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

What is this feeling exactly?

Posted , 8 users are following.

carrie84430
carrie84430

So I don’t actually have a fibro diagnosis, but most of us on here know that a diagnosis and/or understanding of fibromyalgia is ambiguous at best. Whatever I am experiencing seems to be most similar to this or cfs or the like.

The problem I am having is describing my symptoms. I usually just default to saying “weird sensations”. I can’t seem to find the words to explain it. Tingling isn’t quite right, burning seems a little off and itching isn’t exactly it... its like all three of those. Then you add in the feeling of blood rushing or skin crawling or pressure and numbness. When I try to explain this to anyone, especially doctors, their eyes glaze over. If I were in their shoes I’m certain I would so the same. 

Is this what other people experience? I hear a lot of stories of pain, but what about this tingly/burny/bloodrushy/skin crawly/itchy stuff? How do I get a doctor to take that seriously??

0 likes, 7 replies

7 Replies

  • cat61777
    cat61777 carrie84430

    Posted

    I was diagnosed by a rheumatologist  and neurologist as I have bladder issues that means I go to the toilet more than 10 times through the night that keeps me up, I get pain, sharp stabbing pain in my left hip that radiates into my pelvis that travels down into my leg and feet, I get hot sweats that I wake up soaking, sleeping problems, eye stabbing pain and left facial pain, not burning but pain, I get numbness in my left side of my face, memory problems and emotional problems ehen taking a flare, extreme chronic fatigue that makes me bed ridden and the pain in my legs mainly left side is sharp stabbing pain that effects my ability to walk. If your doctor thought you had fibromyalgia you would be referred to the appropriate specialist. 
  • victoria93835
    victoria93835 carrie84430

    Posted

    Hi Carrie, 

    Sorry to hear your going through such a tough time xx I was diagnosed with fibro 3 and a half years ago. I have so many “weird sensations” that hard to explain but the most common is real intense pain every where in my body when Iv a bad flare. It can be a pain sensation such as burning, stabbing, throbbing just a feeling someone is stamping on you all over. Those sensations can be one or all of those above at once. Fatigue and pure exhaustion is a horrible feeling. 

    Do you feel this in your entire body or just in places? Fibro is usually pain everywhere in the body. I could have a pain in my toe now and in a 5 mins Iv a pain in my head! It’s weird and it’s so hard to explain that to someone because it sounds ridiculous even to me! I still don’t understand this illness.

    Do pain killers help? I’m off all my pain killers because they don’t work at all. I do yoga (just stretches) when I’m sore because it does relieve pain. Give it a go even just touch your toes, this stretches your back, legs and arms. Make sure to breath and stay for as long as you can. See does that help with the symptoms. It’s only short term but when your bad even 5 mins without pain is great.

    It’s funny you have those symptoms because my husband was complaining of the exact same thing a few months ago. This is a man that would never ever go to the doctor but this freaked him out.

    He went to the doc and he ran blood tests and checked him over and found nothing. This went on for months. The sensations just disappeared on there own. He only got a full health check with work 2 months ago and he is perfectly healthy.  We never found out what caused it but it did go away on its own. 

    Hope this helps a little x any over question just ask xx

    Gentle hugs 🤗 

    Victoria 

  • bill38615
    bill38615 carrie84430

    Posted

    God I wish I knew! Pain is pain,it hurts,the sensations we all seem to have remind me of water rushes with hot nettles or similar.

    I have a new doctor who answers everything with"I don't have an answer for that" then sits looking through me.

    I know not but keep pushing for answers.

  • josephine33162
    josephine33162 carrie84430

    Edited

    It is dificult to explain your feelings. I try to tell my doctor about my pain but he only concentrates on one part of my trouble at a time. While he thinks i got pain , say in my knee or back he;s forgotten that it,s all over me. I used to get what you seem to discribe but now i've got worse and pain is everywhere. Last time i saw doctor he told me that fibro was relatively new and not much is known about it. Not good for me.

    • carrie84430
      carrie84430 josephine33162

      Edited

      It’s weird becuase the symptoms stick around a while and then go away but are always replaced by something else. These tingly things went away for a while and then I did a very difficult workout the other day and the next day I really felt like I had pop rocks in my veins 😬 There is only one symptom that never goes which is a pressure or odd feeling in my head and face. I just want to know whatI have and what causes this. Living without answers seems unbearable 

  • JennaKiah
    JennaKiah carrie84430

    Edited

    I was diagnosed in 2015 and I honestly thought the doctor was crazy. Back then we didn't have much info and we still don't. My pain has changed so much. The medications only work for limited amounts of time then I have to change them or try something else. The fibo fog has gotten much worse this year. I don't even bother to explain the pain to the doctors anymore. They have no idea what we're going through. I am ultra sensitive to the cold but I am also ultra sensitive to the heat. It's a no win unless it's 70 degrees with a breeze and I live in Boston! 

    But I do have a suggestion, write down what it feels like to you. Lay on your bed while you're feeling it and relax and try to explain it to yourself. That is the only way I can imagine finding a way to explain it... gentle hugs to you Carrie.

  • karin38437
    karin38437 carrie84430

    Edited

    Hello,

    I have been experiencing these self same symptoms, an itchy, scratchy, crawling sensation but with me it's in my boobs.

    I get this once in a while and have had mammograms done but nobody seems to know what it could be.

    One doctor recommended progesterone cream but that did nothing.

    I know it will go away at some point but when it flares up it's horrendous.

    I wondered how you are getting on?

Back to top

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.