Let's list all the things that do help

[vickythecat]

Hi,

There are so many posts here from all of us asking others what they do for their pain/exhaustion/fibro fog and all kinds of complaints relating to fibro, that I thought a post listing only the things that do help us individually, might be helpful for us all.

Here is my list;

- Tramadol + paracetamol

- Tizanidine (for sleeping)

- Buscopan (Hyoscine butylbromide) + Pantoprazole for IBS complaints

- Hyoscine butylbromide+medazepam for period cramps & PMS

- Hot packs (for overall pain)

- Cold packs (for plantar fasciitis/feet pain)

- Massaging my shoulders and back with a tennis ball (only on days I can handle the pain. Massaging gives me the feeling that I am killing the poison in there. I therefore also drink lots of water afterwards. It probably is just the 'placebo' effect, but it helps!)

- spending time with animals and in nature. This puts me in a quiet calm mode, also makes me realize life is so much more than fibro.

- finding the most comfortable position/way;
- to sleep; I use 4 different pillows, spread over my whole body
- to sit; my corner on the couch with a leg rest or the 2-person coach with lots of pillow
support
- to type; a large pillow on my lap and my BFF Mac BookAir
- to take a shower/dry oneself afterwards; lots of aromatherapy/nice scented stuff,
different sized soft towels and a hairdryer I use for my whole body, and definitely sitting
down whenever I can.
- to cook; freeze a lot, learn a few very basic soup recipes, use kitchen gadgets a lot, cook
for a few days on good days, accept that there will be 'cereal/sandwich only' days.
- to do grocery shopping; once a month, I have a large online order delivered. Whenever I
can, I go to shops nearby knowing I can only carry max 2 kg/5 pounds on my backpack.
I have a route with sitting spots and I go on quiet hours of the day.
- cleaning the house; taking my time, taking lots of breaks, and often just one room a
day.

Your turn, what helps you?

 

[diamond]

I love this post vicky...

LOL can i do my list in stages...pace and rest

 

[Marvis]

Pacing, pacing, pacing. I've cut so many things out of my life.

Gentle massage and self massage (trigger point)

non-medicinal muscle rubs

heat for muscles; Ice for headache

migraine - ice on head, gum, ice in mouth, numbing creams, over the counter pain relievers, coffee

pain - pretty much nothing medicinal. pain relievers help, but as it also works for migraine, I have to save it for that, or risk overuse. I've tried cannabis. no real luck there, although my clinic was terrible and not very helpful. I'm sure there's better cannabis/methods out there. Just haven't figured it out yet. I'm waiting for it to be legal here in Canada, so I can skip the clinic.

hot bath - except that I overheat easily, so now it's not totally submerged and cool water at the end.

pillows, pillows, pillows and I rotate the one under my head - one will work for awhile, and then it suddenly doesn't

physiotherapy -- but only because I found a magical one that spent up to 15 minutes gently massaging my neck every time I came in. Fabulous man. If I had the money, I'd go there every day. sigh.

Sleep position. Above man told me to be careful how I slept - I tend to go fetal position which curls my head in and shoulder up. I kind of tuck a pillow under my chin to keep my head in a neutral position and brace my arm with the same pillow. I notice when my head curls down in the night because I've shifted, I wake up with a headache

effexor for depression/anxiety. It's an old one, but it's gentle and works for me.

I did a candida diet a few years ago and I have to say I felt better. Whether that was fluke or because it was summer or whatever - I did do better while I maintained it. But it's hard and time consuming. I keep trying to get back to it. But there's always something....My son spent two days making babka. How could I not eat a piece? sigh. Still trying.

Cooking ... I find basic meat and veg the easiest. I cook for a family of 4 picky eaters. I tend to grill meat, cut up carrots and cucumbers and throw another veg in the microwave and serve it with slices of whole grain baguette. I try to cook enough for two nights, so I'm not cooking every day. Plus pizza night and a night where everyone gets there own. For the meat, I make a couple of simple dry spice rubs, brush it with olive oil, and put a generous amount of the rub on. Or just salt and pepper.

