New to the forum?

Sign Up Here!

Already a member?
Please login below.

Forgot your password?
Need Help?  
My LONG history, question/poll about meds - personal exp's
15 Replies
sachiaiko - March 4

Hello there folks, My name is Sachi - Its been a while since i have tottered about on forums for FMS. But it seems that i've hit a bit of a wall. I need your help - if you can give it.

Since this is a LONG message, i'll tell you what i want at the top in case you wanna skip my history. What i am looking for is the following.

1. Any research indicating that the AMA has it WRONG. Narcotics ARE in fact successful for many people with FMS. (point of fact, in over 17 years having met and spoken to thousands of fellow FMS patients i have never, not once, met one who did not get pain relief by narcotics. So where is the AMA getting this hogwash?)

2. Personal experiences - i would love to know what has worked for you guys. What DOESNT work for you guys, what has been successful for you guys.

2.a. I'd also love to know if the drugs designated for FMS treatment have worked for you guys. IE: Lyrica, cymbalta etc. Because they didnt work AT ALL for me. Not even a little. Plus they made me sick, knocked me silly and caused me to gain weight. Side effects can be withstood if the drug HELPS, but if the relief you get is nil-to minimal - whats the point?

3. Any new research regarding FMS, links, etc. Something that doctors will respect is preferable.

Thanks, in advance - Feel free to read my quickly written personal account and experiences bellow. I just find with long posts, its always good to make what you are requesting CLEAR at the begining in case some one doesnt wanna read that much - makes the chance they'll ignore you less. Be well!

I was diagnosed with FMS after years of agony, 2 casts and a splint on my arm because doctors didnt know why i was in so much pain, and thousands of sleepless nights when i was just 14 years old. I'm now 31.

Since my diagnosis i was put on just about every drug that they could think of. I tried the whole HOST of NSAIDS, and The Amnatryptaline Family of drugs within my first couple of years. 600mgs of IBprofin every 4 hours destroys a 14 year olds stomach - i can attest to that!

After unbearable pain for years, i started taking Darvocet. And Gabapentine, though the gabapentine didnt help with the pain it DID keep me asleep, restful sleep. So one pill found successful, albeit NOT for the reason it was perscribed. WE counted it a win regardless.

Problem was, while the darvocet helped a bit, it wasnt enough. I couldn't go to school, i couldn't run and play like the other children. I was dsabled... and imagine being 15 years old and told your SOL. You'll always be in this much pain, nothing and no one can help you. You have to learn to cope in a world that doesnt even understand wat FMS IS! Cause this was over 15 years ago. Before i even got seen by a rhuematologist, i was designated as "Pain is in her head, not real" cause thats what they thought of fms at that time. We know better now.

So, in the effort to find more effective drugs, over the years found me trying Percocet, then Oxycontin with darvocet as breakthru pain relief. Then a doctor went through a kaniption fit and he decided he wanted me on a fentynel patch. LIVING hell. Week of living, breathing hell. After a week of screaming agony on my couch, crying and unable to move or even really ask for what i needed. My dear mother, thank god, called the doctor and demanded he get me on something else right away. So Fentynel patches did not work for me. He kept trying to increase the dose, but it just didnt work for me.

They raised the doses, gave me trigger point injections, put me on everything they could think of. Finally, i got somewhat stable on a dose of Oxycontin with a breakthru pain med. Until i lost my health care insurence. In an effort to help me, my pain specialist put me on Methadone, because it was so much cheaper, but also cause he thought it would help.

and it did, help i mean, but it also had an unfortunate habit of knocking me six ways from sunday. With percocet as my breakthru with the methadone, i stayed on this for a bout 5 years. and i was on a rather normal dose. NOT dangerous levels at all.

