Irisheyes815

41d

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.

Spondylolysis

Skin rash

Symptoms Involving Nervous & Musculoskeletal Systems

Chronic Generalized pain

Edema and Anasarca

Palpitations

Ketamine

Tizanidine

Acute Anxiety

Chronic Nausea and Vomiting

Nausea and Vomiting

Fibromyalgia (FM)

Osteoarthritis (OA)

Gabapentin

Joint pain

Generalized pain

Backache

Dizziness

Duloxetine

acute lethargy

View all
  • faerywyrm

    41d

    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

      19d

      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

        16d

        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.

  • Fluffy_Mingo

    41d

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

  • Raquel226

    41d

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

  • Oouchthathurts

    40d

    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.

    • Teardrops

      40d

      what is AS?

      • Raquel226

        38d

        I think he/she is referring to Ankylosing Spondylitis.

    • Gidgetmom

      35d

      ankolosing Spondylitis?

    • Gidgetmom

      17d

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

      • JustRachelle

        17d

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

  • Sn

    39d

    What is AS?

    • Gidgetmom

      17d

      Ankolosing Spondilitis

  • MrsLove06

    38d

    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

    • Teardrops

      38d

      if you ever need someone to chat with to be an emotional support just message me

    • Sn

      36d

      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.

    • Weneli

      35d

      💕

    • cardeg

      13d

      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....

  • Viewfromthehammock

    38d

    You sound like me! This year has been the worst!!

  • Breetlejuice

    37d

    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.

    • Teardrops

      36d

      how many ketamine treatments did you get? I had one, for like 3 hours don’t remember any dosage. But besides making me a little loopy and dizzy and very tired during the 3 hours I didn’t get relief and was very upset since I paid out of pocket for the treatment and can’t afford to do that again…. Plus I am in a new state with different doctors and blah blah blah. I would have figured out some way to pay for the treatment if it would have worked. But nope 👎. 😥 😥 😥. I am not always good about saying “no”, and end up overworking myself, which results in extreme pain. To which I have very little options for find relief.

      • Breetlejuice

        36d

        it’s supposed to be a series from what I’ve learned so far. I did 6 sessions in 3 weeks. 2 a week. Each session was 1 hour and I was completely out of the world and in a very inner peace kind of place. Which is actually the goal of true meditation. The highest level of meditation mastery leads to the same kind of place as the ketamine peak did for me. I work with someone who is doing an Ayurvedic meditation guidance business. Anyway, the dose is by weight, I would think they spread it out to 3 hours with that dose but it was too diluted to work as effectively. That is just my guess though. I’m really sorry that happened to you, that would be so very disappointing. The treatment I did was about 2k in total. The Mindbloom type options they have available now is all in-home and with a pill instead of an infusion. I’m not sure how those compare but even those are a series because the goal of the ketamine is to let your brain rewire itself as naturally as possible. An unnatural way of reworking your brain would be TMS therapy. Which I won’t consider because my best friend from therapy lost her memory and personality and a lot more of her well-being while doing that kind of treatment. The at-home ketamine options aren’t restricted by states as much and are more affordable and the payment plan set up is a lot easier too. So it may be 700, but you can pay for months so it’s easier to budget in.

    • Weneli

      35d

      ❤️

    • 55isMe

      18d

      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

    36d

    Ankylosing spondylosis?

    • Oouchthathurts

      35d

      yes

      • Gidgetmom

        35d

        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.

      • Oouchthathurts

        35d

        It’s very easily overlooked when people have fibromyalgia.

  • wise

    35d

    Have you had your B12 checked recently?

  • Weneli

    35d

    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

      35d

      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

  • LixiKat

    17d

    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

    • JustRachelle

      17d

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

    • Weneli

      15d

      😥🙏

  • Cat.Mom

    17d

    Your definitely not alone. Been dealing with it since 1990

  • CandyP

    16d

    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

      14d

      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

        13d

        they are saying it's panic attacks

      • CandyP

        13d

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

  • Weneli

    15d

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

  • Weneli

    15d

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

  • BeenThruIt

    15d

    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?

  • scurrly2

    15d

    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 ✨️

  • sorenachy

    15d

    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.

  • justkittenya

    14d

    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

      5d

      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?

  • spookyspoonie

    13d

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

  • Chosen1618

    7d

    Hoping you feel better

  • TabbysMom

    4d

    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!!!!!!

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