1. Community
  2. Bones, joints and muscles
  3. Fibromyalgia Syndrome

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

Prev Next
  • charlotte1824
    charlotte1824 rebecca01586

    Posted

    I'm sorry your having a tough time, mine also came on shortly after having my son. Mine started with left side of face and neck pain and has slowly spread throughout most of my body. I however don't think I don't sleep and I don't have to many stomach issues, mine flares worse shortly before my period or when the weather seems to be overcast which is pretty much 24/7 in UK!!

    There are many medications that can be prescribed. It's just a case of whether you can tolerate them and which one helps you.

    Can I suggest you stop the caffeine, caffeine is a neuro stimulant and leaves your muscles tense anyway. It's not helpful in a sensitive body. I drink decaf but am pretty sure I need to stop this also.

    I concur that it could be hormones as my mum suffered after I was born and I have now my son is born, especially if got having hot flashes. I'm 6yrs down the line now and my regret is not doing excercise as I've been in to much pain and didn't want to aggravate it. If I could go back I would have tried to excercise to keep my body strong and hopefully ward of the 2 dodgy knees I've got and other ailments. Have they tested your thyroid? A lot can happen to that after pregnancy.

    Your GP should be able to do basic inflammatory tests to show if u have elevated inflammatory markers but you should ask for a rheumy referral.

    good luck

    • loxie
      loxie charlotte1824

      Posted

      I've been having another hunt online for more help and stumbled across NHS choices website.  There wasn't much detailed info about fibro - all the usual general (basically, we dont know) stuff but it did give some info on possible 'triggers', one of which was childbirth.  I'm still 100% convinced that mine is endocrine related.  Hormones play such a big part in our wellbeing and an imbalance in cortisol (adrenal), thyroid function, oestrogen, progesterone, testosterone, etc., (all inter-connected) can bring on a whole range of ill health and pain.  Why the heck won't doctors focus on this element?  I have a tactic now for when a doctor starts to say words like 'age related...' I hold up my hand palm towards them and don't take it down til they shut up, then I politely say something like - if it's only my 'age' why are the young affected by this? Let's move on and find the REAL cause and not hide behind ageism please.
    • kaz_40
      kaz_40 loxie

      Posted

      well done you loxie for standing no nonsense when drs start on about age related. age related? what bull a friend of mine her nephew had it from the age of 7 hes now 45 how can drs say age related.honestlyrolleyes idiots some of them xxxx 
    • rebecca01586
      rebecca01586 charlotte1824

      Posted

      Yes they checked my thyroid and it was fine. Your probly right about the exercise and caffeine. I feel much better if I can exercise but lately I just can't push myself to do it rolleyes I guess I'm starting to get depressed from this.
    • charlotte1824
      charlotte1824 loxie

      Posted

      I was 25 when this happened so age has nothing to do with it. Drs are pretty much useless. Now and again u get a decent one but they are far and few between. There is so many people with this condition now I don't know why research isn't a top priority. Loads of people are applying or are already on sick pay and we have to see Drs way too much only be sent to another Dr not to mention the medicine costs. Why aren't they thinking that even if they don't care about us and our lives they care about money, when we are costing them (nhs and government) money why aren't they hunting for answers. I hear about studies daily but they very rarely site fibromyalgia. Sorry for rant but just annoys me that they dont have an answer. They know how autoimmune disease work, they can't fix them but the can somewhat effectively treat them and they have an understanding of why they come about but they can't even classify fibro as anything, they say it's a sensitivity to pain but I don't think so, u can stamp on my toe and it hurts the same as it would with anyone, then they say it's a brain issue, then a chemical imbalance, then some rare study said it's the nerves and blood vessels in the hands and feet. I mean at least be able to tell us why, u can't cure it but this is the mechanism that's causing the problems and here are some drugs that actually target that problem.
    • diagnosisisalie
      diagnosisisalie loxie

      Posted

      You go Girl!! WHere have you been when I have been having to deal with the doctors? I got to the point that I let my gp go . I see the new gp on Monday. I have 6 specialist, I plan on getting rid of 3 of them. How I see it they should probably listen to me some since I am the paitent.
    • diagnosisisalie
      diagnosisisalie

      Posted

      Everyone thinks the nast FIbro started for me sometime before my surgery as I fought with anemia for a year before surgery.
  • nikkiscorpio
    nikkiscorpio rebecca01586

    Posted

    You definitely need to see a rheumatologist! Everyone is right in saying that they're the best diagnostic. And if you find out that you do have fibro, I would recommend finding a pain management center or clinic. They're the only people who have ever helped me. I'm only 22 and have been dealing with this for a little over 2 years and it's hard to get people to take you seriously. And my condition started after a pregnancy loss and my doctors think the hormone level change and trauma is what triggered my symptoms.
    • rebecca01586
      rebecca01586 nikkiscorpio