Cleaning. I hire it out. Twice a month. I hate it, but it's saving my life. My husband does most of the laundry. My son does the heavy lifting.

 

[Tipnatee N]

Ice bath - the great shock therapy , great for stop extreme burning sensation on skin or fever like that usually escalating to panic ( it stop my panic cold no pun intended)

Hot bath - I love my Dead Sea salt bath do to their high minerals salt content, Baking soda bath for inflammatory do to high acid and help ph balance especially sweating or not sweating problem, and my own recipe of aspirin bath ( used with baking soda ) do to their salicylic acid that help melting my dead skin away that usually accumulate allergies and made it easy to scrub making my skin or hair soft and smooth.

Ice packs - I love keeping them mostly on my tummy cause the fat can protect from chill while keeping my body cool without hurting any other body parts that I'm already in pains with, and from what I've heard it may kill fat cell over time if use often.

Microwaveable grain bags - for moisturing heat compress during my migraine , sinusitis , or jaw pains ( especially when wrapping around my head and covering my ears) . It can also be use cold if you keep them in the freezer very nice cooling and less intense than ice packs.

Lidocaine gel or Novocain spray - I usually bought them online for better strength. Lidocaine gel from online tattoo shop cause it's 5% with no alcohol content and can be safely use even in my nose , ear, and eye lid great for terrible extreme allergies and some Allodynia problem. Novocain spray can be found from online dentist shop, I use for larger area since it a little cheaper but it usually contain alcohol and some sweetener so it can be a bit sticky.

Netopathy essential oil - if I mix eucalyptus oil with peppermint and cloves it kinda feel like icy hot but smell nicer . Then when I mix eucalyptus oil, lemongrass oil , and Benadryl spray or Benadryl cream it can feel tingly numb and good for stopping burning red spot that feels like but stinging. Sometime I use lemon grass oil for bug repellent since bugs bites can cause my skin flare up problem

My Face wash or face mask recipe for all my facial pains - a pinch of baking soda on the my one hand with one aspirin and a few drops of water , let it frizz melted together then mix with a pinch of turmeric powder and dab of tooth paste . Mix them in my hand and then scrub ping my face with it. I usually leave it on for a minute or two. Then wash off.

Supplements - I take K2 , D3, calcium, potassium, probiotic, and once a while magnesium. On the side I eat 2 Brazil nuts per day cause it help me sleep easier while keep my depressant problem at bay.

Cooking - I like marinate my meat in advance and leave them in my fridge for the rest of the week so when I can cook it will be very fast . When it comes to marinating recipes, I like using high electrolytes liquid like pickles liquids or the mixture of apple cider vinegar with adobo and other dry herbs seasoning . Sometime I add turmeric powder especially the chicken. Or the other day I just marinated pork chop with turmeric and coffee with pink salt and sage ( great deep exotic flavor) then pan fry them with vegetable and coconut oil cause coconut oil is a perfect oil for fibro. I even use coconut oil to fried my healthy fry my pre-marinated chicken. Plus so much less grease . Super healthy with anti biotic, antimicrobial , good for stomach in any diet . I cook using lots and lots of vegetable both frozen and fresh to replace the normal carbohydrates. And I like adding gelatin powder to boost my collagen intakes. Great for quick broth, thickening soup ( very velvety texture) or gravy. Mixing with low fat ground meat and seasoning you can give low fat ground meat good fatty like texture without adding extra fat. Oatmale meatloaf and crush mushroom with simple seasoning is super easy and tasty just cook in microwave . I can go on forever taking about food . I'm also fascinating with raw vegan diet just because it's fun.

These are the list of thing I actually do every single day some even twice or more a per day.

As far as meds that I found most helpful without so much bad side effects to me was Lorazepam and Zoloft . Anything else I had a lot of hard time with it being very easy effect by meds side effect and all. i drink sometime to times.

