Hello all, I am new to this forum I just signed up last night, I am a part of the psoratic arthritis forums and found this one through that. :) I have been diagnosed a few years back with fibromyalgia but I only had small flares here and there not lasting very long, at the moment I'm going on a week and 5 days of this week have been unbearable up every single night, not sleeping, my body started shutting down and I have had all sorts of problems from headaches/hot and cold/pain and tightness in both legs pain in feet, can't walk, out of breath when doing minimal things, Fibro Fog big time, heart jumping, I ended up in the ER. Since I'm still recovering from an ankle fusion and another unfortunate situation stemming from that ankle fusion (blood clots in legs and to my lungs and also a saddle clot they said i would not make it through) makes me a very lucky girl, but since all of this, this flare has been awful. I literally sob and can hardly get up because of how exhausted I have been, all trigger points are very active and so is my arthritis so as most of you am really struggling. This is my first real flare that has lasted this long and has made me really sick, my ? is how long does everyones flares last? do they come and go like arthritis flares? has anyone figured out anything that helps even a little bit? Diet? I am seeing a doc tomorrow who wants to help me he is not charging me as I couldn't pay him anyway, we are going to try some things and I warned him I will be a challenge because I have so much wrong, PSA, RA, IBS, Fibromyalgia, Restless Leg syndrome, degenerative disc disease, acid refulx. I'm so curious as what he suggests, I sure hope there is something to help soften these horrible flares.
I also have had a burning sensation on my face, under and around my jaw line and around the nostrils of my nose around my lips, does anyone have a burning redness to their face?
Ty I won't see him until next week because I have a procedure to get the filter out of my vein for the 2nd try this friday, lung doc on monday but that is going well :) all clots are gone :) lung looks good. and a skin cancer to be removed on the following friday I hope December has NO Doc visits in it. I took a very hot bath at my daughters and spent the night there, it was the first night now in 8 days that I actually slept and only woke up twice to pain but not enough to get me out of bed. Sure hope this flare is going still trouble walking today as usual, my legs are just so weak I really can't walk well. That is scaring me. Someone mentioned MS but my primary doc has not said anything about that. yes I've heard to take magnesium as well for some relief for the restless legs pulling feelings in them. I'll try anything at the moment.
My longest flare was 7 months. Sounds like you have been through a lot. With all of the other things going on, just make sure you don't account all of your pain to fibro. You don't want to miss something because the docs say it just fibro. Your legs will probably take longer to heal because you have fibro to someone who doesn't. That could be some of the pain. Just keep with the docs. I hope you feel better and this flare ends soon.
EDITED: I had said my longest flare was 7 months. When I got dx I had a flare, that is what sent me to the dr. I would say that one was over a year. After the dx I started to manage the fibro since I knew what it was. Then I flared again a few years later. I was off work for 7 months, but the flare started before that, so it was probably a year too. Can't seem to remember anything these days. lol.
I have to say coming here has been both awesome and discouraging, knowing this can last that long is SO disappointing and your right I didn't think that there could be underlying problems not just the fibro. I seem to be blaming it all on firbro. BUT my knees I know is an arthritis flare, the bad pain behind my head I'm putting to the procedure to get a filter out of my vein, from when I had the blood clots, they put a grenfield filter in my vein to catch any other clots that might branch off, a 30 min procedure ended up being 2 hours and I thought my head was going to explode when he was down, they went in through my neck and in and out constantly with things to try to retrieve it. Failed, I have to go again this Friday NOT looking forward to it, having PSA and on the meds that lower my resistance to illness I don't heal as fast anywhere and I seem to have double the trouble every time I do something. So over being cut everywhere. (ankle, neck, 3 soon 4 Moh's treatment which swelled up my eye so bad you couldn't see it) I'm OVER any procedures or surgeries…I will learn how to manage my pain which sometimes is impossible BUT i can't do this anymore. I don't remember things either, at least that part was reassuring hearing almost everyone has the fibro fog, my girls ( i have 4 of them) all say mom is going to have alheizeimers now at least we know what is causing it loathe things I say sometimes is quite funny actually but also frustrating, a word I never intended to use just comes out and then I correct my self for instance, I told my granddaughter to go out to the machine…..she says what machine? LOL I said oh haha I meant the car, to get something she wanted we left in the car I said machine, then theres the stop dead in a sentence and can't remember a word I want to use or where I'm going with this conversation. It's crazy.
