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Living With Fibromyalgia - Online Support Group

New to this disease

Hi, I’ve been diagnosed with Fibro for a year now and struggling with work, home all I want to do is sleep the pain away my Dr has only given gabapentin and I’ve told him many times that it does not help me I am a mother to two vibrant girls ages 9 and 11 and it kills me not being able to do the things they love and they are so understanding but I wish I can do all the fun stuff they love. Thank you for letting me vent and welcome any advise new to this wonderful community

Hey Nicole,
Welcome to Ben’s Friends. Having had a bit of experience with Gabapentin I can tell you it didn’t work for me either. It seems to be one of those ‘fallback’ medications that the dr’s hand out when they really aren’t sure. My condition is not fibro related, but I was trialled on all sorts of meds, gabapentin being one of them and personally I felt worse on the damn things than without. I queried the dr on just how this med worked and his response was “Well, we’re not really sure how they work…” :shock: Seems its more a case of ‘…Well, here, try these…’ I felt absolutely :yuck: No thanks, I’d rather go without than be on them. Now for some they may well be the wonder drug, but I’m not one of them.

Merl from the Moderator Support Team

Thank you so much for support I am feeling the same way you do about it, I am new to this so I’m going to keep telling my dr I need help my daily life is struggling

Lasso, I’m so sorry to hear you’re still dealing with pain. I also second Merl, Gabapentin has become the “go-to” med for pain for no apparent reason as it doesn’t work on a majority of pain!

Gabapentin is an anti-seizure med (brand name Nuertontin). It alters the way your brain uses the electrical impulses that run your body and sends messages to your brain, including pain impulses in some cases. I repeat, In Some Cases.

Actually, it’s in very few cases that Gabapenin actually works on pain. First, it has to be nerve pain. Second, it has to be specific kind of nerve pain (it’s not understood what kind at this point).

I’m not a medical professional but I’ve been on Gabapentin for 4 years now and via my own experience and research it appears that Gabapentin works best on nerve pain caused by some sort of compression of the nerve. It also seems to work well on pain caused by nerves misfiring but the misfire needs to lean towards epileptic in nature, it’s official use is, after all, for seizure prevention. I would say stand your ground with your doctor, Gabapentin isn’t helping you so you need to be given something else.

Speaking of something else, if you go to the top right hand of the page you can type in search words next to the magnifying glass – there are some excellent older conversations about other ways to control pain that you might find helpful.

azurelle

Hi Lasso4. I totally empathise with your struggles with work and two kids. I am in a similar position, only been diagnosed a year but took 5 years to get diagnosed. I work 25-30 hours a week and have two girls aged 9 and 7. I am so tired from work, I can’t function at home and I’m so exhausted from looking after the kids I can’t function well at work either. I have to find my own little life hacks to try and keep myself in the game for both. I feel bad that I allow my kids too much time on their tablets each day but I need to have them entertained so I can have some rest in the busy day. I was put on Gabapentin years before the doctors knew it was fibro as it was initially thought I had spinal stenosis from my scoliosis. When a neurologist ruled this out he wanted to take me off it but I realised when I tried that it was actually doing some good. After diagnosis I was then put on tramadol after years of codeine but this only really helped when the Pain Clinic Doctor told me to take them in advance of the pain rather than as a reaction to it. I had previously been told to only take the painkillers when the pain got bad. I was told that if you take painkillers when your pain is 3/4/5 out of 10 then it can stop the pain building up to a 7/8/9 out of 10. If you only take it when the pain gets to 7/8/9/10 then the most relief you will get is a reduction in 2/3 points. This knowledge has really helped me this last year. Maybe try and get an appointment with a Pain Clinic in your area to review your medication?

Wow so similar to me I have 9 year old daughter and 11 year old daughter and I feel bad I let them on their electronics a lot also yes I’m trying to research drs in my area in CT thank u so much for your insight

Yes I definitely will put my foot down with the dr also researching drs in my area in CT thank you so much

The problem is with FMS the pain type is well defined, so I need to interject here

We know for example narcotics ( with one notable exception - mu inhibitor) makes FMS pain worse. FMS pain is not inflammatory so that eliminates NSAIDs. The anti seizure meds will help (if it is actually FMS pain) BUT there are a large number of them and dosage/titration is time consuming and tedious. A good multidisciplinary pain clinic is essential to success It is far more than finding a magic pill.

