Fibromyalgia - Does anything help relieve severe pain during flares?
I was officially diagnosed with Fibro two years ago. I don't take any medications except for 5mg Flexeril (muscle relaxer) at night during flares, and some supplements recommended by my functional medicine Nurse Practitioner that don't seem to be helping. A hot bath before bed helps a little.
I'm now in the middle of a flare and in extreme pain all day. I try to stay busy to take my mind off it, but it's very hard to cope.
I'm very reluctant to go on meds such as Cymbalta, Lyrica or Gabapentin. I've read they often don't help and have bad withdrawal issues if you want to stop taking them. Most doctors don't offer much help except for offering drugs, with little knowledge about their effectiveness and side effects.
I'm looking for support or help with how to continue living with this. What works for others with Fibro to lessen the pain?
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I haven't really found anything that stops the Fibro Pain instantly when I am having a flare up but some things do help. (I usually get a flare up if I have done some out of the ordinary heavy lifting, and in between I don't have a lot of pain so I'm lucky that it's not constant). The pain can be so bad at those times that I also become brain foggy and extremely tired. Many of my muscles feel tight and hard like rocks and I can feel arthritic and stiff as well. I find taking marijuana gummies especially Sativa during the day and Indica at night helps. Also taking Epsom Salt Hot Baths helps. Additionally my husband massages all my affected muscles out. I'm very lucky cause he likes doing it. Sometimes he needs to apply so much pressure that I feel bruised afterwards but it's a kind of exquisite pain/pleasure when he massages the muscles out and when he starts I don't want him to stop. I usually have him massage the muscles for many days an hour each time until I feel so bruised yet more flexible and take a break knowing that my body just needs to rest. I have a theory that my body has to clear out the toxins that were created when the muscles became extra stiff and tight. Eating low inflammatory foods and/or low histamine foods seems to help. Changing the diet does seem to help. I avoid Gluten and Dairy and Sugar at these times. Also getting more rest and sleep is important too. Reducing stress is also important. I try and stay positive because I know that eventually the pain dies down and I will feel almost normal again until the next flare up. I try to be careful to do some fibromyalgia exercises on a daily basis to keep the muscles loose and flexible but sometimes I don't exercise as regularly as I would like. Also, drink a lot of water because when you have a flare the muscles need to heal. Hope this helps. You could try taking H1 and H2 blockers like Allegra and Pepcid. These drugs reduce histamines in the body.
Thanks for your recommendations. I never thought about taking Allegra for
this. I used to take it most often for allergies. Lately I have been taking
generic meds that put me to sleep instead. Do you get itching? Seems like
most nights I cannot sleep because of itching. The allergy meds help.
At times I get itching. Right now I don't have it. It's usually worse in the winter months so I try to use a cream most days like Aleavia. That one is very soothing. If I get itchy and get any hives it can be unbearable and the dermatologists really didn't have any suggestions other than a $1000 per month shot and I didn't want to spend that plus I thought it might have dreadful side effects. I find marijuana edibles to be very helpful. If you are not used to it start small and you can build up to the dose you need. I usually take 1/3 to 1/2 of a 10mg THC edible. You can use Sativa during the day and Indica type for. night time. I purchase ones that are solvent less and don't have preservatives or any food coloring nonsense. I've been enjoying the Lilly Brand but it depends on the state you are in and the region what you'll be able to purchase. When I take the edible I am still itchy but it doesn't bother me and the Indica type helps me sleep without scratching. It makes it much more bearable. It will take about an hour to feel any relief. The only reason I take Allegra is not for the itch (it doesn't help me with that) but because I suspect I might have mast cell disorder. I had a severe case of Lyme disease and I've read that 50% of people with Lyme end up with mast cell disorder where the mast cells (immune cells in the body) become dysregulated and they spit out chemicals when they don't need to, like cytokines, etc. I know someone who was diagnosed by a mast cell specialist and they recommended H1 blockers (like Allegra) and H2 blockers (like Pepcid) to calm down the immune overreactions. I started taking it and changing my diet to a low histamine diet for a period of months and it seemed to work. I now feel good most of the time and have an occasional flare up which could last a week or two but the frequency of the flareups has decreased and I feel much better generally. I also believe I could possibly have some of the genes that cause Ehlers Danlos Syndrome so that might be a contributing factor but I haven't been diagnosed. I have some kind of mild type because I don't have the extreme symptoms of the syndrome. When I exercise strenuously my muscles seem to become inflamed, tighten up, and hurt horribly. and the don't relax easily and I become arthritic for a time until they calm down. Anyway, try the marijuana edibles in a low dose to help with the itch. I don't drive when I take them. I take them usually in the evening before bed when needed.