 

[Tipnatee N]

I love this post vicky...

LOL can i do my list in stages...pace and rest

Me too!!:smile: I love it so much , I wish I could write more but I'm afraid it will take up too much space I have to compressed it down to just things that I've found working well that I easily and normally do it daily without even have to think about it. I don't even want to including other stuffs. Cause it won't end just one page.

 

[Lubkos way]

I am a little shocked at all the things you ladies do EVERY DAY,are you kidding!?I got tired just reading it all!For me less is more,and keeping it simple is what I focus on.I try to get to bed earlier than twelve,try to eat foods that are beneficial to good gut bacteria,starve the bad.I love red wine,so keeping it under control especially later in the evenings is important,but it is my guilty pleasure,so if it pleases me it is in!I force myself to keep fit,so that means everyday a mix of yoga and resistance training,about a half hour to forty minutes.I also have to work (I am a handyman and work for myself)which can get very physical,so recovery strategies are important.Long hot showers,a relaxing environment with plants,small trees,an aquarium and I enjoy antiques,art,restoring objects,making custom frames.....I smoke about 5 joints a day,quit cigarettes last January.Meds:3x3mg of hydromorph contin,synthroid hormone for my thyroid and 12.5 mg of amytriptiline for sleep(I used to take 75mg).I think a relaxing environment and trying to stay busy helps,but I do have significant periods where I am useless.So being mindful of limits and knowing yourself is important,and starting small and slowly increasing over time will increase your strength and ability to rebound.

 

[Tipnatee N]

Lubkos way ,

I must do alot cause I completely took my self off all meds . I only kept a few pills arounds for the very last resource, and haven't touch any for over years now. Sure less is more, and for me that list is not that much cause I have them at hands and close by. I used to have a small business of aquatic breeding/selling online started after I was dianosed with fibro and lost my main income jobs. So aquariums hobby/business was also used to take all my times away. But I lost it all after I lost my home and gone homeless. I can't smoke any joint cause my body don't do well with it since I was little ( do to so called minor childhood trauma lol). Plus I'm the type that have all the bad side effect from most drugs. So maybe I could do without some if I was already crashing or just out cold.

 

[Marvis]

Lubkos way, I've tried pot through prescription. I used oil, which did little, although I think maybe I was supposed to take it daily (at $200 for a little bottle, that wasn't likely to happen). Smoking just made me feel dizzy. Next is to try vaping, I suppose. The cannabis clinic route is less than helpful. You're given one choice to try. I was given a really brief demo of how to use a vape, but basicaly told to go to a head shop to get a proper demo. I'm waiting for legallization (I'm in Canada) hoping the product will be better. I'm still hopeful it will help.

 

[Jeanne]

So far all treatments and medications have done very little for my pain. I was on highest dose of tramadol which didn't work for me. I am currently taking Lyrica, Cymbalta, and Norco. I recently ordered some topical roll on and spray for pain. The Elmore Oil roll on does seem to bring down my pain level in my arms and shoulders temporarily. I have recently cut my work schedule down from 40 hours to 24. I work one day then I am in pain for the next 1-2 days. Recently I have become very agitated and anxious. I am so itchy. I have 2 weeks until I see my rheumatologist.

 

[HeebieJeebie]

The Wong Advice

Good day to you all. First time writer, so please forgive my forum etiquette - or lack of.

About four years ago I suffered a broken leg which led to some pretty severe Allodynia/Fibromyalgia and bordered on what I thought was full-blown stage 1-2 CRPS (Chronic Regional Pain Syndrome. My apologies. I try to avoid the use of initialism without explanation).
Anyway I managed to cure it with a couple of things. I'm not sure this will help anyone, but I'd like to share so people aren't shoveling mountains of cash into big pharma's tree mulcher without needing to.

So, let's get started...

