It’s been awhile since I’ve been on this forum. I’ve been holding steady and managing my symptoms well until about 6 months ago. I’ve had fibromyalgia most of my life but wasn’t really diagnosed till in my 40’s. I’ve been blessed that I’ve managed well without too many meds since none of them agree with me. I tried Cymbalta once and spent the first night in the bathroom so even though my PCP wants me to try it again I’m not eager to. I have developed new symptoms that sent me to my ortho doctor. I have degenerative disc disease so I have expected some issues but not the dizziness and nausea that are occurring. Sometimes it feels like I’m having a heart attack but my EKG is always fine. Numerous muscle spasms are occurring also and I have neuropathy so in other words I have been feeling like heck lately. Just can’t seem to do anything without a struggle and sleep of course is a big no. My pain specialist gave me Gabapentin and Baclofen but they just make me more lethargic. I’ve been having ocular migraines occasionally which are very frustrating and not sure what is causing them. My ortho doctor just says my muscles are too tight. Like I don’t know that already I wake up every morning with a sense of dread that the day is going to be worse instead of better. Im pretty sure all my new symptoms are just part of fibromyalgia but I’ve just not experienced them before. Does anyone have similar symptoms and are there any supplements you have found that help. I was seeing a chiropractor every week but my ortho doctor says that’s too much and it actually didn’t seem to help much anyways. I would appreciate any input or advice anyone has.
Hi, bookjunkie - good to hear you’ve had good times.
Always hard re-adjusting to new symptoms, and so many…
I always take each for itself, ascribing them to “fibro” doesn’t help me, meds neither.
- dizziness/nausea: so many possibilities… I’d start with meds? Then: Muscles/stance?
- pseudo-heart attack: I’d consider chest muscles and try youtube costochondritis exercises etc.
- muscle spasms: Tried drinking enough? good magnesium? gentle short exercises?
- struggle: fatigue? Tried carnitine, good magnesium, CoQ10?
- sleep: Big one: Tried preventing triggers? Magnesium, passiflora, Q10, rhodiola, quercetin, amino acids (GABA)…? Yoga nidra videos.
- meds making lethargic: So many did me - bad, cos it stops self-discipline & self-care, glad I stopped.
- ocular migraines: aspirine/ibu? acupressure videos? GABA? Trigger diary? (for nausea too)
- tight muscles: GABA? (= gamma aminobutyric acid starting with 125mg sublingually). Magnesium?
- sense of dread: Self-care, acceptance, relaxation (e.g. videos)?; trigger hunting, preventing, alleviating? Symptom diary; lists of what to tackle, then prioritize and work thru?
- chiropractor once a week not helping: I went to an acupressurist for 4-5h per week for over a year and she got all my local pains down, now a massage pistol and youtube acupressure and exercise videos are enough. If something doesn’t help, and I can’t help myself, I’d immediately look for a better one.
If this seems too much, the first step might be just to decide which symptom to start with.
Or try a good magnesium, as that may improve several: magnesium glycinate probably helps sleep (for most people) as well as muscles & fatigue.
Hope some of that helps?
costochondritis is the swelling of your sternum, feels like a heart attack. Was diagnosed when the ER sent me for a mammogram & ultrasound. The doc doing the ultrasound went across my right breast then stopped & said “your sternum shouldn’t be this big”. Heating pads are great for relief.
DDD, haven’t had the nauseous & dizziness but other issues from it.
Migraines, had since I was a teen. Finally after all kinds of meds & Botox injections (OUCH!!), I got a daith piercing. Once the migraines came back I had the other daith pierced. I praised God for sending me to these people to have those piercings done. Went from everyday migraines to couple a month.
Praying you find some relief!
I’ve had a lot of success with acupuncture. I’ve been doing it for many years. I highly recommend it. I also use medical marijuana on occasion. It’s the only muscle relaxer that’s ever worked for me. If you live in a state where it’s legal should try a small dose and see if it helps.
Bookjunkie: Ditto to almost all your problems, I got tired of feeling like a zombie with all the meds I’ve been given. Sleeping has always been an issue along with migraines. In frustration I tried first CBD cream on what hurt ( they have different strengths found the right one) surprise it helped the muscles, then I tried pot. Researched what type for what found what I needed relief. I now use the brand five. They have choices, five is a combination of THC and CBD they also have a night one that uses melatonin, this product is hemp based and legal.
I did discuss this with all my doctors prior to trying it. You may also need to check your D3 and B12 levels too.
Hopefully you can find something that works.
I have been going on 5 years trying to get a diagnosis. Not officially diagnosed, but on meds from by PCP for Fibro since she can give them to me for ‘anxiety’ from the weird heart palpitations that can feel quite off putting. since shes not offically allowed to treat me for fibro without a specialist and those have not gotten me anywhere yet, its the best she can do.
I have similar stuff going on just mild enough to still live my life fairly normal with adjustments. The migraines are starting, but it seems on the weekend when I don’t have a cup of coffee, I am going to experiment this weekend to see. But I am very lucky because I work from home with a flexible schedule. Just work 8 hours in any manor or time frame I like ( so lots of breaks and naps when needed)
Cymbalta didn’t make me throw up but it certainly gave me stomach issues. I wouldn’t tell you that it was definitely the Cymbalta that caused you issues, and it could be worth trying again; but, you know your body better then the provider, and while the vomiting could have been a coincidence, I am also saying it could have been the issue.
