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I was told I have fibromyalga but I'm worried something els could be going on. Any ideas?

Posted , 10 users are following.

rebecca01586
rebecca01586

It started out as neck pain after I had my first child. It went away on it's own then after I had my son it came back a couple weeks later. It started out as an unbearable neck pain. I went to different doctors they kept giving me muscle relaxers and stuff for inflammation. None of that helped. I needed something for the pain. One doctor tried some Hydrocodone that didn't work either finally one tried Oxycodone and that helped numb the pain but doctors don't like giving that out so I had to go to a pain clinic and the pain clinic wouldn't give me the only thing that had helped so I found another as of now I get a monthly prescription of that and I see the OT at my pain clinic also get massage it's helpful but it's not enough. I'm getting a high tolerance to the pain killers and I want to get off them wen I run out I have nothing and feel terrible either way. A couple of different doctors tell me I have fibromyalga but I am concerned it could be something els or something in addition to that.

Here are my symptoms: I have pain in my entire body now. I always get knots in my neck, back, shoulders, it feels like I have some in my arms too and my legs. I have carpol tunnel in both wrists. My wrists are very loose also and make cracking sounds. (Also these cracking sounds are bad in my shoulders too and other parts of my body). I get terrible migraines all throughout every month. I get really bad hotflashes every day all throughout the day. I have no energy or very limited I feel exhausted for no reason and I'm tired all the time feel like I need caffeine just to live. With all this weakness pain and lack of energy it's so hard for me to do anything in life my marriage is failing I'm failing as a parent because of this sad if anyone has any ideas of what I might have or any treatment that might reduce these symptoms please please any ideas welcome. Thank you.

4 likes, 42 replies

42 Replies

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  • Becka35
    Becka35 rebecca01586

    Posted

    Do you have any stomach issues?
    • rebecca01586
      rebecca01586 Becka35

      Posted

      I do have cramping feelings in my stomach like all the time
    • Becka35
      Becka35 rebecca01586

      Posted

      How about your chest or sternum area any pain there and are your cramps in the area below your sternum and above your belly button
    • Becka35
      Becka35 rebecca01586

      Posted

      I have a lot  of these same symptoms but I get random stomach pains above my belly button. I was told I have fibro as well 
    • Becka35
      Becka35 rebecca01586

      Posted

      I bought a hot tub and use it regularly and also do a lot of icing and stretching swimming helps my muscle soreness. Take hydrocone when pain is very bad. Other wise I just deal and try to take care of my family with this monster of a disease.
    • rebecca01586
      rebecca01586 Becka35

      Posted

      I see rolleyes I'm sorry for your pain. I really wish there was some cure for this. It ruins life.
  • marie04645
    marie04645 rebecca01586

    Posted

    I can't say that I know what is wrong with you but I do know that stress can really do a number on our nervous systems.  I too have neck issues due to degenerative disc disease.  Are your hot flashes due to "change of life"?

    If so maybe that is why you feel so drained.  That together with marriage problems would be exhausting.  I hope you get to feel better & find a doctor that is a good listener.

    • rebecca01586
      rebecca01586 marie04645

      Posted

      Thank you. I'm sure stress is making it worse and I'm only 21, I've had this problem about 2 years.
  • nikkiscorpio
    nikkiscorpio rebecca01586

    Posted

    It's so hard to tell if you have something other than fibromyalgia because there are SO many different symptoms. And have you ever had an MRI of your neck AND spine? My mom has 3 herniated discs in her neck and degenrative disc disease and she has a lot of the neck and shoulder related symptoms you mentioned. I find that neurontin/gabapentin helps with the numbness and weakness. I take ultram/tramadol for pain. They act as a narcotic but aren't actually one. Narcotics don't help me at all. Have you tried Lyrica? It makes you gain weight and you swell up a bit, but it helps with muscle pain and gives you energy and puts you in a better mindset. It even made me be able to fall sleep without needing an ambien. I had to come off the lyrica because I couldn't afford the weight gain. I take savella now and it helps with your energy level and mood and it helps with the pain in your arms, hands, legs and feet. I haven't found anything to help with the ibs that comes with it though. I hope I've given you some helpful info. I know it's hard, but keep trying to find whatever works for you!
    • rebecca01586
      rebecca01586 nikkiscorpio

      Posted

      Yes I did have an mri they said all they found was a couple bulging disk in my neck. That's what I thought my pain and problems were was just that but the pain spread and now it's in my whole body and much worse. I don't think I would like something that makes me gain weight, as I'm trying to lose some still but thank you for all of your options I will look into some and keep trying.
  • loxie
    loxie rebecca01586

    Posted

    Hi Rebecca, firstly I'm so sorry to hear you are in such discomfort, I really sympathise.  As the onset of your pain issues seems to have been connected to childbirth, have your doctors investigated your hormone levels?  It's becoming more and more apparent that pain syndrome problems (whether or not it's given the name fibromyalgia) can be hormone related.  Taking heavy duty painkillers long term may cause more problems than they solve.  Please be assertive with your GP and demand extensive endocrinology tests - there have been real success stories of women with horrendous pain syndrome issues finding fantastict relief once hormone levels are adjusted and regularised.  Not just estrogen but many complex hormone imbalances.  Often women find they have no issues whilst pregnant but thereafter it returns with a vengeance - fairly obviously hormone related.  Secondly, you are NOT failing at anything, you are in pain and need help.  Do kick the caffeine habit, it's clinically proven to increase pain issues, sugar also.  Avoid pain meds with caffeine added too.  Try a bath with magnesium added (epsom salts) does wonders for aching limbs.  Hope you find a way forward soon. xxxx gentle hug.
    • rebecca01586
      rebecca01586 loxie