I went to see a few doctors about this and after a fair amount of research came to what most here probably already know: Fibromyalgia, Allodynia and CRPS are very much "umbrella" terms that can cover the others too. As such, they also run the risk of misdiagnoses and the wrong treatment. But I'll get back to this in a moment.

For me, the main problem was the sensitive skin. I felt like I had sunburn and it was almost impossible to wear clothing. Because of this, I couldn't sleep, my body was tired and couldn't heal itself so everything started to get worse. My senses were dull, I was in a zombie-like state all the time, and the area of sensitivity just kept growing - first from my legs to my stomach and then to my back. One condition stacked and made others worse, the lack of sleep brought on Restless Leg Syndrome, the RLS brought on chronic indigestion and foot spasms - the list goes one. A literal Uroboran snake of illness.

So, as a rapid solution to break the chain, I used surgical tape. You know that wide pink-colored material tape they use to fix bandages together etc?. Well, the super-sized wide stuff was quite easy to wrap the sensitive areas up and provide a shield from my clothing. Hey presto! I could sleep again - which was the most important part. As a side note, this also worked for friends of mine who suffered from gout.
The point is: the mounting use of medication, supplements and diverse therapies (spinal taps to acupuncture) was all bul***** and did nothing to solve this for me. A simple trip to the supermarket fixed it.
Cost to alleviate the pain: A $5 roll of tape.

Special note: If you do this, you might want to shave the skin you apply the tape to first. I didn't, and the result when trying to change the tape was, shall we say, YouTube-worthy....


My second point is on diagnoses. In truth, despite all the reading I had done on my condition, I didn't know what I had. Fribromyalgia, CRPS and its related counterparts are difficult to treat because their root-causes are so "elastic" in description. It can trigger from anything: stress, hormonal imbalance, poor diet to - in my case - a traumatic injury.
How do you define a treatment based on something so open in cause and classification?
Following the CRPS theory, I called one of the top specialists in the field (A Danish Professor Van Hesselink - I think his name was). I was told by him that my symptoms were a solid match to CRPS, so was recommended a course of Pea Pure with (3%) Ketamine cream. The cost was expensive to be honest and, while the Ketamine cream did help to alleviate the sensitive skin somewhat, the symptoms persisted. I also had to bear the embarrassment of smelling like hospital creme-fraiche all day - which did nothing for my standing in the Gentlemans' club before cigars were distributed.
Cost to consult, pay for differing painkillers, other treatments and basically find no solution to this mess so far: $1,500-$1,750.
Loss of reputation in Gentlemans' club, thanks to having to wear shorts and flip flops while smoking the aforementioned cigars: Irrepairable


I had tried pretty much everything at this point - from ketamine, cortisone, spinal taps to hyperbaric chamber treatment, and nothing had worked. I was on the verge of doing something drastic. And then I discovered my cure...

...water.

Yes, thousands of dollars later, I found that the actual solution to my problem was literally twenty feet away from me. It was bizarre though. I didn't feel or look dehydrated, my skin looked fine and I had no thirst whatsoever. I drank a regular amount of coffee and fluids (so I thought) but even after this, the symptoms only subsided when I drank more water.
I started drinking Isotonic drinks (diet, to avoid the sugar) as they allowed for more rapid absorbtion into the body. The results were pretty quick, but after the space of a couple of months, the problems were almost gone.
I realized my Allodynia had been brought on by my time spent in hospital when I broke my leg. My bed was directly in the path of an air conditioner - and these things can be terrible for your health. I'm sure many can appreciate the significance of dehydration around air con units. Notice how your eyes feel after a couple of hours, for instance.
Dehydration can take years to fix, and stresses the body out in all kinds of ways.
Cost to fix my condition completely: $5-10 a week.