I am on Gabapentin and Amitriptyline, and it does seem to at least mitigate the pain (winter is the worst for me personally) without much feeling to out of it. and when things are really bad and I cant sleep I do take some eatables ( I have to be careful cus even the slightest to much makes me dizzy). I am going to get some Magnesium! I did take a magnesium bath the other day and it really helped, so I am adding that tip to my medication/vitamins.
Thanks to everyone for the feedback. I’m sorry to not have responded sooner, it’s been a crazy 3 weeks. I’m in charge of all my 95 year old Mother’s business and it keeps me hopping. I had a visit with my ortho surgeon and he seems to think a lot of my symptoms have to do with my degenerative disc disease. I’ll be honest, I’m not so sure but he wants me to try physical therapy so I will. After 2 MRIs on my spine I
guess he’s not seeing anything else. I had an EGD last month and I have esophagitis with a small hiatal hernia so I guess it could cause the chest pain but I’m thinking it’s more costochondritis as was mentioned since I’ve had that chest discomfort for 30 years and more. I’ve used gummies for sleep but they make me dizzy. I can’t use a lot of meds because they interfere with my afib medications. I used to take magnesium but now can’t because of the heart meds. I will ask my cardiologist again about it because I thought it helped with the muscle pain. Does anyone else have the same issues with Gabapentin and Baclofen that I do? They all seem to make me dizzy the next day. I’m really hating the constant balance issues. I’ve been considering seeing a neurologist but I’m so sick of doctors just shaking their heads like I’m a hypochondriac that I’ve put it off. My cardiologist suggested seeing a cardiac specialist to have an ablation done so I can get off my heart meds to see if that is what’s causing some of my problems but that’s a pretty scary procedure. Does anyone feel that Gabapentin helps with the muscle spasms or just the nerve pain?
I sure appreciate all the suggestions and will be checking with my cardiologist about them. My primary care doctor just says I’m weird and I see too many doctors.
I’m grateful for all the support and I’m sending warm hugs to all. Keep in touch!
You ask about Gabapentin and from my own experience I’d say ‘Stay Away’ BUT I have a close friend who swears by it. I’m a member of another community and of the dozen or so members who have been on the medication it seems there’s a dozen or so differing responses to effects, side effects, benefits and negatives.
I asked the dr’s about this and was told 'We’re not really sure how it works but for some people it seems to work wonders and yet for others, not so much". Obviously I’m in the ‘not so much’ category, but it seems it’s one of those meds you trial and if the benefits are there for you, that’s a bonus. If the negatives outweigh the positives you reconsider it as a treatment. DO NOT just cease taking these medications though. With some of these medications a slow tapering off over time can be needed. Ceasing use suddenly can send our systems a little haywire. My body systems are a bit haywire to begin with coming off of it sent me down a dark hole. Talk to your dr about any changes of meds.
Hope it helps
Merl from the Modsupport Team
where do you focus when you get acupuncture? head/face?
Hi Marie & welcome to our forum ! - Chucky might still find your question, but praps I can help.
I’m not sure what exactly you mean tho - the needles are put all over the body, more than in your face/head.
I’m on my 3rd stint of acupuncture (9x negligently, 1x supposedly for fibro, and now real Chinese 16x and running). In each of these 1 needle was put at the top of my scalp, and often one in my forehead, praps sinuses if they were acting up, once 2 needles in one ear. But every time about 20-24 needles were used altogether. Until the cupping by the Chinese acupuncturist wasn’t helping my energy/fatigue, when she decided to put needles next to my spine (24-28) which has made a lot of difference, started build up my energy properly. The other two stints didn’t help at all, just hurt - but acupuncture doesn’t hurt most people at all. It’s got a certain evidence for fibromyalgia, so definitely worth a try, but most who have had success with it recommend to make sure it’s someone really good who does it. Quite a few people recommend Chinese acupuncture, not the watered down Western modification, but some don’t tolerate the thicker needles. For me some (about 4 of the 46) hurt a bit more while putting in, but less once they’re in and after…
Oh, I forgot: you can track the mixed success on my blog here.
I have almost everything you do. I was recently taken off my pain meds. My system doesn’t take “better living through chemistry” well. My research turned up these herbs & they help to a certain extent.
White Willow (Salix Alba) 400 mg 3X/day
Full Spectrum Curcumin Liquid Extract (softgels) 48/40 mg 1/day
Boswellia (Indian Frankincense) 250 mg 2X/day
I also take Vitamin D3 5000 iu/day. I can’t take Vitamin C or folic acid. Both trigger fever blisters. Go figure. Hope this helps.
Do you have a primary care doctor who keeps track across all of your challenges, diagnoses and treatments? I have had some of these sorts of symptoms (sense of dread, feeling like my heart is racing, dizziness, tingling lips). I ended up being told likely panic/anxiety attacks. Certain medications made these symptoms MUCH worse. It is possible that a medication is triggering/worsening some of these symptoms for you in addition to what you already have to deal with.
I had a friend recommend trying floatation session (super saturated epsom salt baths). Some are done in tiny tanks (NO thank you!) and the local one is a large tub in a private room. I’ve found it helps a little with the muscle tension. I also use a TENS machine, but I don’t know if that would be helpful in your case.
I hope you find some useful answers!