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I'm going to a rheumatologist for the first time on Tuesday. What can I expect from this hour long consultation? I've heard that lyrica and savella are both FDA approved to help fibro pain. Should I ask to be put on one of those?

I'm excited about starting treatment since I was diagnosed 2 years ago but since then was pregnant and had a baby last year and focused on her. Now that I'm past the postpartum stage, I'm ready to get this under control.

Any suggestions for a first time rheumy appt… read more

January 27, 2016 (edited)
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Answer Summary

Members shared diverse experiences about preparing for a first rheumatology appointment for fibromyalgia, with the overwhelming consensus... Read more

Members shared diverse experiences about preparing for a first rheumatology appointment for fibromyalgia, with the overwhelming consensus being that medication management is highly individual and requires trial and error to find what works best. Several members described their personal journeys with FDA-approved medications like Lyrica, Savella, and Cymbalta, noting that while some found relief, others experienced difficult side effects including weight gain, hot flashes, liver concerns, and severe withdrawal symptoms, leading many to explore alternatives like gabapentin, tramadol, TENS units, and supplements such as magnesium, B12, and D3. A recurring theme was the importance of going into the appointment with an open mind, asking doctors if they would take the medications themselves, researching long-term effects, and remembering that medication is only part of fibromyalgia management alongside heat therapy, gentle stretching, pacing activities, and maintaining a positive attitude.

A MyFibroTeam Member

I personally will not take any of the current drugs such as Lyrica and Cymbalts or drugs like them. After researching them and seeing/reading what the long term side effects are on various body organs, it's not worth the possible relief. Just because a drug is FDA approved doesn't mean it's good for you. My husband just found that out after taking a well known diabetes drug for years. It was discovered during routine lab work that his liver and spleen are damaged and it's entirely possible he will be on a liver transplant list in the next year as well as having his spleen removed. This has caused me to be even more proactive in researching the drugs that are prescribed. My rule now is to ask my doctor and pharmacist if they would take these drugs or would they prescribe them for a family member, the response I get helps in determining which drugs I take.

January 29, 2016
A MyFibroTeam Member

I've tried several. Cymbalta, lyrics, savellla, gabapentin, Celexa, gralise. Those were all to treat the fibro. Pain meds tried were vicodin, tramadol, morphine, dilaudid & norco. I'm currently taking norco but being that I've been in extreme pain for almost 4 weeks now I'm gonna request a change up in pain meds. I'm no longer taking any medication for fibro since only a couple helped for 2 months the most. Others caused weight gain. So now I'm seeing a pain management Dr instead of rheumatologist. Everyone responds to medication differently but those are all the types I've tried, I hope they are able to help you with whichever types they put you on. *hugs*

January 28, 2016
A MyFibroTeam Member

@A MyFibroTeam Member
yep, I was looking into the tens electro therapy units that they use in certain dr offices.
On amazon here are a lot of different models and brands ranging from 30 - 500 dollars. So I decided to go to walmart and buy the $40 dollar Omron electro therapy pain relief. It runs on 2 triple A batteries.
This unit is a drug free pain reliever.
A hand held unit designed to be able to be portable meaning it can be held or put in a pocket and wear on the go, or sit and relax.
It comes with 2 sticky pads that you stick on your skin and snap on the wire .
The unit is simple to use, by pressing the area you stuck the pads on and then you decide the amount of electrical " zapping " you need.
It sounds way worse than it is, this unit you can only use in one are at a time ( example - knee, upper back, middle of back, lower back, hip, shoulder, arms, legs etcetera )Once you turn the unit on it starts right away and lasts 15 min at a time altho you can turn it off anytime you want.
At first ( the first time ) i used it and I jumped when it zapped me but I left it on because that was just the initial feel, as I left it one I noticed the tapping feel and the a pulsing push feel. Somewhere during it , It starts first like it hurts and then you forget about it, and when it stops I wonder where the pain went . I do not feel the pain in that area.
I feel it everywhere else I didn't use it. So I use it only on really sore or painful areas .And relieving some pain makes me able to deal with the other areas, still med free.
For me when I used it on my middle of the back - so far it has stayed pain free 48 hrs
I used it for hip - so far it has been 24 hrs pain free
I used it for RSL - so far no rsl the next night, altho the leg I didn't use it - that leg is starting with rsl already so I am using it tonight on that leg and hip.

January 30, 2016
A MyFibroTeam Member

I personally did not take lyrica or cymbalta just because they had horrible side effects and fibro is enough for me to deal with.
I just had tramadol filled for pain and I do a omron electrotherapy unit for pain spots. this was a cheaper model than on line and it is wonderful. example: RSL both legs. I used it on one leg and 15 min later no pain for 24/48 hours. the other leg i died with the rsl pain

January 30, 2016
A MyFibroTeam Member

Gabapentin is my first medication since diagnosis (although I take this along with naproxen, codeine and paracetamol). I was told to trial it and see how it goes, it's been approx. 3 weeks and I'm not sure what I should be expecting or if it's working for me yet. I have another hospital appointment next week and It will be interesting to see what they say or recommend. My appointment is Wednesday, please let me know how you get on. It'll be interesting to see how they both compare xx

January 28, 2016

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St. Charles, MO