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Donna F
July 16th, 2012, 11:51 PM
I haven't been very active for the past 3 weeks, no sewing or quilting at all. I go through flares because of my fibro and back pain but wow! Ever since I had my scs trial pulled out I have been a mess. All I can do is get up, get on the sofa then back to bed. This is not normal for me. My question is, all of you out there who deal with fibro, chronic pain or any other debilitating problems, how do you manage? I read about all you beautiful people that can make all these projects in a day (Jean & Mrs. Daisy) or even a weekend....how??? I am serious about this question. And for those like me that may not complete something overnight but still complete it, and you deal with these problems, what do you do that helps you? I'm looking for tips on being able to sew & create even when I can't stand long, sit long, or my hands won't move like I want them to (I get jerks in my arms and hands that could throw items without my will). I have to admit, today I adjusted my meds so I got to sew for 2 hours then my body was done. I hate my body. My mind has about 13 completed quilts but my body won't let me go that fast. Heck, I have about 15 bins in my sewing room complete with everything to make 15 quilts, I want to do them so bad!!

lilmouse
July 17th, 2012, 12:22 AM
I can't help you with your issues but when I can't sew I know what you are going through.......sending you hugs because I know how frustrating it can be when you can't do something that you want to do...I deal with back spasms and carpel tunnel in both wrists and have gone through bouts of tendinitis again in my wrists....so I do understand...most of the time I just work through the pain but not everyone can do that!...I am here for you!

sewbizzy
July 17th, 2012, 12:40 AM
Donna, I sympathize with you...I have fibro and arthritis (already had carpal tunnel surgery on my right hand)...years ago i developed Epstein Barr Syndrome---always tired and sleepy (I am told it lies dormant in your system and flares up occasionally)...I do take Motrin each day---couldn't get by without it...there are somedays worst than others...
I will say that I am fortunate I usually can still sew---machine and hand sewing...I love it so much...I hope I can continue, but I can't go fast...
I am sending prayers your way...Blessings, too

heavnli62
July 17th, 2012, 01:01 AM
I understand your feelings. I got hurt at work. Have been out of work almost a year. I say ....I am going back..... the doctor is saying.... never going back. I have Myasthenia Gravis (in remission) and a year ago was beat up by one of the individuals I took care of. (Special needs.... autisic and retardation) Three protruding discs in neck, 3 in mid back... and at that point only 1 ruptured disc. I coughed and sneezed one day and ruptured 2 more.... So, with that being said..... I am in constant pain...walking, standing, sitting, and now get migraines. I love sewing, have 4 sewing machines.... nothing expensive. My childrens father passed away 2 years ago, so my younger brother helps me alot. He has made me sewing stations, so I can sit or stand depending on how I feel. Without it being set up that way.... I wasn't getting anything accomplished. I can choose to work on the same project or 2 different projects.......
You will figure something out I am sure. There are so many great people on here...... the ideas will start heading your way in no time and you will soon be sewing again. Hope this helps you some.....:)

tortugaquilter
July 17th, 2012, 01:32 AM
Donna,

I have fibro, but am fortunate to not have flares very often, but I had a bad one two weeks ago where all I wanted to do was lay on the couch and cry, but since I have to work, that is not an option. At night when I got home, I worked on some small hand projects on the couch because it helps me not think about the pain.

Some things that help me. 1) i don't compare how much I accomplish to others on this forum or in any other part of my life. I can only do what I can do. 2) On good days I work on projects I can't do on bad days. For example, I try to have several quilts sandwiched and ready to go for FMQ at once since that seems to be the hardest part of a project for me since it requires strength in my hands and shoulder movement. That way on good days I can quilt. I also find it hard to lean over and sandwich a quilt even with a high table, so I have a place set aside where I can take several days to sandwich, or I invite friends over to a hen party and they help me. 3) I look for some simple techniques or patterns that I can finish in a few days so I can have the sense of accomplishment when I finish the project. Baby quilts for charity that don't require binding are some of my favorites.4) I do what I can, and the days I can't, I plan for the next day I feel good so I can make the most of it.

Best of luck to you. Remember you are never alone, there are lots of people on the forums here for you.

phoots
July 17th, 2012, 01:35 AM
Donna, I'm so sorry for everything you're going through. I have medical problems, but nothing to stop me sewing at this point. I have epilepsy, thyroid problems, I have tremors in both hands (now controlled by medication), and awful balance. I couldn't walk a straight line to save my life. But nothing like you. I know that at some point the medication won't control the tremors, but I'm not there. My biggest problems in getting my projects done is myself...I procrastinate. I will keep you in my prayers!

