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Irisheyes815

574d

My Fibro is out of control. Many strange & weird symptoms that they claim are Fibro related. Idk if that’s really the case. My pain level is off the charts between the Fibro & severe back injury. Looking for people with similar problems to share what works & what doesn’t.

Top reply
    • TabbysMom

      538d

      I kept screaming till someone finally listened! It's been over a year! Anyway, I am waiting for a PA for spinal stimulator for neuropathy. So very many doctors!!! Finally the very last neurologist finally stepped up. Now up to ortho to get the PA done. I am believing!!!!!!

    • TabbysMom

      538d

      I kept screaming till someone finally listened! It's been over a year! Anyway, I am waiting for a PA for spinal stimulator for neuropathy. So very many doctors!!! Finally the very last neurologist finally stepped up. Now up to ortho to get the PA done. I am believing!!!!!!

    • Chosen1618

      541d

      Hoping you feel better

    • spookyspoonie

      546d

      Have you heard of ME/CFS? It is very often misdiagnosed as "just severe fibro"

    • justkittenya

      547d

      I have fibro, and also a condition called hypermobile Elhers-Danlos Syndrome (hEDS). It actually explains my pain more. I also have rheumatoid arthritis, as well as inflammatory arthritis. What other symptoms are you having?

      • dolphinblues

        538d

        @justkittenya my granddaughter, age 11, has hyper-mobility. She actually just got the dx this last Tuesday. It only took about 4 yrs to get someone to take me seriously and 2 yrs to find a Dr that would do anything for her. He said that it's possible she has RA as well, but he doesn't notice any swelling right now. Would you have any advice on ways to manage her pain?

    • sorenachy

      548d

      Another good thing I've learned is that if you have a doctor that refuses to accommodate you, i.e. handicap parking permit, pain relief, tests, diagnosis, tell them you want to see them document why they are refusing to in your chart. That may change their tune.

    • scurrly2

      549d

      Make a log into your phone via voice recordings, Google assist, Siri, Alexa, etc. "Google add backpack at 6:45pm". You can extract the text from your recordings and take the accumulated information to your doctor. **Whenever you go to virtual visit your doc, record the visit. Explain that you need explicits of the visits to refer to later. Accountability will be 💯 from all. ❤️ and ✨️

    • BeenThruIt

      549d

      Wow do I get what you're going through. Wading through the medical maze stinks and there's no map. I've found that who insures you makes a big difference. I've been through three. The latest one is the greatest disappointment. Do you feel supported by your insurance co?

    • Weneli

      549d

      Yeah they like to handle a lot of things what you could do is be very direct and ask her for the test.

    • Weneli

      549d

      You may want to get that rash checked. That put me something separate.

    • CandyP

      549d

      Glad to find other people here. Widespread pain, fatigue, anxiety and recently heart palpitations, hair thinning, and a rash on my chest. Ekg normal this heart thing is scaring me

      • dolphinblues

        547d

        @CandyP I know how scary unknown heart issues can be. I've had irregular EKG's off and on throughout the last 20 years. Been to 3 different heart Drs and none ever found anything wrong. They did stress tests and home monitor tests. Both were good. A few years ago I was having palpitations. Went to another heart Dr, who again could not find anything other than an extra heartbeat at times. I believe the palpitations were caused by a medication because as soon as I stopped taking it, they stopped. But, it wasn't listed as a side effect so no Dr would agree with me. I don't remember the name at the moment, but it was a med for over active bladder. It caused horrible dry mouth too.

        • CandyP

          547d

          @dolphinblues I've been informed a lot of my symptoms are fibromyalgia related

        • CandyP

          547d

          @dolphinblues they are saying it's panic attacks

    • Cat.Mom

      550d

      Your definitely not alone. Been dealing with it since 1990

    • LixiKat

      551d

      I actually found out that I may have MS but I’m still getting tested I get dizzy migraines nausea and pain when walking and moving a lot as well I also get foggy vision a

      • Weneli

        549d

        @LixiKat 😥🙏

      • JustRachelle

        551d

        @LixiKat which test did you get to determine if you may have it?

    • Weneli

      569d

      I bet. I want to a rheumatologist about 10 years ago and she told me to tell my doctor that's what I had but she wouldn't put it in writing and so the doctor didn't believe it and nothing was done.

      • Oouchthathurts

        569d

        @Weneli You definitely need to keep advocating for yourself until you get answers. I would call and ask for the doctor you saw records/notes of your appointment just to see what they wrote maybe you could find out why they wouldn’t put it on paper. Save those records of appointment and doctor notes they are always good to have for yourself especially in the future but some offices only keep them for 7 years. good to have especially when you are trying to get diagnosed

    • wise

      569d

      Have you had your B12 checked recently?

    • Weneli

      569d

      Ankylosing spondylosis?

      • Oouchthathurts

        569d

        @Weneli yes

        • Oouchthathurts

          569d

          @Oouchthathurts It’s very easily overlooked when people have fibromyalgia.