Until i got very very ill. Now, here i'll mention that for years, since i was a child, i have been very sick. For me its hard to tell what is FMS and what is this undiagnosed condition. because when you hurt all the time its hard to tell if something new, and even worse, is happening in your body. But there is no doubt in my mind something ELSE is happening in my body. Something no doctor will bother to look for because of my FMS and my weightloss surgery. Everything wrong with me automatically falls within those two catagories. Despite the fact there are so many other signs of problems.

I began to get very sick, very weak, and couldnt make it up stairs. I fell outside, and couldnt get back up. This at such a young age. I ended up falling into a coma, where i was expected to die. I did not, clearly, but i have raging infections, nothing seemed to contain them, none of the medicines they gave me helped. the only thing successful was Vancomyacin *but i tested NEGATIVE for MRSA

While i was in the coma the rapid detoxed me off methadone. When i woke, i had over 100 pounds of extra water weight on me. I had to relearn to walk etc. Here is where it gets a bit tricky....

To manage my pain, everyone agreed that Methdone wasnt the best for me since my quality of life was so... well, unconcious. We tried MScontin. But due to my weightloss surgery we found soon that the pills didnt disolve properly, and only the LIQUID worked. But the liquid is designed for quick acting, breakthry type relief. and i have constain pain. Over the course of about 8-12 months we raised my dose to a staggeringly high level....

BUT.... i had a real quality of life! oh, i'm still disabled, frightfully so, but i could make myself lunch. I didnt hide in bed every morning tll the last possible second to get up and go to the bathroom due to pain. (its never a good sign when you have an accident in bed beause your pain caused you to wait too long before you could physically forced yourself to get up. Thats not something most doctors can even pretend to understand.)

So, we raised my morphine use slowly, methodically, until finally i had the BEST quality of life i every have had. Its not like a normal person, i dont remember what it feels like to be less then a 4 on the pain scale. But i live usually between a 4-6 on my good days. and when you were used to 8 and 9's, tthats something to cheer about.

But my doctors stopped searching for that sneaky illness, and even tho i was doing well, i started to get really sick again. Again, nauseaous, again, i got weak, again, i couldnt stand up from my couch, and again, i went into a life threatening coma. One they said, i would SURELY die in.

But again, i survived.

We are two years out from the second coma, and again the docs are forgetting how severe and near death i was. They explain it away by saying it is related to the weightloss surgery, or the meds i've been on. But i've had these symptoms since before i was even diagnosed with FMS!! So i know its not that.

I havent even mentioned the fact i also had ovarian cancer, and amazinly survived it. But the meds i'm on, the morphine, my GODSEND, its all the stupid doctors will look at!

One thing they repeatedly try to tell me is that FMS patience do NOT find relief with any types of narcotics. Its funny to me because its the ONLY thing thats worked for me - none of the so called "FMS Drugs" like cymbalta or lyrica did anything for me. The only relief i get is from the opiods. And i HATE being drugged. I would love to be off everything, hand to god.

The funny thing is - i've actually never met or spoken to another FMS patient to said narcotics didnt help their pain. Not once. and i've been diagnosed for over 15 years and spoken to THOUSANDS of other patients.

This new AMA report saying FMS patients shouldnt be put on narcotics is a farse. But how do you show the doctors this? How? The only way is to point them to recognized studies that conflict with the AMA's information.

I'm looking for research, personal experiences, ANYTHING That can help me. My doctors are trying to force me down, which is putting me in so much pain. I have one doctor who supports me in not being forced. But she also sorta looks down her nose at my choice. I've gone through this a million times, every new doctor wants to try everything again - never mind i've been through everything with each past doctor. I dont wanna try lyrica for the 5th time - would you? If you knew it didnt work and had tried it multiple times - would you want to go through it again? :sighs:

Personal experiences - what you have, what works, what doesnt - that would be GRAND. But also, any links to respected research regarding FMS and pain management. Also long term affects on narcotic use for pain management.

What they dont seem to grasp, is that i understand the trade off. If my choice is to live for 20 years less, but have a life thats worth living - hell, i'm good with that.