I have that too. My daughter was talking about what her animal print was and that her "big" in her sorority was just like her except she had a different animal print that she liked. My son was like, what are you talking about? Do girls really have things like that? I said yeah some do like elephant. ELEPHANT? That's not a print. I meant to say zebra. lol. They both laughed at me. My son doesn't do it yet and I hope he never goes through it. He has fibro too. They both just think mom is crazy like all kids think of their parents.
Welcome! I belong to the PsA site too, along with several others! Oh girl, I feel for you, you have a lot to cope with, and it's understandable that when this hits, it is going to take you down sometimes! We have many of the same health challenges, so I really relate to you.
I had never heard the term 'flare' until I joined the group, my Doctors always referred to them as 'pain cycles'. So pain cycles, all over body muscle spasms, and sleeplessness/fatigue are something they are constantly trying to remedy with me.
Along with some pretty heavy AMA meds, I take vitamins and digestive supplements from my Chiropractor, and with all of the efforts of these brilliant, compassionate Doctors, I still have my tough times!
My Rheumatologist told me that the PsA most likely is the cause of the Fibro, and although it is, according to all of my Doctors, the very least of my problems, (but don't think I don't suffer) I chose this site because of the great moderators that were in place when I joined and the fact that Fibromyalgia is the most controversial illness of today. Lots of young people suffer this too, teens, young parents, and they played a big part of winning me over. Though the information is great, this is a very compassionate site, very nurturing,
I cannot tolerate Sulfur well, but if you can, MSM is a great way to help with inflammation! Be careful of the Anti-inflammatory meds, they can do a number on your liver and kidneys. I was cut back on mine, as I was taking more than the recommended dose, and can really notice the difference!
OTC Sportscreme is a great way to sooth aching joints, muscles and bones, available on drug and grocery stores. Just do NOT use it with a heating pad. If I remember any other OTC things that may help, I'll let you know!
We have over 60 groups on this site, we have Fibro and arthritis, Fibro and autoimmune, Natural healing, to name a few that may be of special interest to you. You are welcome to join and contribute to any and all of them.
So nice to have you with us, look forward to getting to know you!
Wishing you well,
THank you SK, sounds good I'll look into some of these groups. My doc told me as well my fibro is stemming from the PSA, and I get bouts of restless leg during the night and between all three it'ss driving me crazy. I have to say for 2 nights now after a long 8 I have had some relief, in sleeping anyway. I still am having trouble walking I walk like my legs are sticks that don't' want to bend and I feel all that pulling in the back of my legs. The only thing different I am doing is taking very hot baths before bedtime and REQUIP for restless leg syndrome.
. Sometimes If I get up and walk even though it hurts like bleep, it calms it somewhat. I was on anti inflammatory's for many years until she moved me to Remacaid. I have been on and off with prednisone this year due to the surgery and my knees flaring so badly, I don't go on it for long periods of time but man is it a wonder drug when I do. I've had a liver biopsy and all is well. I was not aware of how big this disease is, and definitely not knowledgeable of all of the symptoms of it until these past few weeks went everything went bazerk on me. Still in disbelief that most of my symptoms was fibro related. Not that I don't believe it can do this to me but how many different issues I have because of this. Natural Healing sounds like a place I'd like to visit. This may sound weird, but I started drinking Apple Cider Vinegar w/Mothers a shot a day but mixed with juice or something, I've added lemon to my water and also honey.Since my surgery I have gone down hill all year long, he still needs to do another surgery on my foot, and then the total knee replacement but I can't do all of this again, the ankle fusion has had me down since back In March, Just not willing to be bedridden again while my body freaks out and doesn't heal well for me. I just want 'me' back and mentally I'm doing ok, physically not at all and it gets to me.
LOL i just laugh at myself, I've never let it bother me really only sometimes when I look stupid and try to make up for it. Such a strange disease this is.
I do this regularly and my hubby will always repeat the 'wrong' word and all I say is, you know what I mean LOL
My flare last foe 3weeks
Sorry to hear about the flare. I had my first major flare THREE YEARS ago and I am just now, finally, starting to feel somewhat like myself again. For the first year it was everything in me to just get out of bed and take a shower for the day. I gradually started adding a little more to my schedule, but still taking time to fall back if I needed it. It is a very delicate dance we do.