Pam in Vegas

janluna
July 17th, 2012, 01:36 AM
Donna, I was injured 33 years ago and have had 3 major back surgeries. I have been in pain all 33 years. I have pain meds for when it gets really bad. I can only sit for short periods of time. I can stand and walk for a couple of minutes. So, I sew and then I move, and then I sew. And then I rest. You do what you have to do to get through the day. It takes time to learn to pace yourself. I know how frustrated you can get. I went from being a super active person, to nothing. I was an EMT, firefighter, A captain in the fire dept. a 2nd Lt. in an ambulance corp, a Mom of 3 active kids, a wife, and a state instructor for First Responders and a Red Cross instructor. Then I worked at the local hospital in the emergency dept.. Then after all the operations, I had a brain hemorrhage. That really laid me low. I had to learn to live my life differently. My family was fantastic. The kids helped, my husband became a great cook, I learned to listen to my body, I learned to pace myself.
It's hard to do, but it can be done. I'll say prayers for you to find your new way of doing things. And for healing. Hugs, and Prayers, Jan L.

brook
July 17th, 2012, 02:58 AM
I have a friend that had Fibro for years and it kept her from doing normal activities. Then she decided to try a glutin free diet. She is now free of her pain. I've noticed that more and more people are needing this kind of diet. You might want to give it a try. : )

auntiemern
July 17th, 2012, 03:33 AM
Donna, believe me when I say I know exactly how you feel. I also suffer from fibro, rheumatoid arthritis, and systemic lupus. Being in constant pain is no fun. Most days I just do it. I don't really know how to explain, how I manage to get all that I get done, done. I truly believe, in my case, the Lord works through me, and makes it possible for me to quilt. There is never a day that I do not hurt and am not swollen somewhere. By the time I go to bed, I can barely walk, and DH has to help me get ready for bed. Making the quilts I do for the PICU, or for foster children, or wounded warriors is my passion. I take prescribed N SAIDs, muscle relaxers, and pain meds daily. I also am very aware of the depression that can be brought on my such illnesses. I currently take cymbalta for that, and it also helps with the fibro. In reality though, nothing is ever going to make you pain free. Some people are just better at dealing with pain than others. In my opinion is a matter of mind set. You can either let the pain dictate your life, or learn to work with it. Sending prayers your way, and hoping you can manage to live beyond it, and not let it rule you.

Donna F
July 17th, 2012, 04:37 AM
Thank you for being here for me. I guess I thought I had it bad but there's always someone out there that's worse. I will be honest, I cannot take pain, never could. Thanks ladies for keeping me occupied on another sleepless night of pain. I wish I had someone like heavnli has to set up stations for me, that's so sweet. My DH says he will but he's so busy cooking, working, cleaning house (what I cant do) he doesn't have time. Hopefully this flare will pass soon. I am considering calling my Dr for help. I am one of those patients that never complains & is all smiles to see him. I need to complain! There has to be more he can help me with.
Coleen, my rheumatologist is in the process of sending me to get tested for celiac disease so I can't change my diet yet so he tells me.
I am so amazed at how well the rest of you do with your illnesses. I hope I can become that strong.
I'm working on it...lol Hopefully tomorrow, err I mean today will be better.

Love to all, Donna

rebeccas-sewing
July 17th, 2012, 06:17 AM
I've read all your posts, ladies. I'm so sorry for your troubles. Wish there was some way I could make it all go away and give you back your health.

Lisaau
July 17th, 2012, 06:46 AM
(((((((Donna))))))))

I understand how you feel l've had problems with various conditions my whole life. I've recently been diaognosed with "Subluxation of the Spine or spinal decay" there is 3 stages and l'm in stage 2...and also where my skull meets the top of my neck its malformed.all our skulls rest on the "atlas bone" which in turn is sitting on the "dens bone" which has a spur which comes up through the atlas bone and at the base of the skul there is a notch which sits over the spur of the dens bone and this stops our skulls tipping to far forward or backwards. That entire area in me is malformed and l was born this way. In turn my entire spine is twisted or curved its decaying which has caused damage of my nervous system. My right arm is really weak and my thumb and the two fingers next to it are numb and my hand keeps giving out on me. If you held my left hand it would feel normal and warm to you but for myself its so cold from nerve damage that its burning.

All the damage on my nervous system through my spine has presented itself in my left knee and its extremly painful. I learnt there is different levels in pain. Every morning when l wake in the morning and have to use crutches to walk for the first 30 mins or so because my knee and left leg are so stiff and sore l can only put my tippy toes on the floor.

