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New to Fibromyalgia 28 year old male with chronic pain

Posted , 8 users are following.

i.gomez1287
i.gomez1287

Hey guys, I am newly diagnosed with Chronic Pain Syndrome aka fibromyalgia... I am in a lot of pain and after 3 months consisting of 5 MRIs, countless x rays, CT scans, colonoscopy/endoscopy, and having more blood drawn than Dracula's personal stash, a rheumatologist I was referred to diagnosed my mysterious illness. He wants to send me to a pain management clinic in Boston, and I'm a little nervous about medications. I want to resume my normal active lifestyle, and don't want to be hooked on drugs, but this pain some days and fatigue is unbearable. I could use some advise on what works for others so that I can have a reference point when I meet with these pain doctors. Any input helps! Thanks guys!

1 like, 12 replies

12 Replies

  • StephaniaWi
    StephaniaWi i.gomez1287

    Posted

    Ooph, well I am sorry to hear this. Everyone is really different and it can take a long time to figure out what works for you. For me, butrans patch 5mcg, gabapentin, and tramadol. Do they control my pain? Not really. Am I able to survive, yes. There are cons to them all. Butrans is phsyically dependent on. Gabapentin I hear is a nightmare to get off of. Tramadol just have to be careful with, take as little as possible. Other things that have helped me. Antiinflammatory diets can do wonders. Epsom salt baths and proper magnesium topicals galore. Acupuncture has done a lot for chronic fatigue but I know it is not affordable. I am lucky to have insurance that covers 20 visits with medical necessity. Chinese style acupuncture helped more than Korean style for me personally. I take high quality curcumin/tumeric supplements. I have tried many brands but unforutnatley it is really expensive, from amaz cost is around $40 a month, but pain is pain and I would give my last penny to be free of it. 

    If I was just diagnosed and could start all over, I would first try the antiinflammtory diets and natural things like gentle exercise, you can youtube up some fibro exercises. The tumeric and magnesium. See if that with JUST tramadol can get you through. A lot of people end up being allergic to nightshades and pain decreases quite a bit with elimination diets. I would try these things before going on something that is chemically addictive. I hate that if I forgot my meds on a trip or something I would go into withdrawal and end up in the ER. I pack a small amount in different places just in case something gets lost. It really stinks.

    Anyways, I hope you get a lot of advice. I feel like I have read every article, blog, support group comments, etc on the matter and this is the best I can tell you. You can find support groups on the facebook that are wonderful to read comments and get ideas. Take care and I hope you do not suffer.   

    • i.gomez1287
      i.gomez1287 StephaniaWi

      Posted

      Thank you so much for your reply, I am going to look at diet first and see where I can cut out some inflammatory foods. My insurance does cover acupuncture as well for a certain number of visits, so I'll definitely look into that (I didn't know there were different types)! My bf is a personal trainer, and he too suggested exercise, which is fine when I'm ok, but when the pain hits it's like being hit by a truck & I don't want to move. I really appreciate your advice on how you'd do it over again. I'll definitely try this first and see if it works. Luckily, the pain clinic does offer acupuncture, physical therapy, and other more holistic forms of recovery aside from just throwing pills at you. Thanks again, I appreciate the support!
  • heather60265
    heather60265 i.gomez1287

    Posted

    Hello. I am in the same vote. 3 months of mysterious illness, progressive pain. Going to see a rheumatologist on the 12th. Pain dr next on list. I'm nervous about drugs too. Also nervous how this pain affects my daily living. I can not even drive a car. May I ask what specific pain do you have?
    • i.gomez1287
      i.gomez1287 heather60265

      Posted

      Mostly pain everywhere, but not all at once... Same with tingling around my head and leg (mostly right side) Drs were afraid it could be MS or ALS, so I am in a way happier it ended up being fibromyalgia. I had everything else eliminated, and still have the pain... Which is how this disease is unfortunately diagnosed.
    • vicky89033
      vicky89033 i.gomez1287

