I am a mother of five beautiful boys, with a loving supportive husband(thank god),I am a director at a child care facility who had everything going well. I delivered my youngest son in April of 2012 and starting having endless headaches and confusion. And then progressed to pain all over , I have ulcers in my mouth. ,my hands feet, legs go numb while walking. I have had an MRI , been to an orthopedic dr, physical therapy , been given anti inflammatory meds that my stomach can’t handle. I see a neurologist for.headaches and take topirimate twice daily which helps some although he doesn’t believe there is any nuerophathy, oh and I should not take pain meds and should just hurt instead!in January I finally got into to see a pain management specialist because my PCP will not prescribe narcotics and was given 2 lortabs daily. It wasn’t really enough but when u have been in pain you are grateful for whatever help you can get at times. After my 3 rd visit finally got the nerve up to ask for an increase so we went to 3 times daily. He said if we need to go to 4 times we will. 3 a day during the week is fine but I have been having flare ups constantly and am tired of being in pain so I asked for 4 times a day. I was the perfect patient ( according to my dr) but this time I was treated as a problem. He had me as having chronic back pain but when I told him I had Fibro he shut me down. Told me it was caused by depression!!! And he was going to do me a favor and not up my meds. I am sure there are some that will think negatively of me but please remember I am just sharing my frustration. Called my rheumatologist and had my nuerontin increased thank god I was off though cause I was dizzy and felt well (high) I don’t know how else to describe it.this is where I am now still in constant pain that affects my ability to be a mother, a wife, work,I am questioning how much longer I will be able to work. It is not depression that caused Fibro but Fibro that is beginning to cause depression. I just want some relief and honestly I don’t care how get it anti depressants, pain meds, anti convulsants, I don’t care! I just want to be able to take care of my family the way I once did. Well there is my vent/ story . Thank u for reading if u do if not at least I got it off my chest a little:)
Well we are here for you, Shila. What you're going through is not uncommon. It is frustrating to the max! Many of us here have been through the many doctors you are describing. Sounds like your pain specialist had you labeled as a drug seeker. Bully for him. I used multiple pain meds in order to keep working, care for rapidly aging parents and care for grandchildren. Took me awhile, but I had to come to terms with my health first, so I could take care of my family.
I wish you lots of luck and send tons of love and support on this journey. I completely understand when you say that you want to care for your family as you once did.
I'm glad you were able to vent and get some off of your chest. It does help relieve some anxiety to write about it.
Hello Shila, my suggestion to you is to seek another dr. until you find one who understands that fibro is real and is willing to help you. I had to keep looking and finally found one. The second is to come to grip with the fact that nothing is going to be as it was before fibro came into your life. I pray that you will find the necessary meds that will help you as much as possible. It is really a tuff thing to deal with. I will pray for you. Sue
Absolutely, Sue. It's so important to find a doctor that understands.
The sad thing is I was so happy to have him as my pain management. He seemed to really care and like I said I think if the word Fibro wouldn’t have come out of my mouth we would have been fine. He acted like I was having more pain cause I had just been diagnosed I came to him a month before and told the pain was getting worse and didn’t have a diagnosis then.i have an appt June 8th also my 3 year olds Birthday!! I guess we will see how it goes and make a decision from there. I really appreciate your advice and words of support as I know nothing will ever be the same I cleaned my kitchen yesterday( really cleaned it) cooked dinner cleaned again and could barely walk today. It’s craziness I normally work 11 hours a day. Everything is just spiraling out of control.going to have nuerontin increased again at the end of next week since ill have 3 days to adjust. Sorry I am rambling thank again
Vent away....Vent away....that's why we all are here because we know we can. Thank you for sharing; so much of what you said I can relate too....