I know some FMS patients don't experience the type of pain i do. Some have mild cases. That isnt the way it is for me. I am in literal screaming pain, pain so severe that to get brief seconds of releif i'd punch my legs for the instant of numbness the shock to my nerves created. Pain so severe i couldnt sleep, so severe i'd be screaming and neighbors would come to see if i was dying.

Going back to that isnt an option. I need them to grasp this - unfortunately, this new AMA report, which literally makes zero sense to me, has a GRAVE impact on the doctors.... and all the while i have some sneaky infection that hides in my system and pops up every few years to try and put me in comas! and all the doctors wanna talk about is my morphine use. It doesnt make any sense! Its laughable, if it wasnt so sad. and frightening.

So, any help folks? Any research info? Anyone agree that narcotics didnt help them? Anyone have personal experience that might help me?

The above story is a VERY short and condensed version of my experiences, and i'm sure i forgot at least half of what happened, and what i tried. But just imagine everything i'd have been through and tried to be put on 80mgs of liquid morphine 6 times a day. (with less side effects then with anything else i've taken.)

PS, i'm in washington state. Thought to be one of the worst states hands down for chronic pain management.



Fibro2 - September 10

I was in bed for months. Total exhaustion & pains. Some days I couldn’t even get up to feed myself. Or if I forced myself to get up, I couldn’t prepare the meal, cause lifting my arms to reach stuff was painful.

First thing I tried was detox - for couple weeks using detox capsules. Then Fresh Squeezed Organic Vegetable Juice (+ Green Apple) - FASTING, together with colonics. I did it for about a week, twice that month. I felt so much better. Had more energy, and no sharp pains since then. I started not to feel good - 2 weeks after last fast. I couldn’t imagine loosing more wait, and fasting every other week.

One night when I was in pain, and couldn’t sleep because of that, and didn’t have any sleeping pills, I remembered, that NyQuil helps with sleep, so I took it. At my surprise, I felt great the whole next day, had great energy & no pains. When I took it another time at night, I had the same result the next day. So one day I was thinking, why am I not taking NyQuil every night, and feel great every day? I asked a pharmacist, if it’s OK to take it long term, he said it’s fine, but he recommended me similar thing without cough suppressant: Tylenol - PM, which works about the same. By the way, regular Tylenol didn’t work for my pains, even in big doses, like 3x a day 4 tablets. But Tylenol-PM works. Of course take it at night, not during the day, cause you would be tired part of the day.

With NyQuil - you have to find the right dose for you. For me ½ wasn’t enough, ¾ works.

Also I avoid physical work (even small housework) & stretching, because then I am in more pains. It took me long time to figure it out!

My next step is to try 2 therapies recommended for FM:
Intra-Venous Vitamin Therapy & Hyperbaric Oxygen Chamber Therapy.

Does anybody have any experience with any of those 2 therapies?


