Fibro? I am a Nurse self-diagnosing.

[KT1]

I have suffered for years on and off with fibromyalgia symptoms. To start, I have depression and anxiety that I am currently managing with medication (Celexa and occasional use of Klonopin). Also, I have migraines that I am currently treating with Imatrex and Neurontin. I have not had a migraine since I have given birth to my son, 3 months ago. Which is amazing However, I have been taking neurontin to manage it regularly. I was tested for R.A years ago and was negative. I have researched Neurontin and it's off label use for anxiety, depression, and fibromyalgia. It has literally been my savior as far as helping my Fribromyalgia symptoms. Right now, it is only prescribed to me for migraines, so I will admit I have been taking more than prescribed due to my Fribo symptoms and it helps SO much. It is like a magic pill for me and allows me to function daily. I am SO thankful for it. I have NOT been diagnosed with Fibro due to just not going to the doctor about it yet. It makes me feel silly and crazy to go to the doctor and say "I dont feel good." "I hurt all over". I realize some doctors don't believe in it. I fear being perceived as a pain mediation seaker. My main symptoms are severe aching/burning in my legs and joint pain in my elbows, fatigue, and being completely uninterested in any pleasurable activity. I am decently active, (running, walking, yoga a few times a week), so I do have muscle soreness due to that. But I know the difference between normal exercise induced soreness vs what I am feeling Fribo-wise. I tried the "pressure point" evaluation at home years ago but not recently. I do not understand what I am supposed to feel when evaluating these pressure sites. Pain? Soreness? I already HURT, so how am I Supposed to tell? Any comments or advice is very much appreciated. Does this sound like Fibro?

 

[KT1]

Someone please help

 

[Mirador]

As far as the fibro tender points, which my rheumatologist checked on my first visit, to me the pain of pressing on them is similar to pressing on a very bad bruise. He also checked the middle of my shins, which isn't a tender point that's always indicated on the charts you can find online. That was the last place he pressed on. I nearly jumped out of my skin with pain. He apologized and said that this is often the spot that confirms his suspicions of a fibromyalgia dx. The outside of both of my hips and thighs are my second most tender spots - and despite any pain anywhere else I may be having - and it isn't always painful everywhere, it comes and goes - the shins and outside of my hips and thighs are always very tender to pressure. You're the nurse, not me, but you don't have to be a nurse to know that medicating over and above your prescription is a bad idea.

You're going to need validation of that dx from a doctor - preferably a rheumatologist, preferably one that sees a substantial number of FM patients. You can find that much out on the phone when you call for an appointment. My primary care doc sent me to the rheumy, suspecting RA was the cause of my aches and pains, and the rheumy ruled that out quickly with blood tests and hands on exam. I may have been one of the lucky ones - my FM was diagnosed at that first visit with the rheumatologist. Others say it takes many doctors to figure it out.

If you're running into any doctors who don't believe FM is legit, cross them off your list permanently. Every doctor worth his/her license these days knows it's a real condition. I don't think there are many left who say it's not. If you tell a rheumatologist "I hurt all over" and "I don't feel good," you're doing exactly what you need to do. That's their specialty. You have to get to the bottom of what's wrong, so first things first. Once you get a dx you'll feel one heck of a lot better knowing exactly what it is you're up against. And what your meds regimen should be for it. Good luck.

 

[KT1]

As far as the fibro tender points, which my rheumatologist checked on my first visit, to me the pain of pressing on them is similar to pressing on a very bad bruise. He also checked the middle of my shins, which isn't a tender point that's always indicated on the charts you can find online. That was the last place he pressed on. I nearly jumped out of my skin with pain. He apologized and said that this is often the spot that confirms his suspicions of a fibromyalgia dx. The outside of both of my hips and thighs are my second most tender spots - and despite any pain anywhere else I may be having - and it isn't always painful everywhere, it comes and goes - the shins and outside of my hips and thighs are always very tender to pressure. You're the nurse, not me, but you don't have to be a nurse to know that medicating over and above your prescription is a bad idea.

You're going to need validation of that dx from a doctor - preferably a rheumatologist, preferably one that sees a substantial number of FM patients. You can find that much out on the phone when you call for an appointment. My primary care doc sent me to the rheumy, suspecting RA was the cause of my aches and pains, and the rheumy ruled that out quickly with blood tests and hands on exam. I may have been one of the lucky ones - my FM was diagnosed at that first visit with the rheumatologist. Others say it takes many doctors to figure it out.

If you're running into any doctors who don't believe FM is legit, cross them off your list permanently. Every doctor worth his/her license these days knows it's a real condition. I don't think there are many left who say it's not. If you tell a rheumatologist "I hurt all over" and "I don't feel good," you're doing exactly what you need to do. That's their specialty. You have to get to the bottom of what's wrong, so first things first. Once you get a dx you'll feel one heck of a lot better knowing exactly what it is you're up against. And what your meds regimen should be for it. Good luck.

Thank you so so much for your response!

 

[Geeena]

you are a nurse so you will get this I am really sure -, Its going to be exactly the same as any other condition that is ‘invisible’.

with fibromyalgia you will need a referral to a hospital team
tests and other issues ruled out

if you are having problems with being undermedicated bring these to your gp’s attention.

re your pain might mean referrals to pain management clinics -and other good stuff in the uk.

you said you’re worried about being seen as medication seeking ... thats not a good reason to avoid medical help.

Wishing you all the best - you’re dedicating your life to helping others - so please do the same for you fearlessly now x

 

[KT1]

you are a nurse so you will get this I am really sure -, Its going to be exactly the same as any other condition that is ‘invisible’.

with fibromyalgia you will need a referral to a hospital team
tests and other issues ruled out

if you are having problems with being undermedicated bring these to your gp’s attention.

re your pain might mean referrals to pain management clinics -and other good stuff in the uk.

you said you’re worried about being seen as medication seeking ... thats not a good reason to avoid medical help.

Wishing you all the best - you’re dedicating your life to helping others - so please do the same for you fearlessly now x

Thank you!! Yes I fear being pain med seeking because I see it a lot in my profession and docs are very cautious these days prescribing pain medication. I have written my doc about the pain and hoping she will up my dose of neurontin for the time being and refer me to a good Rheumatologist!

 

[sunkacola]

I agree with what Geena said above. Get over being afraid to be perceived wrong and find a doctor who will listen to you. A great number of us on this forum have gone through being belittled and ignored by doctors who didn't believe us, and while it is not something I would wish on anyone, we all lived through it. So just go to the doctor, if you don't like that one go to another, but have all the tests done properly, and please stop diagnosing or treating yourself at home because as a nurse you must know this is not the best approach. Gather your courage, and find out what is going on. It is always better to know the truth than to speculate, even if the truth is not what you would choose.

 

[KT1]

Update: my primary doc was able to fit me in today and we have starting ruling out things. She drew blood for RA and Lupus etc... x rayed my elbows and knees because those are hot spots for my joint pain. We will see what comes of that but she seemed very accepting of me and thinks it’s indeed Fibro. She is changing me from Celexa to Lexapro. Also upping my neurontin dose officially. Yay.
Does anyone have experience with Lexapro?

 

[KT1]

Oops not Lexapro!!! It’s Cymbalta!