U are not rambling. Ask your Dr about lyrica. I'm on that. Hope it may work for u
Thank u all for being here!!! I have to increase Neurontin so high and jump through hoops before my insurance will pay for lyrica. So I guess I’ll have to wait a while I am just grateful for some answer and some medications and not going to my PCP weekly and having them look at me like I am crazy not to mention the money I save. Thanks again
Hi Shila, So sorry you are going through this, but it is true most of us can absolutely relate. I hope and pray that you will find an understanding and compassionate doctor as well as one who takes Fibro seriously and will not be afraid to prescribe you the medication to ease your pain. I know when I was in the beginning stages of Fibro, I had this young doctor and she would look at me like I was making it all up. When I asked if she could prescribe anything stronger than a Tylenol 3 for my pain she said no. I couldn't believe it! It was when I went to the ER that I was first given Hydromorphone 2mg. it took a little bit of the edge off and for the first time in months I had a little relief. When your in that amount of pain...you can't function! I was very fortunate to have found the doctor (Chronic Pain Specialist) I have now. He took me seriously and his first priority was to get my pain level down. I am taking the dreaded "narcotics" along with Fibro medication (Cymbalta), muscle relaxants and vitamin supplements. The pain is always there, but more tolerable. I don't want to live in debilitating pain and so I choose to take the pain meds. Again there is hope in that regard the challenge is to find a doctor who is going to take care of you! It is difficult too to accept this horrible illness and there is a grieving process as we all are sad that we can no longer do the things we once did. It's like mourning a death because that part of you is gone. At the beginning I tried to keep up and was in denial didn't want to acknowledge that this was incurable, but the more I did the worse pain I brought upon myself. So we have to reinvent ourselves. Don't feel bad for venting that's what this community is about to support and uplift. We all need to let it out and this is the best way to do that with the people who will understand the most! I hope you get the care you so desperately are seeking and soon! Best Wishes and hugs...Sue (aka Dreamcatcher)
Shila, Nyucenta is the new pain pill for nerve diseases. My pain center dr will only give me this + muscle relaxers. I would never think of you negatively, and I’m sure nobody else does either. That’s what we are here for hon.
Doctors-a love/hate relationship. When they hear fibro for some reason, they draw a blank and back off. Pain for other reasons is fine. We have to prove it or just pitch a fit. My manfriend goes with me to tell him I’m in pain and need more pills. I got more last time. I would take an advocate who knows you and can tell the dr about how much pain you’re in. Best wishes.
Oh God this is a cruel illness,I am so sorry that you have it because life is truly never the same again. All I can say is firstly another doctor who has faith in you is the immediate issue. But sadly there is more, I control my pain in all honesty with no tablets. I have tried them all and nothing stops the pain. I managed by pacing myself only doing things that have a high priority and resting in between No more really cleaning kitchens because when I disgust the extra pain lasted for two weeks. Not good news I know. The other thing I do that I think helps is that I have a walking program. Started with three minutes everyday for one week then five minute daily and gradually I have worked it to 30 minutes daily and I do that for five minutes every hour for six hours. That definitely works. My thoughts go out to you, just remember that doctors used to think that MS was all in the head until they examined a nerve under the microscope. So it is important to know that it’s not you it’s the health profession that have a serious deficit. My good wishes go to you. Barb
I feel the same way. I have a 7yr old with special needs and a boyfriend who puts up with me when I am taking out all my pain on him. My pain mangement doctor has been great with the medication, but honsetly I am sick of the medication making me feel out of it and I hate not being independent. My fibro was caused by a car accident. I have been with my boyfriend for 2yrs pretty much only months after my accident I am now home bound all the time and lost my job beacause I am in tooo much pain to work now since oct of 2012. I wish I could take care of my daughter like I used to by myself without any help. Driving even aggravates my leg pain. I go in for trigger point injections on Monday and I pray that they help bring the pain down because honsetly I am super sick of it all. My Pain doctor has been wonderful and he is the one who actually diagnosed me with Fibromyalgia 10 months after my car accident and he has helped me. Find a doctor who is willing to work with you. Sorry mine was kind of a vent too tonight.
I had never heard of nucynta . Interesting? I don’t take muscle relaxers I have in the beginning and the only only accomplishment was sleepiness. My pain management facility doesn’t allow you to bring anyone back with you unfortunately so I am on my own. I know life as it once was is over that’s why when I can get a small burst to do some deep cleaning done which happens about every 2 months it is worth the agonizing pain I am in afterwards. I have an amazing husband who cooks, cleans, takes care of our children( does all of the things I should be doing)I do feel very blessed to have all I do.