Now, please forgive the entry into this forum as something that is not exactly Fibromyalgia. This is primarily because the consultants I met had also thought I had some form of this - reiterating my point on misdiagnoses. The terrible fatigue, the zombie-like state of mind, the pain in my skin and muscles combined with a vibrating feeling in my foot - told my three consultants one thing: this was Fibromyalgia. My own self-diagnosis on "Wiki-pedia-trition" was just as bad: This was CRPS. In fact, everyone was wrong. It was a combination of ailments which had spiraled out of control from one simple thing: Lack of water. Dehydration had led to allodynia, which led to lack of sleep, which led to nerve problems...etc etc.

Ironically, the only good advice I ever received wasn't from a doctor but from a fortune cookie in a neighboring Wong's Noodle House. "The solution is right in front of you" - words to live by.

Never has Wong been so right.


To all who suffer with this, you have my heart-felt sympathy. I hope that this small experience may help you break this ball and chain permanently. Test the simple things first.

 

[vickythecat]

Re: The Wong Advice

Test the simple things first.

I completely agree with this. Often the (almost) solution to our pain/fatigue problems can work real well, just the basic things - like a healthy diet, water (I drink a lot of it as well), doing basic calming exercises, trying to change one's mindset, acceptance, pacing etc.

I also suffered from allodynia, I did not even know what it was, never went to a doctor for it, but I also solved with a simple trick - instead of tape, I wrapped my lower legs where the pain was unbearable with simple bandage. The white long bandage you'd use for a sprained ankle/wrist. It would definitely help with the pain and let me sleep at night.

Sadly, many of us do also have to try many medications and take them just to make things bearable. This differs from person to person. What did not work for me, might work real well for you. Fibro is different for everyone....the mystery of it all.

 

[Tipnatee N]

Re: The Wong Advice

HeebieJeebie , I have very bad Allodynia too in all 3 sub categories, along with Paresthesia and hyperesthesia ( all the fibro skin holocaust) I only can tape my self with menthol effect pain patches, or lidocaine patches . Any thing stuck on me without any numbing or pain relief effect will make me feel like being stung by bees or a bunch of fire ants. My bf have to get a twice consent for a permission to touch me. Or I'll scream my head of do to sensation like electric shocking effects and even more intense when getting a surprise touch. It's very easily to spook me now than ever .

Yes the sunburn like too, it started like sunburn sensation an ended up like infernal cremation! :evil: . I have to use ice bath or cold shower even in the winter if the burning sensation last for too long. And yes cold shower during winter hurt like hell but still less hellish than the fibro hell.

OH Wow I bought PEApure not so long ago actually! :razz: , (never expect to hear about it here) . Unfortunately at that time my stomach wasn't doing well do to another possible overdose of magnesium while also taking peapure . Unknowingly which at fault so I packed it away somewhere not knowing if it was working for me or not . Maybe I'll try to used it again without any other supplement interference to see if it will work now. Thank you for reminding me.

As far as water I have to be careful do to my potassium deficiency , my body gets blow up like a water ballon ( unable to release body fluids) I can be skinny in morning and look literally like a 5 months old pregnant woman at the end of the day, feeling exactly like one too ( no kidding I swear) . Which by far it's my most annoying Pains with lots of bladder problems and tons of back aches pains and shooting cramps . Unable to bend forward I felt like a broken Humpty Dumpty.

 

[HeebieJeebie]

Good day to you all!

To the most honorable Vicky the Cat:
One of the reasons I used tape instead of the bandages, was because even at night there was still a certain friction which was excruciating. Affixing the tape "fastened" it to the skin so effectively provided a second layer of skin which dulled the sensation completely. I also found that taking it off was made much easier by just doing it in the bath - which dissolved the adhesion by about 95%.

To the most honorable Tipnatee N:
You have my deepest sympathies with this - as it's a real stopping-block to any type of recovery. In my experience, Every time I have had Allodynia (three times in fact) it has been at the result of something else - ie: it's a side effect. Some very interesting words of advice I read when researching how to cure it were these: (to paraphrase) "You body is a bit like a typewriter. It's complex in construction, but as a device, it's pretty simple to use. When it's sick, it wants to communicate, but the problem is: it only has about seven keys to do it" .


