I'm a 46 year old woman who has been dignosed with fibromyalgia. I had my first dx about 8 years ago. I was also tested for many other things, but because they all came back negative, the rheumatologist just told me there was nothing more he could do and I should leave now.
I've continued to struggle with it for years. Recently the pain has got so bad, I couldn't walk or use my hands. I'm left wondering if this could still be fibro? The pain in my feet when I try to walk is so bad it gets me in the pit of my stomach. I'm used to pain, I've been dealing with it for years. But this latest flare up has really got me worried. I am exhausted from it. I was on Amitryptoline at night, and when I couldn't walk, I was also put on meloxicam. This has at least meant I can walk now, but I still can't hold anything heavy for the time being. I've done a lot of reading over the years, but I can't seem to make all my symptoms fit neatly into the fibro catagory any more. My calf muscles are really tight at night, and it feels like pressure. Obviously there are all the usual aches and pains too, but I'm just wondering if any of you have the same? I can't take anything that makes me drowsy because I have a little girl who just turned 7 who has epilepsy - 90% of her seizures are at night. Could the pain be so bad because I can't take a high dose do you think?
A lot for a first post I know, but I have to get this sorted as quickly as possible. I can't be this disabled and care for her properly. She had a seizure at 4.15 this morning, and I couldn't lift her. That is just not an option for me.
I am so sorry that the pain has gotten worse for you. I wish I had the answers that you need, but I don't. All I can do is offer a shoulder, ( my arms are no longer very dependable ) and an ear. What I found that helps me out when my arms are so weak is to have my hubby gently massage them and then use the heating pad. I also started using Biofreeze and that helps some.
I have most of my problems in my arms and my legs, and my lower back. My hands are hurting really bad today, especially around both thumbs. I wish I could help you more. Take care.
How aweful to be responsible for a child that has severe medical issues and have fibro. I wonder if your own health issues are related to the stress of knowing you have to be available 24/7 for your daughter? It is a huge responsibility and it leaves you with a lot of stress. Stress agrevates our condition and it is very possible that you are hurting because of the stress. You are in a very hard situation. I feel for you very much. I have pain all of the time . Much like you described and it is very difficult to get through the day sometimes. Most folks do not understand what we go through day in and day out. If you look good to the average person it only makes the understanding harder.
I have got some relief with chiropractor help. Massages help a little but whenever I am in a very bad flareup it alwasy coincided with stress. The flareups can last anywhere from one day to 9 months and anywhere in between. I am on my 5th month right now. It was a slow build and then it hit me very hard. Excrutiating pain. I really did not think that it was fibro this time around because of the intensity. I am still trying to reduce the pain and I am a little better but it is still hard every day.
I wish I could offer you some relief. Knowing how hard it is too function and not getting enough sleep at night you have a very difficult time. Is there anyone else that can help you with your daughter for a couple of weeks so that you can get some much needed sleep and maybe get a handle on the pain?
thank you for your reply, and your shoulder :o) I promise only to lean very gently. I might try some heat, it's hard to know what to do for the best isn't it? If you use cold when it should be hot, or the other way round, it makes it worse, so at least hearing from you that heat helps, means I can try it!!
I have that pain around my thumbs too, how annoying is it!! Just when you think you can do something, your thumb joints stab you. Does your's end up feeling like a bruise after the initial pain has subsided?
stress is a major player in my life right now, the ex is having us repossessed so I have no idea where we're going to live, I know it makes it worse, but I just can't do a lot about it just yet. It is definitely related to how much sleep I get as well, when I first went on the amitryptolene I had my first whole nights sleep in years. Ex had the kids for a week and I felt so much better. I was still in pain, but I could handle it much more effectively.
I know exactly what you mean about looking ok, so you must be ok. It's so difficult, because you can't keep saying how bad things are, not if you're not a complainer, and it gets embarrassing to have to keep saying it too.