Shila, I take time to vent on here randomly too. It is one thing that really feels good because you know the people that will read this understand what you are going through. I was in a similar situation as you-working, being a mom a wife, etc etc. I finally had to quit my job because I just couldn't do it all. Did my family starve? No. We might have had to cut back a little, but we have found a balance-even if that means I am out of balance. It is hard. I finally just got angry with my diagnosis and I have been officially diagnosed a year ago.
I don't think you need to worry about anyone here thinking negatively of you either. I was on here just the other day venting away. I just couldn't handle it anymore. It felt good to know that you can come here and find the support you need. Best wishes to you!
It’s ok we all need to vent . I am glad you have a good support system and a good dr. I really hope the injections help. I work with children so I can understand the demand that must be on you. Although I know there is a great reward. I believe mine was caused my giving birth to my son or my surgery that’s the only thing I can come up with. You will be in my thoughts and prayers:)
Good. My manfriend does all that also. When I have a “my” day, I do as much as I can on that day because I know I’m not getting out again for a long time. It is totally worth it though to see the world within 40 miles away from home!
Someone cleans once a month. It’s not enough but it will have to do.
I understand exactly what you are talking about with being frustrated with doctors. My last Rheumatologist told me he was not going to give me pain medicine on a Friday night when I told him I was having so much pain. He said I needed to see a pain management doctor. It took me three weeks to get an appointment. It’s basically patient abandonment. My pain doctor believes fibro exists. If your pain doc doesn’t, get a new doc because he’s no good to you. My pain doc did more in two visits to get my pain under control than all three of the Rheumatologists I’ve seen in two years. Don’t put up with bad doctors. They can be pompous, arrogant assholes all they want at home, but I’m not going to PAY them to do it to me. Demand better and ask around to others in your area and find the right doctor. I know it’s hard when you are at the end of your rope, in pain and exhausted but your family needs you and YOU ARE WORTH IT. Don’t let any doctor tell you what you know isn’t true. Take care of yourself please and take some time off if you can to get your symptoms under control. Feel free to vent any time.
So sorry that you have not yet found 'your Doctor'! You know, the one who has a much better understanding of a highly complex condition that is robbing so many of their lives, the one who looks at every possibility to find the cause of the condition and works tirelessly to this end. Who does blood tests and physical exams for such things as injury, autoimmune, Lyme, neurological, endocrine, diseases or disturbances, imbalances...
I'm not a medical professional, but I have been around the boards long enough to have a few theories of my own, and simply put, I think that Fibromyalgia is the 'over-doers disease', I really cannot tell you of too many here that were not once dynamos, that could work at least 15 hours a day, doing 15 things at once, directing at least 15 other people to perform 15 more tasks...
I hear you, loud and clear! I hear what you are telling your Doctors, and I also hear what your body is trying to tell you, have you heard it yet?
I just don't know of anyone who can keep going at the pace we once kept who has Fibromyalgia, I understand that you have a family, and a career, but please be good to yourself, make your life as simplistic and easy as you can, this condition demands it. Stress just perpetuates this. The harder you push yourself, the harder it is going to push back!
I say this in the most kind and caring way! My admiration of you is profound, I hope you can find the right Doctor who will do his/her very best to help you all they can, but please be kind to yourself!
Wishing you well,
I am sorry you are having to deal with this. We rely on the medical profession to help us yet it is always such a hit and miss affair. My neurologist became really rude and dismissive when he found out I was being treated for depression. He said depression was the cause of my problems. I developed depression after the fibromyalgia's constant pain, brain fog and fatigue robbed me of a job I loved..
Sorry, went off on my own rant there, but I do understand how you feel.
Please find another doctor who will treat your fibro.
I go to a free clinic and had to see diff doctors.
The last one got me on Lyrica.I was already on celebrex and paroxetine.Nothing will take away all of your symptoms.Stress and working will make it worse.
Any chance you can work from home?
Because I cannot work full time I had to move into a low income highrise.
Keep trying because you deserve to get the help you need.But you need to change your life style.