      Posted

      I have been seeing a pain clinic for about a year and they are food for the pain meds and the physical therapy and massage. Those all help but it's not enough. It's like they have to keep putting me back together and I fall apart faster than I can get there. That's no way to live life. I wish there is something I could do at home..I need my own pt and massage person lol
    • diagnosisisalie
      diagnosisisalie nikkiscorpio

      Posted

      I have 1 pain Clinic near me, my hubby called cost 250 cash, no insurance. SO we had the fight, me saying no way it cost too much him ignoring me. He spent 20.00 to get my chart from the RA to take to the Pain Clinic, to look at to decide if they would take me. The doctor says he would do the same thing the RA is doing, Tramadol, Ambien, Cymbalta, and LYRICA> ANy one undestand that not all meds work for all peopl and just by increasing it doesn't always make the problem go away
  • diagnosisisalie
    diagnosisisalie rebecca01586

    Posted

    From what I just read you have alot of the similar symptonms as I do. They say that Fibro has a way to sneak into your life around the time of an event be a tragedy or a birth , or surgery. I think that it is odd that I too have carpal tunnel in my right hand, although both hands have the symptoms. The nurologist is the one who directed me to the RA , for the FIbro diagnosis. There are several things that have the same symptoms, and if you think that it could be something else demand for test , Fibro is rally about the only thing with out a blood test, they have one it is just new and many don't use it. Start your own advocacy . I Do Not Like The Idea Of Not Being The True Me, I think this Fibro stuff robs me and my family of the energetic person that I am. I am doing accupuncture, it helps some, more with each vist. I never did it until I was diagnosed with Fibro. I am sorry , butI think you may need to walk away from that way of controlling your pain. I am seeking a different way to help with my pain but I will NOT do anything that I become attached to , this is my life not the pill's life. I crack pop aND Mke noises like a Chinese noise maker. It is funny to be waiting in the doctor's office and I crack an ankle , my neck , etc and everyone in the waiting room hears it. I feel for you on the energy . I have no answers yet, but I can say that I am investingating thyroid and fibro and the guafessian protocol , and the LTN. Best of Luck
    • rebecca01586
      rebecca01586 diagnosisisalie

      Posted

      Thanks. I so find that stretching or pressure on the muscles that are sore does help. I see a pt and she does this massage for the carpol tunnel it's helpful but then it goes right back to the pain. I don't even have to do anything. I don't want to believe that I have something that isn't curable. There has to be something out there that can help. What do you think brought on your pain?
    • diagnosisisalie
      diagnosisisalie rebecca01586

      Posted

      I had a phillosphy about doctors, I didn't go to them . when you go to a doctor you find this out and then this and so on. Things that never bothered you before. THey reasoned with me about 10-or so years ago when I was raced into the ER for blood pressure , they made me promise to take my meds , which means I take it about 80 percent of the time. It was a new medicine , so I thought that it was a side effect that my hands got cold and were in pain in my sleep. I took the meds before Iwent to bed , makes sense. Always believed that God had a plan for me to do great things so I never made a big deal out of it, but always complained to hubby. Got sick about a year ago, where I bled and bled, refused to see the doctor , it continued. I went to the clinic at university , she told me to see this specialist that it was something that I can not even remember or cancer. I left crying, and crying. I went to my old OBGYN who said I had a fiboid the size of a 7 month fetus. He had to remove it and perform a hysterectomy . One of my ovaries was twisted so that was removed too. I was perfect for 6 months. I started leaking and it got worse. I saw a nurologist who told me that I had carpal tunnel in my right hand. He was the one who referred me to the RA. As time progressed pain spread from my back to knees, to elbows, to neck, to toes, to fingers, I swore it was bone pain.
    • rebecca01586
      rebecca01586 diagnosisisalie

      Posted

      That sounds terrible..I too believe God is going to heal me. That's really the only hope you have if doctors can't cure it. You just have to have faith and keep it..I'm having trouble with that. Lately I have no energy at all and normally everyday will be different and it will eventually return. Maybe I'm just too depressed. I'm sorry you went through all of that. I had a kidney stone after I had my son too, seemed to be one thing after another!
    • diagnosisisalie
      diagnosisisalie rebecca01586

      Posted

      God only gives us what we can handle. My back has been killing me, with my chest for about aweek. I have been doing mind over matter, thinking about where I was and how far I came. I could be worse , even though it is hard to imagine at times. I have a crazy personality ,so I were crazy things someties to just be different it gives me a different outlook and the public. My newest find was a neon orange hat. Everyone just stares and smiles.. My kids use to say dad was the mean one, he would yell , punish, but I was the crazy one they just never knew.
    • rebecca01586
      rebecca01586 diagnosisisalie

      Posted

      Yes he does. My husband always says I'm crazy lol. I hate how wen we are somewhere like the store or something and the kids are acting up and I am kind of just yelling cuz I can barely lift them or even spank there butts cuz my wrist are so weak, then ppl look at me like why aren't you doing anything about your kids and give me that your a bad parent look. They really have no idea. I try not to judge anyone cuz honestly only God knows wats going on or what isn't.
Back to top
Prev Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.