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New to the group..Not yet diagnosed..Advice??

Posted , 7 users are following.

Rach89
Rach89

Hey ya'll,

Im new to the group and wanted to get some advice or input on symptoms etc....

I originally joined the group "adrenal insufficiency" because thats what I thought I had for a long time until my ACTH Stimulation test came back negative..now my doctor set me up an appointment to see a rheumatologist and thinks I might have fibromyalgia.

My symptoms have been consistant the past 7 months or so. My main symptom being severe fatigue throughout the day. (Cortisol is low in the morning) which is why i thought it might be due to my adrenals. I am currently on Nuvigil which is pretty much for people with Narcolepsy which I don't have, but its the only thing that gets me thru the day....Im an esthetician and own my own business and it has become increasingly difficult to get thru the day. I have had to cut back on my hours alot. I have had body tremors that come and go. (mainly in my legs and feet and only notice it when im sitting or laying down not doing anything). As far as the "normal" fibromyalgia symptoms like the joint/muscle pain. I can't say I have much pain. I do occasionally get muscles and joint pains in my neck, arms and legs especially from bending and leaning over while working, but its not my main concern at all..I do have the brain fog and have a hard time concentrating and forget things very easily...the first few months of my symptoms I was able to work out almost every day for an hour to an hour and a half and be fine, and now i have no energy to work and am weak/tired and nauseaus after 15 minutes of cardio workouts...its very frustrating....

I have become extremely irritatible and anxious for no reason and I don't know if it could be partly from my medicine or if it could be something else....

Anyways im still learning about fibromyalgia, but im just not sure if I actually have it or not. I will find out next month at my appointment. Has anyone else experienced "non-typical" fibromyalgia symptoms and been diagnosed?? What other symptoms do yall have? Maybe I have other symptoms and not realized it yet...

Thanks everyone!

0 likes, 11 replies

11 Replies

  • naomi402
    naomi402 Rach89

    Posted

    Those are the same symptoms I started with.  Mine is mainly extreme fatigue, lack of being able to sleep,  some tremors, anxiety. Not the usual joint pain but muscle fatigue and then I got the burning nerve "stuff".  My Rheumatologist said there is some crossover with Fibro and CFS.  They have some differences but they also share some similarities...that is why it is so hard to know for sure sometimes.

    I have found that supplements work better for the fatigue and you might want to try something called d-ribose.  Im not a doctor and dont know what else your on but you might want to look it up.  It has helped my fatigue a lot.  Also look into L - acetyl carnitine, malic acid and lots of magnesium, coq10, taurine, etc.   Of course talk to your doctor or find a wellness doctor or someone to guide you with the supplements.  PM me if you need some references on any of it.

    • Rach89
      Rach89 naomi402

      Posted

      Thanks for replying naomi! That really helps! I would much rather be on supplements. I will definitely look into those!
    • kiki74
      kiki74 Rach89

      Posted

      I started off the same way as well. Doctors did nerve tests years before. I had tremors and tingling. When the tests came back negative they just chalked it up to anxiety and stress from work. Same with the ibs.

      I already had cfs due to epstein barr so it wasn't until the pain hit that I was able to get diagnosed after several tests and doctors. It's frustrating waiting for a diagnosis. When you do, talk over options with your GP and also a wellness doc. I couldn't take the prescription meds due to side effects so I am also taking supplements instead of drugs. You will have to find what works best for you.

    • Sare145
      Sare145 naomi402

      Posted

      Hi, I think I have fibro although I've seen a rheumatologist who says I don't have it. I have some weird symptoms,similar to you and Rachel , fatigue terrible anxiety and then depression ,which all started after developing pain in my hip in January this year( which is due to bursitis) I don't have severe pain ,but have pain in my hands and feet ,which feels like joint pain. I did have some tremors but they've stopped since I became less anxious. I've had to take an antidepressant as I was in such a mess. .Prior to this I was healthy ,working full time as a nurse ,and doing 4. Gym classes a week. I've been off sick for six months and am slowly getting my life back but it's been a struggle. 

      A lot of my friends think it may be hormone changes ,and originally my Gp said it was peri menopause- I'm 49 ,so may be a combination of things are going on. 

      Anyway ,whatever it is ,I'm so fed up with it ! I'll try anything to feel better .

      Naomi ,could you please PM  me with the details of what has helped you .

      Are you in the Uk?  Do you take anything for the nerve pain?

      im interested in trying the d ribose ,and anything else that's helped .

      Thanks ,Sare 

  • tyler53997
    tyler53997 Rach89

    Posted

    it took a really long time for doctors to diagnose me with fibromyalgia so dont give up! I had a lot of fatigue and depression, and random flares of excruciating pain in my back and knees that left me in bed for days. The frustrating part was that my doctors didn't think there was actually anything wrong. Now that I've been diagnosed I've had better luck with treatments. Hope you find out whats wrong soon. 

    • Rach89
      Rach89 tyler53997

      Posted

      Hey Tyler,

      Thanks for responding! Yes the most frustrating part for me as well is not knowing what's wrong with me and the doctors not being able to figure it out...they seem to want to blame everything on being stressed..I mean I know I'm stressed, but I am always stressed I run my own business and deal with people al day so it's normal...but I haven't always been completely exhausted and anxious. Just want to be able to function again...

      How did the doctors figure out you had fibro?? What tests did they do?

    • naomi402
      naomi402 Rach89

      Posted

      The correct adrenal test is important. A regular blood test for cortisol levels and adrenal function are not always accurate. The saliva test that is done at 4 different times of the day is much more accurate. My reg GP did a traditional blood test and said my cortisol levels are OK. I knew they weren't just by my symptoms. My Wellness doctor ordered a saliva test and called the day she got.it and said my cortisol levels were off the chart high . Hence the sleep, fatigue issues among other things. Something for adrenal support is important with fibro and cfs

    • Sare145
      Sare145 naomi402

      Posted

      Hi Naomi, I sent you a PM ,asking for advice .i don't know if you've seen it ?

      i know you're not meant to post supplement brands etc here ,so if you could PM me I'd be really grateful. Thanks 

    • naomi402
      naomi402 Sare145

      Posted

      I did PM you with a bunch of info. I'm dont know why it isn't showing up

  • Guest
    Guest Rach89

    Posted

    Hi Rach. I've had symptoms about as long as you have, also undiagnosed (but seem to be getting closer). Fatigue is definitely a major part of Fibromyalgia! It's worse during flare ups, and can subside in between. When you say "tremors" do you mean twitches, as in fasciculations? Brain fog is very typical of FM, as is anxiety. Many people with FM are triggered by chronic stress, or perhaps PTSD from a traumatic event in their past. It's great that you're not in a lot of pain, though that tends to be the main symptom of FM (it's a pain disorder). What's your diet like? Do you have any lab results done recently? Are you sleeping well?

    If you do have FM (I realize you don't know for sure yet), work on reducing your stress level if at all possible, in whatever way works for you. Also, don't work out so hard - make sure to get some exercise reguarly, but pushing yourself tends to lead to more symptoms and less healing. Clean up your diet as much as you can, moving away from gluten and dairy, toward anything fresh and/or green. Research FM online, but if it gets you anxious, give yourself a break from it. Look into a good B vitamin, Vitamin D3, and Magnesium Citrate (all are cheap supplements available everywhere, and hard to go wrong with). Drink plenty of water and try to get lots of rest.

    Write your symptoms down and update it as they change. Consider keeping a diet diary. Not knowing what's wrong is stressful, but don't let it control you. You're not crazy. Control what you can, and leave the rest alone. Good luck smile

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