conniehurts - September 16

Oh Sachi I so understand! I have had fibro for many years tho wasn't diagnosed until about 10 yrs ago. Sadly the dr that diagnosed me believed that ibuprofen or other OTC nsaids were appropriate treament. I too tore up my stomach with huge doses of ibuprofen going from 200 pounds to 114 pounds in 6 months. I looked like a refugee and felt like one too! I have tried the whole gamut of drugs but refuse trigger point injections or anything put directly into my spine. I have enough pain in my life without adding to it knowingly. I have also tried physical therapy, massage, herbs and chiropractic. For me the best relief has been Fentynol (125 mcg changed every 48 hours) with 4 mg Dilaudid for breakthrough pain up to 1 every 3 hours but usually don't take it all the time. Methadone works good on the pain but doesn't give me any quality of life because I am basically out of it all the time. The only thing that works at all are opiods. The bad thing is that because I am on opiods if I get any "extra" pain like a broken bone, some headaches or some other pain the drugs that I take on a daily basis don't work. Sometimes extra strength Excedrin works sometimes it take something along the line of Percocet but I can rarely get it because as they tell me "you cant possibly be in that much pain with all the drugs you are already on" I often want to take a pair of pliers with me to the dr and apply them to a sensitive area of their body and say "you aren't in pain because I cant feel it". I had one dr who was wonderful that said "I cannot feel your pain and therefore must go by what you say to treat you". He also said that the only problem with my being on opiods is if I cant get them, which is a fear I live with daily because that dr is no longer in my area and with the new drug laws and new medical "treatment" that we are being forced into by our government when am I gonna be forced to detox cold turkey? That already happened to me once and I don't know that I can live thru it again!! I still live with a pain scale of 4-5 instead of 9-10 but its the best I have been in years! My journey began in my early teens when I started my periods. I would be in such pain that all I could do was curl up and cry. It took 15 yrs, 2 major abdominal surgeries and several minor abdominal surgeries and MANY drs to get a diagnosis of Endometriosis and the dr that finally did my hysterectomy asked me how I lived with what must have been excruciating pain for so long. How did I live thru it? Did I have a choice? I just suffered. I began getting blinding migraines that would last for weeks at a time in my teens. Then the muscle pain began but was for the most part something I could live with for several years but it got increasingly bad until I was totally bed bound. I had to have help to get out of bed to go to the bathroom. Even with the pain meds I take now my shoulders are in knots all the time (need muscle relaxers but unable to get them) and my life is very limited in order for the meds to keep my pain at a level I can cope with. I still have issues that are not being addressed by the medical community because all they can do is look at my meds and make assumptions from there. My husband does EVERYTHING and according to him my only job is to love him, to cuddle if and when I can and when I am able to ride my horse. I can hear you saying "What is she doing riding a horse in that much pain?" Believe it or not if I can push myself up onto his back it actually helps! The movement of the horse does 100 times more good than physical therapy! It is my physical and emotional therapy! We aren't certain of what will happen in the future with my medical care especially in being able to get my fentynol which without insurance costs over $2,000 a month! Right now we have wonderful insurance but we want to move out of Alaska because with one of my diagnosed problems being Reynauds living in this climate is terribly hard especially since we are getting older, we heat with wood and have no running water. We have been loking at moving to Washington state but from what I am reading on this forum I don't know that it would be the right place to be in order to continue getting halfway reasonable treatment for my pain issues. I don't know how to find what state would be the best for all thing including pain treatment, job, insurance, cooperative drs, most comfortable weather etc. I am afraid I don't have any research to help you with other than my own experiences. Sadly I find that all too often I am fighting for my right to pain treatment that works amongst even people who live in chronic pain but fear the safest and best treatment which are opiates. Whatever works for each person is what treatment we should get. A life with the least pain and the fewest side effects is all I ask! I have been to drs who have put things in my records such as "she wasn't dressed appropriately" which I still wonder about since I was wearing a mid calf length dress and nice shoes. That is one of the list of like 20 things that drs look for when deciding if we are "drug seekers". As pain patients we automatically fall into most of the things listed that drs look at for drug seekers *sigh*
Gentle hugs to all. Peace Connie


MarymPed - September 16

I may be out of line here, but if you live in WA state, can you get medical marijuana? I have a friend in OR who broke her back twice and has a scrip for it. It is one of the things that helps.


conniehurts - September 17

MarymPed I am not in Washington I am in Alaska. I believe that medical marijuana is legal in Washington state but not sure. You would have to check the laws. I need to move to a more temperate climate but reading here it doesn't look as if my first choice of Washington state is going to be a good place for me because of the pain meds I am on :-( I need to have a dr who understands pain and its treatment. Most dr have very little training in the use of pain meds they are just told they are bad and believe it *sigh* Gentle hugs and Peace Connie


axxie - November 4

Yes Opiates are the best, I did not do well on the fentanyl patch, but Ralivia another opiate works like magic for me. Best state for the kind of medical relief you need would be California? Ralivia is an extended release of tramadol, to me it works. Fentanyl the side effect of hypoventilation can be serious enough to cause brain damage or death. But is the drug of choice for chronic pain. These doctors just don't want to prescribe them because they know much about them.