Now I am taking nursing courses for my BSN, riding horses 2-4 days a week, and a little bit happier. You have to go at your own pace and forget the rest of the world's agenda.
Reading everything your going through, I think you need to cut yourself a break. Anyone who has sugery like you is going to have down time, and isn't going to be rearing to go in a couple of weeks. Your body needs time to heal. My guess is, your fibro friend won't go anywhere until your overall body pain level drops to some kind of threshold. I've read a lot how the anesthesia itself can start fibro flares.
I have a lot of trigger points, and I've found that the headaches are all about the back of my neck. I can find the muscles spasming in my neck, and work them out. I suffered with headaches for years, and it was all in my neck. A lot of people talk about taking lyrica or cymbalta, and it seems to help with a percentage of the symptoms. I would guess that they wouldn't want to put you on anything until things calm down a bit. It doesn't sound like a good time for a nasty side effect.
If you can afford it a trigger point massage person is with the money in my opinion. I can't imagine that you wouldn't have areas that are super tight. Try to keep your blood sugar from having highs and lows. Stay away from the sugar and eat whole grains in the morning. I know it's hard when your sick to remind yourself to eat. Stay away from stuff you know upsets your tummy.
I really am in love with the D-Ribose supplement. I was almost constantly in a fog before I started taking it. My muscles recover faster. I ordered mine online, but you can probably find it in a GNC store. The main concern is it can cause low blood sugar, so you take it after you eat something. They've discovered that patients with heart problems, feel better, have more energy, and it helps calm the heart. Body builders have been taking it forever in their cocktails. It's still new to people because it used to be really expensive, and it isn't available by itself in grocery stores.
I think sometimes you can only focus on the things you can control, and forgive yourself for the things you can't. I hope some of this stuff helps you, as this is stuff from my experience of trying to help myself. I hope things settle down for you soon, much love.
For me it bounces around. I've had flare ups that last days, weeks, and months. The ones that are months long can still have a little up and down-ness to them, but generally tend to down and down and then take a loooong time to recover from. My first really serious flare up took a good eighteen months to get to any real kind of functionality. I've been in my current one for a year. I finally did get into a doctor - really like him! - and we've had small, but almost consistent improvement. This little success is due I believe to going gluten and dairy free (I have leaky gut syndrome & IBS - among many other things), and taking thyroid replacement therapy to get it to more optimal functioning level. I can walk from room to room again, but still get very worn out and winded with seemly the simplest little things. I had to take the difficult step of getting a wheelchair. After the self-consciousness it's actually been an extremely helpful tool! Still in my twenties so it hits my independent pride, but have to say it's actually given me a little more freedom and allowed for more participation in things I otherwise couldn't.
Also, there's this site http://www.cfidsselfhelp.org/ that has "courses" among other resources mostly information wise on taking back control of your life and learning to work within the limits of our health. And then very slowly expanding what we can do. I kind of sort of did it on my own with my first major flare up, but this has a self-paced course I'm working through bit my bit. So I can learn to help me, help me. =)
There is a lot I think that can help soften the horrible flares, but usually it's a lot of little things/changes in a wide area of things that collectively make the biggest different. And it takes a LOT of time, patience, and adjustments!
My heart goes out to you! I have many of the same things and it's frustrating and sometimes horribly overwhelming at times! Hang in their!
My flareups have lasted over 3 weeks at times. Now this was when I lived down south in San Diego. Now that I live in Northern California (Bay Point) my flareups last only at the most a week and a half. Yes mine come just as arthritis flareups come and more often than not both appear together with me.I take Oxycodone when my pain gets unmanageable. I have had both for over 20 years now. I have several other syndromes which pop in at times. I have just had to deal with all of them because I have yet to find a doctor up here in No, CA who really understand what I am going through.
Since I developed AFib about 5 years ago many doctors have told me that my heart problem makes it difficult for them to prescribe any really strong pain relievers. I am 63 years old now and my age has made doctors leery of dealing with me also.