We sound very similar, my flare up started slowly and then hit me so hard I couldn't even walk. The pain was more intense than anything I have ever felt before, it scared me.
I can't let anyone else have my little girl for any length of time because of her epilepsy. The ex can't deal with it, so my older daughter gives me a break in the school holidays when things are bad. I find that hard to do though, she's 16 and shouldn't be burdened with me and her sisters problems. I usually compromise with a weekend, and that does help.
Thanks for the reply, and I hope you get some relief soon, it does seem like a never ending cycle sometimes doesn't it.
My heart truly goes out to you. I have pain as well. I'm on that meloxcam too. I take 15mil a day. It did help with some of the stiffness but the pain is still here. I too have the thing with my thumbs. I take other meds as well. The rheumy thinks I have RA or some auto-Immune disorder.Hopefully things will get better for you. If you need to talk or vent please feel free. We're all here to help you and be a friend with extra extra extra long arms and shoulders to wrap you up and lean on. Lol.............Take Care and Gentle Hugs!
With our condition it is vital to get good sleep, without it we spiral downhill very very fast. Then you can't get a handle on the pain and then life is very difficult at best. I know what you are going through as I have some stressful concerns that are out of my control and they constantly put me backward in my recovery. Knowing that I am not alone is comforting however I must admit I am angry with the traditional medical field as most doctors still believe this is a condition that is not only "just in our head" but it can be controled with motrin or advil. I truly wish these naysayers could live in our shoes for just one week. There would be major breakthroughs in treatment if that was possible :-)
Keep thinking positive as there is always a better day ahead even though it looks cloudy right now. Take Care.
I found the same with the meloxicam, it does help, but the pain is still there. I saw the doctor again this week, and she said that even though I tested negative for RA, apparently I might still have it, so I'll have to wait and see on that one. My thumb went off into overdrive last night! It woke me up - now I've had muscle tics before, but nothing like this!! It was going 19 to the dozen!! It's still twitching now, so I don't know what it thinks it's doing lol.
I totally agree about the doctors. Last time I went, I was told not to fall into the trap of considering myself disabled!! I've had this for a good 15 years now, so I think I might have done that by now if I was going to!! And what am I then? If I can't walk, use my hands and am in constant pain, what is that if not disabled?? This time, I asked her for some kind of support so that if it gets this bad again, I can at least get my daughter to and from school, because I can't drive at the moment. She wont let me have a crutch because she says she'll never get me off it. I know they're busy and deal with a lot of hypochondriacs, but surely having coped with it for so long I can't be put into that category. It makes me feel very much alone with it.
I'm very much a cup half full person rather than a cup half empty, so I know things will get better. Once the summer comes and with it the warmth, things will get better again.
My apologies for not answering sooner. I've been having a horrible time of it, but I see a faint light in the tunnel, maybe..:) Your positive attitude made my heart smile, it's dam hard to find anything positive about this DD.
Here lately I've gone from using my cane to using the walker some, then back to the cane. My daughter came in during Spring break and spent the week with us. I enjoyed her and the kids so much, and I pushed myself so that I could spend time with them, and now I pay for it. But it was so worth the pain to have them here. The shoulder is still offered anytime. Take care of you.
I to have a lot of pain in my hands and feet as well as rest of body .It seems to be more noticable in smaller joints .Hands and feet and spine joints every little movement is painfull.The top of my neck also very stiff and painful.A couple of dothep tablets morning and night ,makes it slightly more bearable.And i take a few panadine forte ,but they dont stop the pain though
But i have always managed to get up and get moving.I stopped going to chiropractor years ago as it was to painfull.It is slowley getting worse .i cant have a firm hand shake as it is very painful.
I saw a lady on mystery diagnosis last year she had all the fibro symptons for about 16yrs to find out one day she had mytral valve prolapes .
Can you stand cold on your hand eg can of drink .
Sorry for the long time before I replied, but I have a little girl with epilepsy, and she's been very unwell, I had to call an ambulance the night before last, but she's ok now.