Low impact aerobic exercise 3 times a week because it increases brain production of serotonin is critical. (It also slows down the nerve firing.

Antidepressant medication (SNRIs in particular) also help return those brain chemicals return to normal.

I understand the stress of work and parenting BUT somehow someway you need to carve out some quiet time each day, whether a spouse neghboretc can watch the kids or you have to cut the budget somewhere to pay child-care, it essential. Women’s bodies are wired differently. Stress really messes with the brains chemical production. You might be able to kill two birds with one stone as many gymns offers child care or kid activities.

For reasons not understood Tramadol is moderator effective when used as Charto described BUT it needs to be managed by a pain management doctor. It’s now a schedule IV med.

It takes time to get to a better place and a lot of work but most patients get there. Good luck

TJ

This was very helpful thank you so much TJ

-Nicky

TJ - Apologies, didn’t make myself clear. The tramadol I take only works for me because I had a pain management plan tailor made for me by the doctors at the Pain Clinic. It is personalised for me, yes, but Lasso4 was asking what other people had tried. I explained what was working for me and that the most important thing was to get a referral to a pain clinic which I hope she does as the average GP isn’t knowledgeable enough to help.
In terms of the standard advice, personally, I find the recommended “gentle” exercise and resting not actually possible when I’m balancing work and kids. Prior to Fibro, I was swimming 100 lengths, taking 2 hour hot yoga classes and walking 5 miles a day. Fibro certainly didn’t come on because I was not active enough. I’ve never gave up - just had to do less and less until I’m struggling with 10 minutes of any exercise (which I still push myself to do). I also get exercise “hangovers” where I’m in so much pain for the next day or so. The painkillers help me get through this plus all the walking to school and sitting at a desk 8 hours a day - I wouldn’t be able to do this at all without them. Giving up work is not an option and neither is slowing down with the kids or housework - who will do all these things I need to do? I may revisit this once the kids are older and I’ve paid off the mortgage but for now I have to plough through and try not to break apart in the process.

I raised two girls , while dealing with fibro… its so important to find ways to help yourself also, because meds are not the only answer…

I like topical pain relievers, if there is a major area of pain…these can really help reduce the pain level…

We must stretch… and we usually need to learn to help our myofascial issues…

Never stop asking questions and researching alternatve fibro help.

A high quality d ribose m , will help energy levels

Heat helps

Learning to pace your work out can help

I read about a clinical study for fibromyalgia for dextromethorphan. I knew I could purchase it at the drug store, so I have started taking 200 mg gabapentin with 15 mg of dextromethorphan. I think it is helping my achy muscles. It is worth a try. See more information on the study at clinicaltrials . gov

Hi Lasso4. I wouldn’t take those pills darlin. They are not fit to consume. I been tried on those as well. They make you feel worse if anything. When I tried them I felt like a zombie. What terrible side effects. There as to be better medication out there for you. Just tell him no you can’t them,and what else can you give me without all the nasty side effects. Good luck. :x::x:

Update: June 2019 - I still am taking dextromethorphan. If I stop it, my joints are more achy. I have discussed it with my physician.

I really feel badly for all of you who are raising children and dealing with fibromyalgia. I’ suddenly so grateful I had my health for the years I raised my daughter and only in the past 10 years have I been struggling.

I only have Lyrica and I feel like it does squat. I was on antidepressents but recently was taken off them because they weren’t doing anything. My doctor didn’t replace them, just took me off them. But he gave me the sound advice (and added an eye-roll), saying “Just get on with your life”. Yep, THAT was helpful.

The only thing I really find that helps is to perform light stretching exercises every other day and not to let myself sit for hours, even though it’s what I desperately want to do. I make sure I get up every hour and do something (I’ll go up a flight of stairs or vacuum or sweep… something). The less I move, the worse it gets.

I also know a lot of people who say massage works, however I had a VERY bad experience where I went to a massage therapist, told him I had fibro, and by the time I left I couldn’t move my right side. For three days, I was in agony and unable to do anything. I never tried massage again.