When l do have the desire to quilt l try to do one row at a time and then walk away because l just simply cant do it for any longer when l get up off the chair l cant walk and because of my right arm and hand it takes patience and alot of frustration and wriggling of the fabric to try and get seams to match up. I personally am trying really hard to not let it beat me as l'm facing spending my life in a wheelchair paralysed. So you arent alone Donna chin up mate and know alot of us understand how it feels.

carolv
July 17th, 2012, 07:55 AM
Same here. Some days I can get alot accomplished other days, not much at all. Right hip pain, lower back pain, Left shoulder does'nt really hurt but can only use arm in certain position's. Can't sit, stand, or lay down very long at all, I have not been able to sleep in my bed for month's and month's. I sleep in the recliner on my side, it's the only way I can get any rest. Prayer's for everyone.

bobw103
July 17th, 2012, 08:58 AM
Donna-I too have fibro as well as what I call chemo fog from the chemo I had 6 years ago. My ability to learn new things, multi task, concentrate etc is pretty well trashed. I agree with what Tortugaquilter said. And sometimes when the fibro is at its worst it just feels better to tell someone, someone who gets it (many don't).
I too compare myself to others on here who can whip a quilt up in no time as well as do what I think are difficult quilts. I just need to know that I can do what I can do when I can do it and be thankful for being able to do it.
Hang in there Donna and talk about it when you need to.
Bobbi

Bubby
July 17th, 2012, 09:03 AM
Donna...I have to deal with diabetes, lupus and now arthritis. The hot weather causes the lupus to flare and the pain from that causes my blood sugar go up. All my life I was able to push through and not let anything slow me down, but no more. I eat right, drink lots of water, avoid caffeine, get enough rest and give myself permission to not be productive every day. I try to keep myself focused and not let the pain carry me away and drag me down. Some days are sewing days, but other days I can't sit at the machine at all. I guess we all do the best we can with what we have to deal with. When I can't sew I have my laptop in bed with me and I make plans for what I will do when I feel better. I also keep a gratitude journal that I write in every day. Keeping a positive attitude goes a long way for me. I'm adding you to my daily prayer list...I know how miserable it is to feel poopy most of the time. Hugs, Barb

madampolo
July 17th, 2012, 09:15 AM
Donna, I have to tell you my story, too. Three years ago I loss the use of my legs. I couldn't stand, or even sit. I also lost the use of my mind. At the hospital, a special doctor diagnosed me with a lack of vitamin B12. That's right. I had NO vitamin B12 in my body at all, a condition no doctor has ever seen before. Your body makes B12 out of protein (meats), and stores it in your liver. You should have three years worth in the liver. I had none. Vitamin B12 is vital for your nerves, including brain nerves as well as for your arms and legs. They did a biopsy of my stomach and found that I didn't make an enzyme that converts and makes B12. Normally, a low B12 makes you anemic, but I didn't seem to go through that, just went straight to the bottom. They say if you catch it in time, it will be reversed with B12 shots, but mine wasn't caught in time. While I did get tremendously better, I have permanent nerve damage in my legs, and pins and needles in my hands. While in the hospital, I couldn't hold a Styrofoam cup without putting my thumb in it, and I would crush a soft drink can. I couldn't write, nor could I type. Well, they pumped me with B12 shots, and slowly I got better. After two weeks, I got my mind back. I spent two months in in-hospital physical therapy, and another two months in out-patient physical therapy. I had to learn to sit, and use a slide board to transfer from the hospital bed to the potty. They had to brace my ankle so it wouldn't turn under as I learned to stand. I took occupational therapy to learn to write again, and to type. The day I was released from physical therapy, I stood, fell, and broke my ankle! I was in a wheelchair for six months, then a walker, then two canes, and finally to one cane. I walk around the house without a cane now, but I am very out of balance. Just like Phoots said, I can't walk a straight line, and I walk like I am drunk. Now, after three years I am grateful I survived, and that I had one very smart doctor that diagnosed me correctly. I take B12 shots monthly now, and will for the rest of my life. Since I have nerve damage in my legs and hands, I take two different drugs several times a day to make it manageable. I think everyone who has any kind of problem should ask for a B12 test. It is a simple blood test, and they do that routinely to me now. Also, I have read that many dementia symptoms in elderly people could be a B12 deficiency, so if you have an elderly person showing those signs, get them to take a B12 test. I have a nephew with Celiac disease, and he is on a gluten free diet. I feel sorry for that little boy who can't go to a birthday party and eat the cake, or take a cookie from anyone. His mom makes his own cake and cookie with gluten free products. That same mom has had a seizure, and she is going on a gluten free diet as well. I think it is worth trying a gluten free diet to see if that helps. I think it's like B12, something simple that really can help. Don't feel bad if you have never heard of the B12 nerve damage thing. I never had. I think having zero B12 is rare, but low B12 is common. One last thing regarding quilting, I can sit forever, and my hands, although pins and needles, are working perfectly. So, I can sew just fine. I can't stand for long. I have a Grace quilt frame to quilt, and I can't stand for too long. I maybe can do two rows and then sit on a bar stool type chair for a few minutes. Don't ask me why I decided to tackle a king size quilt. I don't do quilts in a day, but I do plug along until one is done. Take care, Donna. I feel your pain!

