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Old 10-13-2005, 08:54 AM   #1
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Fibromyalgia post hysterectomy and ovaries removed - A Link?

Hi, I am new to this particular board and would like to hear from other women who developed fibromyalgia after undergoing a hysterectomy, particularly having their ovaries removed? I had the hyst. two years ago, with a oophorectomy and am on Vivelle Dot estrogen patch. Since this past March I have daily horrible joint and muscle pain in every part of my body, low back pain, headache, extreme fatigue, irritable bowel symptoms, and flu-like symptoms. To top it off I have LPR, which is acid reflux. I am in extreme pain most of the time, and I'm beginning to think this is fibromyalgia.

I had to quit my full time job end of June and will be starting a per diem job in a few weeks because of this. My poor husband, he's trying to understand but I know it's tough on him because I don't look sick. I have been to my internist, a rheumatologist, OB/GYN, ENT and all my blood work, scans, etc. are normal. I even saw a psychiatrist and was put on Cymbalta (antidepressant) which didn't work that great and I went off of it. I don't like to take alot of meds. Should I see an infectious disease doc and or pain specialist? I'm only 49 and am used to being healthy and active but the tides have turned and I'm scared and confused as to what this is. I'm an RN and have done alot of research, asked questions, etc. but I feel like I'm getting nowhere. Is anyone going through the same experience? How are you managing the fibro? Thanks for letting me vent.

Renee

 
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Old 10-13-2005, 09:17 AM   #2
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Re: Fibromyalgia post hysterectomy and ovaries removed - A Link?

Hi Renee,

Just want to welcome you to the board. I have no answers for you, I never had a hysterectomy but one of our group I am sure can help you out.I have read where any type of trauma to our bodies can cause Fm to rear its ugly head.

Hugs, Linda
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Fibromyalgia
Myofascal pain syndrome
Costochondritis
Arthritis, cervical and thorastic

 
Old 10-13-2005, 10:10 AM   #3
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Re: Fibromyalgia post hysterectomy and ovaries removed - A Link?

First suncat welcome to our board. I had my uterus removed 33yrs ago. I can't say it was the cause of any of my problems since I have had symptoms (but not severe) most of my adult life. My symptoms did not become severe until about 5yrs ago and I was diagnosed 2yrs ago.

Being an RN I'm sure you get copies of your lab work, but be sure your thyroid count is between 1 and 3, it certainly helped me to get that in working order before I could get on with feeling better.

 
Old 10-13-2005, 10:23 AM   #4
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Re: Fibromyalgia post hysterectomy and ovaries removed - A Link?

Suncat, I had a hysterectomy 10 years ago. It was the beginning of my problems looking back now. I didn't have my ovaries taken out thou and i'm not on hormones. I have PLD and migraines and the hormones bring on severe migraines and with the PLD and as with PBD, the cysts increase and enlarge with added hormones. So i'm stuck with real low hormones and a mess with this fibro. I'm 47 years old and was dx with fibro last year. After the hysterectomy I had horrid pelvic pain for over a year. Thought it was the bladder repair, but still have it.I have many fibro sypmtoms. Hopefully i don't forget one....low back pain, arm & shoulder pain, neck & head pains, actually where doesn't it not hurt...My leggs give me alot of problems and pain. I get weakness in the arms and leggs. muscle spasms, twitches, eye pain, chest pain, I could go on...I have sensities to meds and smells, so i've been through a few meds. I use to take prozac, but it made some of my symptoms worse so now i use only baclofen, vicoden, nueroton and my blood pressure meds. Your sysmptoms sure sound like fibro. I fought against my dx. too many of my symptoms were much like ms. My wise doctor corrected me and now i'm glad i listened to him. I've always been a active person and i've slowed down over the past couple years. I miss my energy and being real active. I pay a price now when i do things that were totally normal before. Just cleaning the house gets painfull and shopping....I get too sore and painfull the next few days. My doctor told me to use it or lose it, the muscles. So i know i have to push through the pain. I find that half a baclofen and half a vicodin work well for me with the muscle pain. I know some need stronger, but i don't allow myself extra . Some days i wish i could just sleep all day through the pain, that would be nice if i could sleep through the night first...my doctor gave me trazadone, which i feel like a drunk the next day so it's on the desperate basis....I hope i've been some help. I would love to take hormones, it's like taking valuim for me.I was on the clamaria patch for a year, but ended up with a 10 day migraine. so i had no choice to stop and stop my progestrone cream...what a bum....good luck hon...brangram

 
Old 10-13-2005, 03:33 PM   #5
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Re: Fibromyalgia post hysterectomy and ovaries removed - A Link?