conniehurts - November 4

I have not heard of /ralivia but will definitely do some research on it! Fentanyl has been a godsend for me tho I find that after being on it for years its not working as well as it did. I have a friend who was on over 800mcgs for a while with his cancer therapy so I don't consider 125 mcg to be much at all. Once in a while I can get a Percocet for breakthrough when my normal breakthrough meds (dilaudid) doesn't cut it. I would rather have brain damage than the pain I was in for years! Does the Ralivia cost as much as the Fentanyl? When we move I probably wont have insurance for a while (obamanationcare isn't something I intend to get near till I am forced to!!)


conniehurts - November 4

Axxie ijust reread the last part of your post and realized what the ralivia is and sadly wont do a thing for me. I could eat tramadol like candy and not get any relief *sigh* I had hope for a moment that I could find a long acting drug that was less expensive that works without bad side effects.


axxie - November 4

Connie, Ralivia is not in the States, insurance company feel that the tramadol taken every few hours is the same. I was able to find out by my pain management dr, that its not one patch or tramadol or ralivia will work, it's by mixing one drug and another that you get the best pain relief. I remember while being a student and studying the compounds that yield the best results, same with cancer patients. The one thing that you do have to remember is never mix a patch of narcotics with another narcotic, that is dangerous, it affects your breathing and will also slow down your whole body and they the problems arise, that you may or not experience and will give you other condition. Unless you can get a dr that has studied pain medication for cancer patient who unfortunately are dying, none of us will get the right combo. The best is document what you take with your patch and see what seem to work. Then I would check the side affects of each and look up if both work together. I remember being on a very low dose of fentanyl and taking with a certain drug for sleeping made me go crazy like looney and had bad anxiety attacks, but the dr did not see why it would. Remember not all drugs mix together, and not one of anything will do for the pain management. So now if becomes a cocktail of drugs that we need to take and we get into trouble, because of the side affects and then we develop other illness attribute to the cocktail. It's very important to keep a journal of drugs used, that way you can do your own research on the internet and then go see your gp. Normal gp are not educated on drugs they are merely get information from the pharmaceutical reps who see the gp with their new miracle drugs that is suppose to help with this or that.

As for Lyrica, cymbalta , tried both, and they don't work period. Cymbalta caused me to go into a depression and it took me 6 months to weened myself off it, and my doctor did know how. Again I had to go through the internet and read everything about it. It's a bad drug, I remember a decade ago, Cymbalta was the new drug on Fibro, again that miracle drug from the manufacturer who praised it and no doctor and no one had made any testing. Now Cymbalta television add are about depressed people who may feel physical system. Another story from the drug company, I don't think many of us weren't offered, Cymbalta, Lyraca or percoset or tramadol as the best to treat FMS, and we the sufferer no one is listening to us to understand what we feel or how best to treat us.

Drs. are afraid in the most part to treat us with opioids because they fear of the unknown. Sadly most drs are still treating us like we just want a fix because they think we are drug uses.