      Posted

      Hi has anyone suggested or tested for lymes as your in US should be easier than in UK. tingling joint and muscle pain main symptoms and is misdiagnosed as fibro/chronic fatigue syndrome. if they tested you for MS they must have been looking at symilar symptoms to lymes. the Horowitz questionaire is on line worth having a look. good luck with getting pain relief that works for you
  • loxie
    loxie i.gomez1287

    Posted

    Hi I.gomez.  So sorry to hear you've been struck by this evil condition at such a young age.  I started with symptoms in my late 50's which is bad enough.  I haven't had the opportunity of attending a pain clinic yet - it seems to take years to get referrals and action here in the UK, but I hear many people state that the pain clinic is very helpful.  They don't only approach the problem with just meds, I believe they look at the problem more wholistically with diet, exercise, lifestyle, etc., all taken into consideration.  I so agree with you about just throwing drugs at it.  I have real issues with anything opiate based, I just get sick so they're useless.  Other less toxic drugs either don't have much effect or cause nasty side effects so arent worth it either.  I so sympathise about the pain and fatigue preventing 'normal' life.  I was healthy, active and a cheerful type before this hit, now I feel 100 yrs old, cant do the simplest things and the pain and exhaustion make me short tempered and irritable - which I hate most.  I really hope the pain clinic can find ways to relieve your symptoms, at least enough that you can get back to some sort of normal life for someone as young as yourself.  Good luck hon.
    • i.gomez1287
      i.gomez1287 loxie

      Posted

      Thanks so much for your reply, yes, I think I am allergic to opiates as well. When I had my wisdom teeth out the had to switch the drug they gave me becaus so got so sick from the oxy... Also diloded made my blood pressure plummet to the floor, and morphine just makes me sick constantly, so I totally agree with going the drug free route. Luckily I've learned that the pain clinic I'm visiting has a more holistic approach rather than first throwing drugs at you to keep moving... I'm looking into acupuncture & maybe physical therapy to start and working on diet changes (fingers crossed this all works). I'm sorry it's taking so long for you, but I'm glad we have sites like this where we can support each other! Thanks again for your insight it's definitely appreciated!! Take care!
    • trisha87499
      trisha87499 loxie

      Posted

      I attended pain clinic for 3 months and it was in my opinion a waste of time all they did was talk at you every Thursday for 3 hours at a time. You don't get to speak to doctors, it was physio cbt, and mindfulness. There were 12 of us in the group and we all thought the same, it's sad to say but one of our group ended up taking his own life because he could get no help or relief and he was only 42
  • kaz_40
    kaz_40 i.gomez1287

    Posted

    Hi i.gomez1287 I am unable to take tablets for fibro as Im allergic to opoids. Their are alot of side affects with these drugs. With fibro its trial error what works for you and what doesnt. fibro affects us all differently, so what works for one may not for another. some people take herbal remedies and find that works for them. Theirs morphine lyrica gabistan to name but a few. Also with fibro we have to learn to pace ourselves, as if we dont fibro fights back we end up in more pain and in some cases bed ridden.pain management clinic should advise you on what their is and side affects. take care 
    • i.gomez1287
      i.gomez1287 kaz_40

      Posted

      Thanks for your reply! I am going to try changing my diet and working on taking a more holistic approach to fighting this. I don't want to become addicted to pain pills, so I'll try everything else I can first! This clinic luckily, offers many different approaches to fighting this chronic pain, so we'll see what works for me. Thanks again for your response and support! Take care as well!!
  • trisha87499
    trisha87499 i.gomez1287

    Posted

    I'm afraid if you are in that much pain, pain relief will be an option for you, you will need to try several medications and hopefully you will find something that works, if it's fibromyalgia then you are going to need some form of relief , even trying herbal and meditation, it can take a while but you will get there. Good luck, we are all in the same position as you so talk to us good luck
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