I'm so rry to hear you've been suffering so much, it just controls your every thought when it's bad, doesn't it? But I am also really glad I made you smile, nothing like a smile to make you feel better :o)
It must have been hard for you to have to use the walker, I think it puts us back psychologically as well, it just makes you feel useless, but great news that you're back on the cane, that's a definite step in the right direction (lol, excuse the pun)
At least the pain is for a reason!! Having that family time is so worth it!!
I have to say, I've been feeling quite a bit better myself over the last day or so, I've gone and jinxed myself now haven't I !! I'm getting some much needed help with my divorce, and my horrible ex. If my friend can do what he thinks he can, we may not end up with no home after all. So I have a glimmer of light at the end of the tunnel too.
Rest up now, get yourself better, and thank you for your support.
My hands and feet are definitely the worst at the moment, I've never had it so badly in my feet before, it really got me down, because as long as you can walk, you can still at least get about. The pain is much worse this time for me, and I do get that stiff neck and back. My hip seems to suffer more than the rest of me as well. I used to do a lot of stretdhing first thing in the morning, as advised, but it made me so much worse, then I found out I had hypermobility syndrome, so by stretching, I was making the whole thing worse anyway!! lol. It's hard to know how far you're supposed to stretch, so I just do a little bit.
I've been to the chiropractor, OMG, it is soooo painful!! It was the last time I went that I found out I had the hypermobility, but he hurt me so much clicking and stretching me about, that I never went back. I have no idea if he cured the bits he was working on, because the fibro flared so badly afterwards, I couldn't move. Ooh, I know what you mean about the firm handshake, makes you wince doesn't it!!
I haven't heard of mytral valve prolapse, so I'm going to go and look it up.
I do have more sensetivity to temperature, I find very cold things painful. I've never been able to use ice packs, but I don't know about a cold can of drink, I'll have to try it - I may not be back for a while though, because I'll have to get one out of the fridge in a shop, and I could well be done for shop lifting lol.
I wish you all the best an better health..
It was only by accident i saw the Mystery Diagnosis with the american lady and mytral valve prolapes .Her symtons as she spoke about them where so much like mine and fibro sufferers .My wifes Aunty has fibro i found out recently when i dropped in for a surprise visit .she also finds ice and cold things very pailful.
I got up late thismorning my wife just cooked bacon and eggs, Had that and sitting here writing this, i am trying to hurry as( my mind is telling me ) my buttocks is paining and i want to finish and get up .You would know the feeling im sure.
I am back HA HA, just had to get 2 cuishions to sit on .I couldnt stand the hard seat any longer.
Interesting about the chiropractor having the same affect.I would have to be physicly dragged in by the neck now to see one. And i used to see them regular years ago
I did some neck streches and they upset things .so i am going to do it more gently for a try.
Do you see any benefit in having massage . I feel that i could live with massage on an hourly bassis LOL.$$$
I am trying powders and pills by Mannatech fifth week now with no improvement but i will still keep taking it for a few months yet . If that doesnt help i will try AIM Barley Life powder.
This fibro has realy affected my work .
mmm, egg and bacon, the perfect weekend brekky. Your wife has obviously heard that the way to a man's heart is through his stomach lol, well, that and 2 cushions of course!!
I can't do massage. It is just too painful. Mind you, every time I've gone, Ive been expecting that gentle go to sleep type massage, and I always end up with the next in a long line of artists that have perfected torture whilst being paid. I think maybe I should go for aromatherapy massage, that sounds gentle. I have heard plenty of people say they find massage helps, so it must just be that I'm going for the wrong one. Last one I had was a really sweet Thai girl, sweet that is until she managed to get her bony little fingers underneath my shoulder blades - eeeeuuuugh, it made me feel sick, that just wasn't natural. And she knelt in my back too, I was crippled for days - ROFL. Not so therapeutic!!