      Posted

      Thanks so much for the support. The doctors really haven't explored the hormone thing at all. They look at me like I'm crazy and a drug seeker or something, when really all I want is pain relief. I haven't even had a doctor tell me what I have until about a month about or so and I'm the one who suggested that I might have it and she said my symptoms did fit and tried to get me on Cymbalta. She had me try zoloft in the past and it was horrible so I was a lil iffy. The Cymbalta made me feel bad as well. Antidepressants just seem to make me have way less energy and way more hot flashes so I'm worse than wen I started.
  • kaz_40
    kaz_40 rebecca01586

    Posted

    Hi rebecca01586  Before I was diagnosed last year, I had many many tests done to rule out other conditions. Because tests kept coming back ok my gp refered me to see a rheumatologist, after yet more tests to rule out rheumatoid arthritus, the rheumatologist diagnosed fibro. and refered me back to gp for pain meds. I am unfortunatly unable to take anything for pain as alergic to opoids. everything is trial and error in finding what works for you and what doesnt. I use wheat bags and hot water bottles for pain relief. dr can refer you to pain clinic cbt therapy some areas do free acupuncture for so many weeks, and some areas offer hydrotherapy at your local hospital hospital for so many weeks.I would go back to your gp write everything down what you want to say so you dont forget anything, get all the help support you can aids to help you. see if your area has a local support group.It does sound to me like it is fibro. Your gp can advise you and also get some one to assess you for any aids you need. Where fibro is concerned it differs from person to person so what works for 1 person may not for another.Its finding what works for you. You need ro have a good chat your gp. take care x 
    • fibrogirlinmain
      fibrogirlinmain kaz_40

      Posted

      You are exactly right kaz 40. Being very assertive with your GP is a good start. I finally got fed up enough after 16 years of this hell. When I was originally diagnosed all they did was the 11 point test and that was it. And since there are supposedly no tests yet to say yes you have it, what you need to do is get tested for everything that would have the same group of symptoms or even some of them since more than one thing could be going on. At my appt. yesterday I went prepared with stuff written down that I had found out by researching reliable web sites like the Mayo Clinic etc. and I pretty much demanded to have some tests to rule out something else. I also talked about my med and if there were other things I could try or if I needed a higher dose. I told him about what I had found while researching because I think most GPS really don't bother with that kind of thing. I got some results, tests ordered, meds changed or increased. The only problem I am having is getting him to send me to specialists on this which are neurologists and rhuematologists. The latter are very hard to get to see. There are only 6 in my area and they don't take the state insurance which I am on. But I will not give up. Have a revisit in a month and going to work more on that part depending on what the tests show. It's just doesn't make sense to me that people all over the world seem to be getting this condition and more and more people every day. There has to be something causing it and there must be something that would stop it. I do not want to spend the next 20 or 30 yrs I have left feeling like I want to just die and get it over with. I would give my life to have just one day with no pain for 24 hrs.
    • kaz_40
      kaz_40 fibrogirlinmain

      Posted

      It took 10 years before I got a diagnoses, in the uk its normally a rheummatologist that diagnoses fibro. I saw every specialist you can think of tests galore. Before my gp sent me to see a rheumatologist, he then did the pressure point test I got 18/18. He then sent me for a bone scan and yet more blood testsrolleyes. when results came back bloods showed low vitamin d. Everything else came back fine tests were to rule out rheumatoid arthritus. He said to me you have fibromyalgia no explination of it. He said Im discharging you back to your gp for pain rrelief that was it.Fibro has been around for many many many years. you would think by now that fibro would be more out their their would be a bettter understanding of it. and health proffessionals would be better educated in it. Fibro should be on the same level and footing as ms and me. NO one seems to care is what Ive found with specialists gps also. I hope you are able to see some one that knows understands fibro your dr should send you to see a rheummy or neurologist. I wouldnt give in I would insist that he refers you to one and dont back down on it. take care
    • rebecca01586
      rebecca01586 kaz_40

      Posted

      Okay I will do that. Thanks for the advice and yes I do have a lot of the symptoms of fibro. I'm going to go see a ruemotologist next month. Do you think it's even worth it though?
    • kaz_40
      kaz_40 rebecca01586

      Posted

      Yes you must definitly go to see the rheumatologist, it is they who diagnose fibromyalgia and are suppose to know all about. it Write all your symptoms down and also how you are feeling.Write down any questions you might like to ask. Some gps have little knowledge on fibro or understanding of it. where as a rheumatologist does. let us know how your appointment goes. take care gentle hug x
    • rebecca01586
      rebecca01586 fibrogirlinmain

      Posted

      I'm with you there. I'm sick of being in pain and relying on pain killers to take away the pain for about a week a month. I want to know wats causing it and what can cure it. If that's all I even have.
    • rebecca01586
      rebecca01586 kaz_40

      Posted

      Okay thanks will do. My appt isn't til September 17th unfortunately...I really wish I could get in sooner but that will have to do.
    • kaz_40
      kaz_40 rebecca01586

      Posted

      we are in sept next week appointment will soon come round hun, dont loose heart wount be long now take care gentle hug 
    • Flowerlady
      Flowerlady rebecca01586

      Posted

      Hello Rebecca1586

      I agree with Kaz, you must go to your appointment with the Reumatologist they are the people who know all about Fibromyalgia.Its the 1st next week, so not that long to wait..Good luck, hope all goes well for you..smile

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