        • Gidgetmom

          569d

          @Oouchthathurts how long did ot take you to get that AS diagnosis. I found out I have the gene in May. I'm seeing a rhumatologist, but shes hinting that she's not making that diagnosis.

    • Breetlejuice

      570d

      Mine turned out to be AS too. If I let myself lay down too long like I want to, I get worse. Every section of my spine has at least 2 herniations. I go to the chiropractor weekly and utilize their massage chair. I use a ZenBody shower head for the pressure. Heat and creams. All the cannabis derivatives in those creams or tinctures help. But I’ve been in pain longer than I can remember. If I could afford another ketamine series I would do that for the pain relief alone. Sleeping positions are crucial. And not taking something that will make you sleep so hard your body doesn’t move positions naturally in your sleep is a big one for me too. I use cupping at home. Kratom for 3 days at a time when the flare won’t simmer down. I have to eat light foods. Grapes in yogurt. Saltines. Toast. And walk when I don’t think I can. It’s a lot of self care really. I also like drinking tea to calm my body down. I can’t do soda or too much sugar or too much caffeine. I put a lot of energy into making my spaces very calming and relaxing so I don’t get too depressed while feeling overwhelmed with pain. And I learned how to say “no”. Which sucks when it’s your kids asking to go to the park. But if I go to the park while I am unwell, I risk not being able to beautify them for picture day. Noting that the consequences of doing something can have a week long effect is good for how I set my expectations of productivity on myself and not the world’s view.

      • 55isMe

        552d

        @Breetlejuice agreed. Seems like every condition can be helped a little with exercise. Easier said than done, but try to do what you can , when you can. Ive had CFS trailed by fibro. Separate Chemo fixed them. At next cancer, more autoimmune stuff, mainly POTS. each case exercise really was a key in feeling better. Some days it only a couple minutes but others, i get in much more. I still did/do playgrounds. The kids understood when i couldnt do anything but watch, but still always wanted to go.

      • Weneli

        569d

        @Breetlejuice ❤️

    • MrsLove06

      571d

      I was diagnosed about 7yrs ago couldn't understand what was going on with my body. Since I have suffer from depression too, my doctors have me on Duloxetine and Gabapentin as a regimen for my pain. It's debilitating and I have no emotional support at home since my husband doesn't understand why I'm in pain and in bed all the time

      • cardeg

        546d

        @MrsLove06 I take the same combo. How much gabapentin are you on? I take 800mg 3 times a day...and maximum dose of duloxetine...also on 10 mg Flexeril every night...for stage 4 sleep...I've had fibro for 30 years. It's well maintained except for the fatigue ...I also have severe depression and anxiety... osteoarthritis is my pain now...I've had 5 surgeries on different joints and anticipate more....talk to your Dr to see about increases on those meds....same thing does not work for everyone....

      • Weneli

        569d

        @MrsLove06 💕

      • Sn

        569d

        @MrsLove06 Gee that’s hard. My husband has a hard time dealing with my pain also with my Fibromyalgia, Osteoarthritis, Scoliosis, Raynaud’s & a Ulnar nerve causing problems with my hand. This site is so helpful.

    • Sn

      573d

      What is AS?

      • Gidgetmom

        551d

        @Sn Ankolosing Spondilitis

    • Oouchthathurts

      574d

      Have you ever looked at AS ? This can go hand in hand with fibromyalgia. For years I was told over and over I just had fibromyalgia and I kept telling them ok but there’s something else too. Only after many years later did a doctor say I have AS and fibromyalgia. Like you my several injures could have brought on AS you might want to research this. Be your best advocate do not stop looking for answers, you know yourself the best.

      • Gidgetmom

        551d

        @Oouchthathurts I found out on May I have the gene for AS but it can also be PA. I'm doomed

        • JustRachelle

          551d

          @Gidgetmom if you don’t mind me asking.. how did you find out you have the gene?

      • Gidgetmom

        569d

        @Oouchthathurts ankolosing Spondylitis?

        • Oouchthathurts

          569d

          @Gidgetmom yes.

    • Raquel226

      574d

      If you feel comfortable sharing, what are your strange/weird symptoms?

    • Fluffy_Mingo

      574d

      Get an x-ray. Found out my spine is degenerating. Gotta wait to do MRI for more answers

    • faerywyrm

      574d

      I am sorry for your pain. I can relate. I get nausea, migraine, shakes, and dizziness when my fibro is bad. I take Tizanidine for the fibromyalgia, and add Tylenol and herbal teas to help the muscles try to relax a bit. Sometimes it helps. Also, I keep in mind that it will get better.

      • NCDIXCHIX

        552d

        @faerywyrm some of the symptoms you mention can be side effects of Tizanidine. So many of our medications are just as bad as the condition 😥

        • dolphinblues

          550d

          @NCDIXCHIX I agree. Tizanidine has some horrible side effects. Plus it doesn't really work well for chronic pain. But, most Drs don't like prescribing anything else for Fibromyalgia.

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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