If you resort into smoking the weed and it helps you go for it, that's what I say but to be legal your State must support it, or at least have a dr to give you a script that you are under medical care and that is what was subscribe. The states all think that waky tabaky are for drug users and are for leisure, not so, it's been documents for centuries that certain plants benefit people of their medical problems. We in the new century all think that if you carry drugs on you, is because you are a pill pusher and sadly we are not,.


conniehurts - November 5

Axxie over the years I have learned what works and what doesn't, too bad my dr cant "get it". Pot is legal for personal use in Alaska but you have to grow your own since even with a script you cannot buy, sell or transport it. Makes sense to someone I guess but not to me. In fact with script you are allowed less than without one! lol I keep a very small amount for those rare times when NOTHING else will help. If I get the wrong kind (their are many varieties) all it does is give me a headache but the right stuff when used sparingly will help me thru those horrible times when I would gladly take anything that might help! Lyrica had such terrible side effects (affected my vision and still does after many years and made my hips feel like I had a hot iron rod in them), and Cymbalta had bad side effects too and neither helped with pain so I totally refuse to take them again EVER for any reason! The biggest problem with most drs is that besides not knowing the drugs they write scripts for they are covering their butts with both hands. People like my daughter are the cause of that. She hasn't lived here for 6 yrs yet still send all her bills here and in the last couple weeks I have gotten bills for her from 6 different hospitals :-(. I did the best I could raising her right but sadly she is one messed up woman. I don't even talk to her anymore :-( We have 1 hospital and 3 same day cliics in our town. I go to one dr and one hospital as well as one pharmacy so they should be able to figure out that I am not abusing drugs! I have tried keeping a diary of pain and what I took for it but the dr wont even take the time to read it! Her office visits are limited to 10 minutes or less so she really has no clue what or how I am doing. I just have to see her every 3 months for refills so she can bill the insurance but she wont take the time to talk to me except to say she is uncomfortable writing my scripts. I worry she will just quit writing them and I will be back in bed losing my mind from pain and withdrawels. It seems like every new miracle drug they come out with have so many possible severe side effects that I don't feel they are safe for human consumption! I wish I could figure out what is going on with my hand but if I ever do I am certain it will be many years from now! It took them 15 yrs and 4 surgeries to diagnose severe endometriosis that I had pre-puberty and the dr that finally diagnosed it was amazed I could stand the pain. Duhh what choice did I have. Stand the pain or die:-( Gentle hugs and Peace Connie


axxie - November 6

Why do we have incompetent doctors, why I keep asking myself. They are everywhere, they don't want to take the time to understand, they don't want to know because they feel they have superior knowledge. I fired one, got mad at another and told him off and wrote to the Doctor's Association. Don't know if it made a difference, because I refused to go see this incompetent jack a**. Got myself another, and I am not sure if I will keep her...... As for all these drugs they can all take them and see how we feel. If only I can just make these doctors feel what we feel for a mere day, that is all I want (for Christmas)LOL. Maybe then they would get it. Until you leave the very cold climate I don't think you will get any better. My hubby is retiring after 39 years in the military, and he promised me this winter we are leaving for warmer climate until April. I started my mental note of what clothes I wanted to bring and then lost my mental note (LOL). Today I am tired, I haven't been sleeping well in the last few weeks, months, years, I am just tired. I will try to coach my husband to go visit a spa, where I can just stay in those wonderful warm water. When I get out, I am like jello, pain almost all gone. Stay warm my dear .


conniehurts - November 7

Dang my reply just disappeared into cyberland! Hope this doesn't make a double post.
I have dreamed of applying pliers to a very sensitive area on a dr who wont listen and then look at them like they are nut cases and say "I don't feel a thing it must be in your head!" Pain is so individual and sadly too many pain patients have been brainwashed to believe that opiates are evil even when treating long term pain issues that drs are strengthened in their very incorrect beliefs. The FDA doesn't help any either cuz they cant make as much $$ on people using old standard drugs than they can in making new ones that are more dangerous!


axxie - November 7

Can I have some plyers, I'd love for some doctors I have visited to feel our pain, I guess it's called revenge from my evil twin. lol

Anyway, I say go for what you need to make things better, reducing one's stress makes it easier for us FMS. Then there's the diet, I found that no specific diet works for me, I still take a vitamin supplement, and I go out everyday, rain or shine or snow. Daylight is needed and it feels good, then drugs when I have to have them. I changed my bed for a foam mattress that has helped.