How to soften those horrible flares? I use medical cannabis! I have never liked Marijuana (I was a hippie back in the late 60's and early 70's and never smoked the stuff)but when my daughter suggested I try it it was an alternative. She made me Coconut Cannabis Oil that I could mix into chocolate bars (buy a box of Hershey Chocolate, melt it and then mix it with 1/4 cup of the Oil and then pour it in a 9X12 baking pan and chill it in your refrigerator. When you have some bad pains break off a piece of the chocolate and sit down in your living room (or wherever) and eat it with a cup of tea or coffee. Lay back on your sofa and turn on the TV and relax. Within 30 minutes you will notice that you do not feel the pains although you are aware they are still there. Strange but true.
I do not use the Cannabis daily but only when needed.
I have the same illnesses as you except the arthritis. I was diagnosed in 2000, and had a flare for 1.5 out of those first 2 years.
Then, on and off over the years, with all different time frames. Most recently, the last 3 months of 2011 was a major flare.
2012 was the first entire year that I was relatively flare free, save for a week or so here and there over the course of the year.
But in 2013, I had the worst flare since the beginning, and it lasted 6 months. January to June. Relentless and difficult.
And ironically, I also had the same burning sensations on my lips and jaw that you describe. Never had that before.
But it went away completely in July. Except the IBS has returned since late August. So you can see it is totally unpredictable.
Leesa, mine can last from 1-2 weeks with varying forms of severity. I am just getting over 2 weeks of a flair with migraines everyday. I could not stand myself, talk on the phone, slept when I could, and cried when I was alone.
Gentle hugs my friend.
I hear ya on the cry when I'm alone but I look at it as a good thing, rid the toxins get it out and try to move forward a good cry actually helps me. I had 8 straight days of this and last 2 I've slept ok, still can't put my knees together so I stay on my back a lot and that aggravates the arthritis in my neck but at Least I am sleeping. I welcome these last 2 days! I was relieved to read that a few people flares last a week,well thank god for that because others say they flare for months to a year. I don't know how I would deal with that. And to read that it has varying forms of severity is actually a blessing too, just knowing some days maybe e better than others at least gives you hope and days to feel a bit better.
It's good to hear (well not really good lol) but good to know someone else has the burning and itching, and that I'm not going crazy trying to find out any 'allergies' or 'new things' I have changed recently to see if this is what was causing it, geesh this Fibro is stinking miserable at times. my face is always itchy and my neck now too and collar bone area, constantly itching it, it kinda burns with the itch too. do you find relief with hydrocortisone by any chance that is what I'm using right now but it doesn't seem to help the burning feelings.
Hi Jak, I understand this with doc's, mine actually told me last week when I called with so many problems, I don't know how to diagnose you so just go to the ER. I want a new doc! My arthritis doctor is so awesome, smart, and knows Fibro well, BUT i have to see the PCP when new issues show them selves, and anything fibro related back to him, the one who brushes me off the to ER because he doesn't know what to do with me so how do I call and see him if he doesn't want to help, or educate himself more on this disease.
Hi Butterflydragon firstly I just read you are in the hospital and I wish you a speedy recovery! Praying and thinking of you!
I haven't tried the dairy free yet, I LOVE milk like a baby with a bottle loves it, and w/arthritis I would think it would benefit me there however so many say how bad dairy is and to eliminate it. I have a very sensitive stomach and if I eat ANYTHING out of a box or with preservatives I'm sorry later, stomach really bothers me so I have to eat raw veggies or cook them from being raw, nothing in cans or boxes. I have IBS too and not sure what I do to help it, it's not sever but I NEVER go to the bathroom normal. I to have the getting winded very quickly just from walking! I thought at first it was the weight gain and the recovery from the ankle fusion that has made my body so tired and it contributes to that but am now learning bout the fibro too having a big hand in this. and I too have my wheel chair and welcome it now as it just plain hurts to tears to try to walk. Thank god for wheel chairs although with arthritis in my hands and shoulders it's hard to push it along myself..and I find not many are willing to help you when your out and about in a wheel chair, some have and I felt the love and kindness of others. and I feed off of that and try to stay positive because of 'those' type of people that enter my life here and there. :) I will return the favor even more so now. Your only in your 20's WOW so young to be dealing with all of this, I have been in pain since I was 24, with the arthritis and I just keep on adding on the diseases now I'm 51, and very young, ER people said you look good, you don't look like your in your 50's, my body feels like it's in my 80's lol if they only knew. Yes we do sound similar in problems a lot of people here do to me, I'm just happy I found this place and you/others who are educating me and helping me understand what I may or may not be able to do. Thanks for the hugs, gentle hugs back to you!