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Hello my name is Paula and I am 40 years old and have autoimmune disease and suffer from Fibromyalgia, Irritable bowel syndrome and Interstitial Cystitis. I am a Registered Nurse and have been off from work since Dec. I am married and have a daughter Tiffany who is 18, Robert is 15 and Breanna is 3 months old. My complicated pregnancy is why the doctors put me off work but it was such a challenge to be pregnant with my illnesses. I had to stop most of my meds and so I stayed in so much pain. I just assumed I would go back to work after the baby was born but the pregnancy has advanced my disease and the doctor told me I may never be able to go back to nursing. It has been a big blow to my self esteem because I loved my job so much and when my co-workers ask when I am coming back I lie and say I am staying home because of the baby. I had purchased LTD insurance when I worked so I do have money coming in but I am not wanting to sign up for my full time disability like the doctor wants me to. I do take pain medication to help me be able to partially function at a decent level but lifting and walking for anything but a short distance and the Fibro hits hard. I have about two surgeries a year on my bladder to keep it under control bur no one has any good advice on the Fibro. I want my life back but right now it is my brains main function because I hurt most of the time. My dads wife has Fibro. and she said she has never seen anyone else progress so quickly. I feel like I am not as good a person as I used to be. Its hard to keep my home as clean as I like, I can't do as much with my older kids and my husband, well that is a story in itself. He is one of those husbands my friends have said they wish they had. He helps around the house, care for the children and catches me every time I fall. He still wants and loves me but if I am going to be on this chat line I am going to be real. Since I have been sick which is about 3 years now, even though I am a nurse, common sense has went out of the picture. I try so hard to make myself pain free so I can do what I used to that I over medicate myself and end with at the end of the month with no meds and pain beyond what I can bear and end up in the ER. Is this hard to tell that I abuse my meds, no not really its a relief to tell the truth. My husband is well aware of what I do so he locks up my meds and lays them out for me when they are due. There really isn't a truly pain free day is there? I need any tips that others may give on how to get control of my pain without doing things that only hurt me later on. Other than chronic pain that runs my life, I have a great life. A great husband and three beautiful kids and the least being a blessing I did not expect. So if I have so many great things in my life why am I so unhappy sometimes?? Any advice would be great. I hope that joining this forum will help me gain insight to how others gain control over their pain. thanks for listening and God bless, Paula
Hi Paula. First welcome to this place, I am sorry to see that it is not more active. I am guilty of not coming here on a regular basis. You see, I have chronic pain and often it is too much for me to sit at the keyboard. I want to encourage you to persevere in finding a support group. This place has lots to offer and lots of information Karen Lee Richards the moderator has knowledge about fibro see her profile: Karen It is just that the traffic is still slow on the forum. The chronic pain one is better. Have you try to create a share post, they seem to have more readings. I feel for you, I do have pain 24/7. Pain meds are helping a lot but I would like to have my life back too be like anyone else, not have to take pills gadgets, be slowed by pain etc. I feel for you for having pain and having to look after a baby, I have a gran-baby 2 months I do what I could to help my daughter but just holding the baby causes me so much pain. There were here last week and I swore that pain won't get in the way for me to love that little one ...ouch ! I am paying now, big price but the smiles I got from the baby worth more than a million and few days of pain, at least it was pain well spent on if we can say this. Don't despaire and keep trying here until people reply to you, I wanted to write to you 2 days ago but my PC or the net were not cooperative, it's why I did it fist thing this morning. We are quite alike in many ways except for the age, you could be my daugther and I would hate to see her hurt like that. Hugs to you. Marie
This message has been edited. Last edited by: Marie,
It's such a plesure to meet you hon. Your post really touched my heart and I really would love to help you in any way I can. I apologize for not responding sooner, I've had some big changes and issues going on in my life recently and my posting and time on the net has been really curtailed and minimized to only a short time very late at night. It's 2am now and I've got to get to sleep, but just wanted to let you know that I'm here and would love to communicate with you too. I'll send you my email in a private message and your welcome to email me too.
Hugs & Welcome Betty
Do not be dismayed by toil or suffering, nor by the meager fruit of your labors. Remember that God rewards not according to results, but effort.
Blessed Zefirino Agostini
Posts: 1190 | Location: Home in Washington State | Registered: 11-07-2007
I see by your post you have two problems at least. Chronic Interstitial cystitis and Fibromyalgia is a nasty combination! (Like I needed to tell you that!)
Treating the Interstitial Cystitis effectively will reduce the symptoms of Fibromyalgia. You probably have urge incontinence with the Interstitial Cystitis. If you urologist has done his best to control that, and hasn't succeeded there is one more thing to try. The Interstim made by Medtronic is very effective in controlling urge incontinence and nonobstructive retention. I am sure that alone would make your life better.
I have placed the Interstim in a number of patients with very good results. Go to the Medtronic website to find a physician to discuss this with.
Fibromyalgia does respond fairly well to Lyrica in moderated doses. My wife has her symptoms well controlled with 75mg once a day.
Are you having trouble sleeping? Do you snore? You may need a sleep study for possible sleep apnea. That can create problems with fibromyalgia also.
Chronic Pain Community 