What do you do to help yourself with the pain.


conniehurts - November 8

Love your evil twin! We must be related lol.
Because of whatever is going on with my stomach which of course they cant figure out my diet sucks. There are very few things I can eat and most of them wouldn't be considered to be healthy. Mostly I live on Mtn Dew and frozen chicken biscuits. Sometimes I can eat veggies and rarely a bite or two of red meat (I grew up in the Midwest so red meat and potatoes were staples along with always eating dessert usually chocolate which I can non longer eat :-( )I don't get outside often because my hubby fears my falling and not being able to get up especially in the winter which is 9 months of the year. Other than pain meds I avoid doing anything that involves bending and stretching (I know I should do those things but I don't like being in extra pain for days at a times) but the best thing that helps me is time with my horse. Sadly I need help for that so only got to ride 4 times this summer. Riding at a walk moves your body in the same way walking does without the stress on my body. Even just going out to the barn and hugging my horse will give me relief. Hugging my dog helps but not as much and of course hugging my hubby is amazing! I take vitamin D and have been trying to find a vitamin B complex that doesn't make me sick but so far no luck there. I have a pillow top mattress and often when hubby isn't home I sit in his easy chair with a special pillow that keeps my tailbone from pressure and put a thick lambs wool hide behind my back and putting pressure on the back of my neck. on rare occasions I go to the mineral hot spring but it is 80 miles one way on very bumpy roads and costs about $20 each to get in but lordy does it feel good while I am in it, especially when its about 20 below out! I haven't been there since the reynauds has gotten bad so don't know if it would work now or not. Since I burned my hand last winter (fell with fist in a bucket of hot coals!) I cannot use my electric gloves on high on that hand so probably the hot springs would not be a good idea. Mostly I just avoid anything that hurts. If, or should I say when, we move back to the lower 48 where the weather is better I will get out more and spend more time with my horses I expect to feel better at least emotionally.


axxie - November 15

I feel for you my evil twin!!! Hot spring almost total relief, sorry about your Reynaud's, actually met a woman at the library who has a bad case of it, and she started taking Krill supplement, she takes 1600mg a day with a meal, and she swears by it, that it help her. I also take red Krill but for the inflammation, and it does work. I am not saying it's a miracle pill that you can swallow and voila the pain is gone, but it does help me, where I don't need the pain meds as often, and that to me equals only relief. Hot springs should help your hand even it's burn, my sister inlaw suffered third degree burns on her leg awhile back, and she says if the water temperature is not hot she gets relief, but if the water is too hot then no, she feels the pins and needles and it feels like her nerves are on fire. She also takes red krill takes 2,000mg a day, and she says her doctor recommended it. She says she doesn't know how it help but she says she doesn't feel the pain as much.
When I read that you feel it reminds me of we the FMS group do have clumsiness. So we have to be extra careful. I remember one time, I was following my husband and daughter failed to navigate the sidewalk and fell, head first on the pavement, lucky because I did not feel too much pain but had quite the blue mark to show for it.

I hope you get some relief my dear, and that you move soon to a warmer climate. When do you anticipate to move in the lower 48. State warm and safe my evil twin.


conniehurts - November 18

Hi evil twin, the water temp at the is anywhere from 90 to 120 degrees! It comes out of the ground at 140 degrees so when they have first change it the temp is so high that even before the reynauds I couldn't get in it for long and would come out looking like a lobster!
I will check on the krill oil. The only concern I have about it is that because it is usually cold pressed it could and probably does have dangerous aspects that they haven't decided to tell us about et. So often we are not told of the dangers of supplements or drugs until many people are affected by it. After all the years that I have fought medical issues I have become very wary of new miracle fixes. Gentle hugs and Peace Connie



You must log in to reply.

Are you New to the forum? Sign Up Here! Already a member? Please login below.

Forgot your password?
Need Help?