Welcome suncat. You will find the best people on this site. I love them all and they really help or just listen when you need it. I never had a hyster... but I did have my tubes tied and ever since then I have the worst cramps in the world. It makes my fibro on regular days seem like nothing. I get cramps running down my legs in my lower back and severe headaches. I have to lay on a heating pad and cry for the first 3 days of my period. I can honestly say that I have pains in my body or a headache and fatigue every single day and when the monthly WITCH comes around I just cry.
Glad you came, keep writing
Avrod

 
Old 10-13-2005, 06:49 PM   #6
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Re: Fibromyalgia post hysterectomy and ovaries removed - A Link?

Hi Suncat, welcome to the board! I had a hysterectomy with both of my ovaries removed last year (TAH/BSO) and I have to say that since then, I have been extremely fatigued and in pain. I have my first appt. with the rheumatologist on Tuesday, so I will hopefully find out then what is going on. I had my TAH/BSO due to endometriosis and was on lupron treatments and a bunch of other hormones to treat the disease. I also had to have four laparoscopies prior to my TAH/BSO to treat my endometriosis, so my body has been through a lot. My internist finally referred me to the specialist after checking me for arthritis, taking me off of my cholesterol medicines and caffeine, but I am still experiencing achiness and fatigue. I was put on FemHRT for the past year, but am now on Vivelle.dot too. I hope my information has helped and I will let you know what the specialist says on Tuesday. Take care and keep in touch! Also, don't give up! Be persistent until you find an answer! Best of luck to you!!

 
Old 10-13-2005, 09:58 PM   #7
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Re: Fibromyalgia post hysterectomy and ovaries removed - A Link?

Hi Suncat!

I also had a radical hysterectomy in 2002 and had my tubes tied in 1998. I was dx'd with FM about 2 years ago but was having symptoms before then. My problem, like many others here, is that I really don't know exactly when all this started. Sometimes I believe I have had FM most of my life, but I CAN tell you that my serious symptoms began in 2002 after my hysterectomy.

I hate meds too, but when you are desparate, you'll do almost anything to try and get rid of the pain, fatigue, confusion, etc. My intention all along was to take as few meds as possible. However, about 3 months ago, my pain, fatigue, weakness and brain fog became so intense that I had to let me doc prescribe Oxy ER, Oxy IR for breakthru pain, Rittalin in an effort to gain some energy (Provigil stopped working), Cymbalta because 1) I have a history of recurrent depression and 2) there has been some research indicating that Cymbalta somewhat helps with pain (don't think that's true in my case), Trazadone for sleep (just increased dose to 300mg). Also, I was just dx'd last Monday with severe sleep apnea and will be getting a CPAP machine in a couple of weeks as a result. Someone else on this thread said trazadone makes them feel hung over or something like that the next day. But for me, Trazadone does not have that effect and that's one of the reasons I like it. Also, my docs have tried many sleep aids and none of them worked for more than a week or so until Trazadone.

Anyway, this darn FM can be tough and I think most of us on here would agree that the best thing you can do for yourself is find yourself docs that you truly feel comfortable with and that you firmly believe you can trust, even if it means changing docs multiple times until you get the right one(s). Even then, we have found that what works for one or some of us doesn't necessarily mean it's going to work for you and vice versa. I think a lot of this is trial and error until you find the doc(s) and treatment(s) that works best for you.

Welcome to the boards and I wish you all the best!

Wishing everyone health, happiness, love & peace ... Robin

 
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