My mistakes in interpretation certainly made my problem worse - by thinking that if I ate mountains of supplements and pills, I'd get better - when really the solution was right in front of me. This also wasn't helped by the pharma shills who lurk in popular forums and advice pages "recommending" medication that has just been released.
I am convinced that Allodynia has something to do with a loss of hydration in the body (or something similar - perhaps collagen) - which causes the barrier between the subcutaneous layer of the skin and the nerve layer to diminish by just a couple of microns. From my own experience, this has been the case twice in which I have experienced it. The other time was caused by out-of-date insulin I was using (I'm a diabetic) - and although I might put that down to dodgy medication, my body was working more to heal itself from poison and using resources it really shouldn't use to cope with it (which could have been the same thing).

This is all speculation, I know, but when I look at it, Allodynia has appeared a) because my body is trying to fix something with something else - a bit like robbing Peter to pay Paul; or b) because my body is devoid of something and then robbing Peter to pay Paul.

To me, the problem branched from here. Allodynia brought a lack of sleep and with that, a whole plethora of other problems. For me, finding the source was the key, which could be anything from a food intolerance to the environment in which you live (incineration sites are notorious for causing all types of this crap).

@ Miss Tipnatee. One thing you might want to look into is the Ketamine cream for this condition. There is an institute in Denmark which is currently running treatments in it's use to treat Chronic Regional Pain Syndrome. I don't know about the legality of this in all states, but I had trouble in Japan and the UK when they removed the use of it from the legal medicines register - basically screwing over 1.2% of the population who are afflicted with this nightmare.
As I remember though, the clinic does a full treatment and most who go there end up pretty good when they come out. Financially, this is quite unrealistic unless you can actually pay for a trip to Denmark and stay in a hotel for a month.
It's important to remember that the Ketamine cream was only used by Prof Hesselink with the intention of allowing the body to be able to rest and let the PEApure do its thing. Sleep is an important part of this process too.
More realistically, people I know have used the PEApure and done it manually (often upping the ketamine consistency to 5%) to get a better result - but this is up to choice).

Of all the conditions my two year nightmare brought on, Allodynia was the worst. When a good night's sleep, or just sitting down and reading a book become far-off dreams, it can feel like all hope is lost.
Please take heart though. All is not and things do get better. May whatever luck that helped me stumble onto my cure find you to.

 

[Tipnatee N]

Thank you HeebieJeebie

Wow I've never been calling "the hornerable" before . I laugh for a long time cause I kept imagining my face in big white curly wig with wooden hammer. :mrgreen:

According to many online video posting doctors out there you can find them on youtube and such, many of them seem to believes that any kinds of Inflamation especially coming from skin irritation or even body might have caused by the acid build up in our systems. So my trusted fix has been baking soda bath ( with menthol and numbing solution) . It seems to claim them down even just a bit . Enough for me to not screaming my head off more than once.

But all the pains in my skin and body also gets intesify by my SPD ( sensory precessing dysfuction) many fibro suffer have it without knowing along with their fibro and it's very hard to tells apart do to their similarlity . But clearly if you have SPD then you might experencing wrong sense perceptions such as super sensitive hearing or occasionally def with out warning , all tastes buds are so far off so wrong or no tastes, touch sensation are out of wack and this is where Allodynia / Hyperesthesia / Paresthesia comes to play together. :-(

 

[HeebieJeebie]

My apologies, lady Tipnatee N... the hallmarks of a British youth.

I completely agree with you, acidic blood is another hugely suspect one. Gout has been historically treated with blueberry juice (upping the alkalinity in the bloodstream), but a friend of mine noticed a huge difference with taking baking soda in water - almost clearing it all up. Have you actually tried it in drinks (regularly) to up your body's alkalinity?
If you're super sensitive - and simply cannot deal with the regular processed baking soda - there is an American natural type which is not chemically processed. This stuff is like apple cider vinegar with its uses and benefits.