I can't work any more, but I have enough to be getting on with at home, so I can't say as it bothers me too much. It used to, but now I can't get through an entire day at home, it doesn't seem to be so important any more.
I hoep you get some good healing massage, just make sure you find out which type you're getting!! lol
I'm so sorry to hear about everything you are experiencing. I've been down the same road with finances, medical and housing probs. and it is quite stressful.
Have you tried warm water aerobics? This is low-impact and can help with the stretching and muscle aches. There is also a type of massage they can do with heated rocks (believe it or not). This might be a thought as it's hands off.
You should be able to apply for benefits for both yourself and your child, so please do check that out. If you have an attorney, they can also do an emergency hearing for spousal support, which may save your home.
I will pray for you and hope that everything works out. I know it's a difficult time, but we are here for you. Please keep in touch and let us know how things are going for both you and your daughter.
I haven't tried warm water aerobics, now that's a really good idea! I'm definitely going to see if it's done anywhere round here. Thank you!! I have a friend who does that hot stone massage, I had totally forgotten, you're going to get a gold star in the good deeds department today :o)
I am trying to get the benefits side of things sorted out. It's just making myself do it sometimes that's the problem. I'm seeing my solicitor tomorrow, so hopefully I should come away with some better news.
Thank you for the support, I can't believe how lovely you've all been, it's really helped lift my mood.
Hi there Fable, I was just reading the entries and read that you have a epileptic child. I do too. He is 7 yrs old and takes 3 different types of seizures. We've been dealing with this issue for 5 years. He also has Lennox Gastaut syndrome which has it's own set of problems. Have you ever heard of respite care? I live in Ontario, so I don't know if you can get it where you live. Through my sons disability services and children s care access centers and family respite, I was able to get my son approved for respite funding. This allows you to hire anyone (ie: family/friend/ agency person) to come in for a few hours a week to relieve you and either spend time with your child in the home or take the child out and gives you the time needed for you.I, too, have fibromyalgia. I have had it for about 6 years or so.My son has to wear a helmet everywhere he goes. He also take night time seizures.He is on 4 medications right now just to try to control his seizures.There is a huge chance of him maybe having to have corpus colostomy.But that is on hold for now.If you can get respite for your daughter,it would be of great benefit to both of you.I'm sure that you have been through the wringer with her, but if you'd like to just talk, I'll be here. I hope this info helps.I get $3500.00/year for respite.I pay out then get reimbursed the money.This is probably different to where you live at. Take care.
Hi, my daughter is 7 too!! She has drop attacks, partials, absences, tonic clonics. She nearly had to wear a helmet, but the drops eased off a lot, and she doesn't have them so much now. Her seizures are mostly at night, but she has a lot of absences during the day when she just zones out. It makes school difficult for her, not because of the other children, but learning isn't easy when you disappear off into your own little world like that. She takes Tiagabine for the drops, and Lamotrogine for the seizures. She just recently had VNS surgery, I posted about it on the epilepsy forum. I'm in the process of finding out what I'm entitled to. My ex always earned a high wage, so I never needed to worry about benefits, but now he's gone and doesn't really want to give us so much money, I have to see where I can get some help too.
I've often thought about respite, and now she's older, it might be worth a rethink. Thanks for posting about it, I had completely put it out of my mind. It's not something you need so much when you're married!!
Hey, when I got my diagnosis of fibro I knew I would get disability because it is a disabeling condition. Your Rhuemy knows this. Please don't feel bad about it. Becoming disabled has helped me tremendously to get the rest I needed. I don't know if you are female, I assume so, but we wear so many hats and we always put others before ourselves which I'm sure you do with your child. You and your child are entitled to finacial help for disabeling conditions and this will give you a little less stress. I am currently reading a very informative book I think all peeps with fibro should read. I hope it helps you. It's called Fibromyalgia & Chronic Myofascial Pain A Survivor's Manual by Devin Starlanyl & Mary Ellen Copeland. I have seen it mentioned in this forum by several people. Good luck!!!
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