HandsOffItsMine
July 17th, 2012, 09:27 AM
(((Donna))), so sorry you're in a flare up. You know that we share Fibro. I also have Chronic Migraines since my twenties and Rheumo since my 40s. Reading these two pages, we have lots of company sadly.

I think the hardest adjustment for myself was to realize that I was going to be the A+ x 15 Super Person anymore who could function on 4 hours of sleep and do five things at the same time. Learning to slow down and listen to my body. I have projects broken down into blocks of time that I know that the Bod can handle on most days. When there's a flare up - I adjust the schedule and work on my laptop, handwork, read or just am too doped up if it's over the top pain wise.

Being on the mainland since May 10th didn't take long to activate my Fibro - about two weeks, the constant weather fluctuation and barametric pressure put it right back to where it was when we lived in Calif. My migraines are up there again as well. I'm sure when I get back to the Island where the weather is steady within five degrees, it will be better again.

Try to see if you can get a friend/handy man to make those adjustments in your sewing room. Work in short window periods, not marathons. Most of us are not going to be Jeans or Marilyns, able or not. :) We're all individuals and work at our own pace and capabilities, which is just fine. We love each and everyone of the quilters on here!

Huggers, Ruby

CrazyMtnLady
July 17th, 2012, 10:15 AM
{{{{{Donna}}}}} Hugs to you and all those that are suffering. I woke up this morning with a terrible back ache (actually my whole body aches) from all the house work I've been doing. I get the back aches a lot. Then I read your post and thought, I have no right to complain about my back or body aches at all.
There are days when I ache and don't want to do anything, but I push myself until I can get it done. Then I push a bit harder for the next project on my to do list, which is always long. And DH is not a great help around the house. I don't complain about my pains to him because he has Diabetes, High Blood Pressure, and ALWAYS hurts worse then I do.
I take Aleve or I take a muscle relaxer because I get a lot of muscle cramps. Yesterday I was trying to rip out some stitches and my right hand got a cramp in it and my fingers all looked like stiff boards going every which way. DH also has some pain meds and I take one of them once in a while. I have not been to a doctor in 10 years. Don't shout ....I have an appointment set for October!
The doctor I am going to see, is who DH sees and she is our neighbor. She said it was fine for me to use the muscle relaxers and a pain pill now and then. She also told me to take Kelp for my non-active thyroid (diagnosed in 1998). I have noticed I have more energy with the Kelp.
We have a small 2 person hot tub. And it helps a lot to melt away some of the pain. And we have one of those blue above ground swimming pools. It is only 12 foot and about 3 foot deep, but I do feel better when I just get in and let my body relax.

I will never complain about my aches and pains again. God bless you. You are in my prayers.

I

carrie liz
July 17th, 2012, 10:52 AM
I have RA and it has frozen my fingers on both hands. I do pretty well in summer with warm weather and no fronts which cause a flair. Still it is one day at a time. I have one rotary cutter that I can use as long as my wrists are strong enough. Some days my wrists don't work. I also have several projects going at once so can choose which one to tackle. I usually work only an hour at a time and then rest. I couldn't grip a needle until I cut off the finger of a glove like the doctors use and used it on my index finger. It grips the needle so I can pull it through. I use the long tweezers that came with the serger to grip thread and get it through the sewing machine needle. I have to pay someone to FMQ my finished tops. I am blessed with a friend that does a beautiful job and a husband that is willing and able to pay for it. Like your husband, he has had to take over the household chores. I hate to ask him to do more, but sometimes he will cut strips for me when I just can't manage. I agree that each of us need to find peace with our situation and never compare what we do with others. I have met two ladies that want to learn to quilt. Teaching what I know to others is fun. They encourage me to keep going.

