk. It was horrible. I still have horrible pain when trying to roll over during the night which wakes me up but at least I'm able to fall back to sleep. I was on Cymbalta also. I told my doctor it wasn't helping me at all with the pain and I was having weird feelings and thoughts (seeing things move that weren't moving and ringing in my ears). For 2 weeks I left messages for my Rheumy to call me regarding these issues but never received a call back. I had to trust google by asking for help on how to wean myself off. Now the severe depression has set in. There are days when I can't control the tears and the will to live is just not there.
 
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herbalx3 replied to feelingunsupported's response:
you need to make sure your getting like 9 hours a sleep a night. and when you take it get right into bed. I use to be on it and i was falling all over the place and i use to skeep walk and eat in my sleep. So be careful because thats a huge side effect.
 
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fibro82 responded:
Wow, Jennifer, I feel like your situation sounds very much like mine, even the mom part. My mom is supportive, but also very whiny and always seeking attention. I have a wonderful husband that is greatly understanding. I have a 14 month old baby boy that is the light of my life. I just got diagnosed about 8 months ago. Currently I take Gabapentin, Cymbalta and Ambien for sleep. If I do not get enough sleep, my husband is better off leaving the house because I am on a rampage. I am also pissed because I feel like in order to make time and energy for my baby, work a full time job and "do the things I need to do for me such as go to Chiropractor", by the way I have scoliosis as well. There is no time at the end of the day to let my husband know how much I appreciate him.
I often think about the future and how this will affect my baby. It is really hard.
 
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bagelmom22 responded:
I just lost a big response I typed. Auuugh! But I will say I have read some, although not all of the responses. I want a lot of the same things. To talk to ppl who understand. To learn what works and what doesn't. I have fibromyalgia for years, but have had a flare up this spring that left me reeling. It is difficult to get out of bed or even a chair. I can't do much. I don't walk well. I work 2 three hour cleaning jobs a week. I am so exhausted when I am finished!! I also have a sick lady I sit with 4-5 hours a day. I feel like I can't give her my best after all that cleaning. I take a large variety of drugs for depression and anxiety. One is Cymbalta. My doctor just doubled to 120 a day and that helps a lot. But not enough. You know. Thanks for listening. Sometimes I just need to rant. Jennie


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