I have that problem too. Antihistamines help. I even turn my lower underwear inside out and my night clothes inside out because anything, even the seams makes me miserable and itch. We are super-sensitive. It is as if the whole body is on high alert. I really think it may be related to all of chemicals in the water and food chain. Our bodies are telling us there is something wrong and the system is trying to fight it. I have ordered a water filtration system to get the junk out that is left by the water treatment facility (recent article on chloramines as a possible hazard. This was in the information "Chloramines are a chemical compound used to disinfect water and are made by mixing chlorine and ammonia" plus the controversy about Fluoride. See the news on what the farmers are using to fertilize their crops (meaning -- Organic -- means nothing because the "stuff" comes up through the soil, into the plants and into the crops.) Do a search on Newsnation Now for the article entitled 'This is my Chernobyl:' Texas ranchers watch cows die because of PFAS" ( Per-and polyfluoroalkyl substances).
Source: "biosolids sludge" which is defined as "Biosolids are a product of the wastewater treatment process". So it seems, that in more than one state, water treatment facilities have found a new way to make more money by selling all the nasty stuff that they take out of the water in their treatment facilities, to the farmers, and it comes right back to us. So, it is in our meat and in our food supply - plants.
How in the world can we escape. And then the medical folks say we are suffering from depression so they prescribe mind medications to "make us feel better". What a world we live in.
You are extremely knowledgeable about the toxins which we may very well be reacting to. Other theories are: 1) that our central nervous systems are in high alert due to childhood trauma or other traumas and we need to calm down the system, 2) our mast cells have been impacted/damaged or are overly sensitive and are spitting out chemicals incorrectly and overshooting the mark and damaging healthy tissue (cytokine storm) ... in my case Lyme Disease and Babesiosis (bacterial and viral exposure) contributes to or causes the damage. 3) We have the MTHR gene mutation. I haven't researched this very much but from what I've read a lot of people have this genetic mutation either a single or double copy and it prevents methylation ... meaning that you can't eliminate the toxins easily once our bodies become exposed to them. It also may affect our bodies abilities to absorb nutrients. Then when we are exposed to something toxic we immediately react because we ar already full of toxic material and our cells can't eliminate those toxins quickly so we suffer. I believe when we are having a flare up our bodies are becoming full with toxins and when we are able to detox then systems improve. So perhaps Fibro is related to all of these possible causes: childhood trauma, toxins in the environment, inability to remove toxins easily due to the MTFR genetic mutation, and exposure to virus's and bacterias. Therefore I try to eat organic and get the purest water and avoid seed oils plus selecting foods that are low inflammatory and possibly low histamine, and figuring out your food sensitivities and then avoiding those foods for a period of time until the immune system calms down. Eliminate the toxic load and you might feel better. It does take a lot of work and determination to do it because we are sensitive and our environments often have things that are toxic to us that's outside of our control.
I can't believe it! I tooo turn my underwear and pajamas inside out for bed! Thank you for confirming my weird behaviour.
I'm finding this conversation very helpful. My many specialists and I are not sure of my diagnosis. I had a mild case of COVID in late 2021, and in 2022 within a time period of six to nine months I two Shingrix vaccines, a flu shot and two Moderna boosters. Bottom line is things went haywire in February 2023 and onward. After a very thorough workup they aren't sure if my symptoms are long-COVID, small fiber polyneuropathy or fibromyalgia. The weird intermittent symptoms are/were SIBO, difficulty breathing (new asthma), chest palpitations, muscle spasms, vertigo, exhaustion, tingling, itching all over, new intolerance to any vitamin (particularly the B vitamins) calcium or iron - I'm sure I am forgetting something. All this to say that I too am super-sensitive to clothing when I sleep. I think it's called allodynia. When it's bad, I too turn my clothes inside out for sleep or wear the least restrictive clothing. The strange part is that I have gotten better for months and find myself to be "normal" and then here we go again - symptoms! I just had a flu shot about a month ago and for weeks I have had some of the old symptoms - muscle spasms, vertigo, blood pressure changes. I even went to the ER thinking maybe I had Guillain Barre from the vaccine but of course, with this invisible disease (whatever it may be) they could find no explanation. Frustrating!
Thank you for your comments. I did not know about the gene mutation as a possible cause. I can remember back to around 1969 of having symptoms. These have gotten worse with age. They started using the sludge in the 1970s.
I am determined to "rule-out" the PFAS and autoimmune items since I have found that QUEST Labs offers tests without a physician order. These can be found on their website. (There are other companies that do this but do not offer the PFAS Test.) It is expensive. The PFAS Test includes 9 different chemicals. You can order and pay for it on line and then they allow you to book an appointment.
Unfortunately, according to an article by the AMA "PFAS Health Effects and CDC Guidelines....."there is no medically approved treatment to remove PFAS from the body". So, if my results are positive, what can I do next. Reduce exposure would be one thing. Perhaps water purification - check to be sure it removes PFAS along with the other bad things. But, what in the world can you do about the food supply?
You can get rid of the rubber cooking tools and containers, non-stick pans, but it is also in stain resistance or water resistant clothing. We are just saturated with it.
So, to stop my panic for now until I get my test results back. To do the tests on Monday.