Blessings, Carolyn

Claire Hallman
July 17th, 2012, 10:55 AM
Bless your heart and those of you that deal with pain every day.
There is help for blown discs, it is simple orthoscopic surgery called laminectomy. Talk to a neurosurgeon about the possibility, I have had three and they work wonders but if you put it off too long you can have permanent nerve damage. I guess no surgery is simple but the rewards are amazing.

Sandy Navas
July 17th, 2012, 11:24 AM
All I can say is that as I've read each message here I have said a special prayer for the writer. And I will continue praying for each of you.

csarina
July 17th, 2012, 11:28 AM
I also have fibro and arthritis. Thankfully my fibro is not too bad, but like you I get flare ups, usually when I have been under stress, it does not always happen straight away, it may be a week or so after the event before it kicks in. The muscle jumps at night are what get me, if I cannot get to sleep I am stir crazy.

I do managed to sew, I have an adjustable chair and a box my feet go on, I use my machine without the foot pedal sometimes, especially if my right knee and hip are having a dance together, I do not sit for too long, get up and move about, maybe just leave the machine on and go and do something else. There are days. when like you I just move from bed to settee and back again.The medication helps most of the time.

I also have a problem with my eyes and have just had to have a deaf aid, my left eardrum perforated and I hasve significant loss of hearing in that ear.

I know just where you are coming from...........have a hug, hope you feel a little better soon.

Lisaau
July 17th, 2012, 11:39 AM
l wont have surgery l've spent 46 yrs of my life having 9 laproscopie surgeries and my hearing fixed and cysts removed athrscopes on both of my knees whichthey didnt fix

SuzyQue
July 17th, 2012, 12:49 PM
I, too, have fibro. I have had great success with Krill oil capsules. It eases the pain just enough to keep going. I have had to rethink a lot of my actions and avoid stress like the plague. Some days are better than others, but every day there is pain. Sewing and quilting fill my heart with joy, so I try to do it as much as possible. I am intrigued by how many members on here are suffering in pain on a daily basis. ...another thing we share! My prayers for each of you.

Genny
July 17th, 2012, 02:16 PM
Donna I'm so sorry to hear that you're in so much pain. I hope you get some relief soon. I do understand some of your pain, and how depressing it can be, as I have arthritis and even though they've not run tests for it my doctor says I probably have fibro too. Sometimes the pain is horrible and I can't take anything prescription because of my kidney problems. I pray that you and everyone on here thats in so much pain starts feeling better soon.

BellasQuilts
July 17th, 2012, 10:44 PM
Hey Donna, DD#2's MIL has fibro and she went to Europe and all the symptoms disappeared - all of them! They all returned when she got home. Not suggesting you move to Europe, but I would suggest that it seems to be environmental (at least in her case). Here in the US they allow much more crap in our food. Worth looking into I would say if you are that debilitated.

Donna F
July 18th, 2012, 01:18 AM
I want to thank each and every one of you that have left such precious loving messages, not just for me but for everyone that is here and struggles with pain, and for those of you that stood up and told your story, THANK YOU! So many of them made me cry, not only the physical pain that you've been through but enduring it and knowing your life has changed. I don't know anyone else (in person) that has the same problems as I, but boy! do I know a entire family of folks (you guys) that understand me and support me. It makes me feel so much better.
I did find out that my vitamin d level is 5 out of 50 (normal). I guess that adds to the problem. That's the lowest its been yet, I've been fighting my levels for a year now. My body just can't absorb it, not even on the highest doses or sitting in the sun all day, although I have a tan...go figure??
Anyway, thank you all for sharing with me. I love you all for being brave and telling your story. I guess we have a lot more to pray about now huh?
Love N Hugs, Donna

Donna F
July 18th, 2012, 01:19 AM
Hey Donna, DD#2's MIL has fibro and she went to Europe and all the symptoms disappeared - all of them! They all returned when she got home. Not suggesting you move to Europe, but I would suggest that it seems to be environmental (at least in her case). Here in the US they allow much more crap in our food. Worth looking into I would say if you are that debilitated.
Hmm I wonder if Europe's food is better or is it the air??

tortugaquilter
July 18th, 2012, 02:11 AM
People in my little city who know the story of my husband's long battle with bone cancer, and everything that went with that battle and our family, along with my illness, and my mother's illness and my care of her, are always telling me how strong I am and how they don't know how I managed all those years and after. My response to all of them is that no matter what I have been through, I always know there is someone out there going through something much worse than I am, as evidenced by the year my husband and I spent at M.D. Anderson Cancer Hospital in Houston, TX.

After reading all the responses on this thread, once again I am reminded that my problems are nothing compared to others. It also reminds me to not forget my daily prayer asking God to grant those in pain some time each day free of pain.