fibromyalgia sufferers

my wife suffers so bad that i gave up work to care for her,she is only 41 and feels so alone with this conditition,she is in pain everyday which go from just bearable to agony all over her body,does anyone else have fibromyalgia this bad?as she feels she is the only one with it this bad.xx

[Hidden]

Mine fluctuates from being bed bound to being insufferably bouncy... But there are plenty of people on here who suffer worse than me. Has she had a medication reveiw lately as there are so many meds out there and it's not a one suits all condition... My meds are just being changed and I am in more pain than usual and they are not working for day pain so its going to be another trip to the GPS soon. I have tried plenty of day meds and until recently .. I have had fibro for 23 years I was going along nicely then bang my day meds just stopped working again and its time for trial and error meds again until I get it back under control , my night meds are perfect.. please reassure your wife she is not alone,,, if you feel a med reveiw might help her please go to the GPS , we fibromites tend to have to use the GPS far more than we would like but we need to go... If you can encourage your wife to read or post on here she would be almost welcome as are you, and can I just say how lucky she is to have such a supportive husband

VG x

[Hidden in reply to Hidden]

thanks for your reply my wife can,t take meds because they conflict with her own medication,we have got a helpful g;p thankfully,and are on waiting list to see a specialist ,good luck with your med trials.xx

[Saskia]

Hi,

She certainly isn't alone. Try to persuade her to come on this site and read the blogs. Then she will have an inkling of what we all go through. It is a condition which fluctuates and I have found that I just have to "go with it" which makes it very hard to plan anything. It is just a case of managing day by day, sometimes even hour by hour.

You sound like a very supportive husband and she is lucky to have you as you obviously care very deeply for her. My husband is wonderful too and we just muddle along. I was diagnosed a month before I married and I was 48 but the rheumatologist said that I had had the condition for several years before finally being referred to him. I am now nearly 59 and Fibromyalgia has robbed me of my former life but I have reinvented myself! Despite being in constant pain, with no energy I enjoy life much more than I ever did when I was working, I can take time to smell the flowers admire the trees and nature in general and we have 2 rescue dogs now who give me so much love and companionship. We also have 2 cats. I have always had cats but could never have a dog when I was working so giving up work because of my health has enabled me to fulfil a lifetime ambition of owning dogs.

Bless you for taking the time to come on here and share your concerns.

Keep in touch with us and let us know how you are both getting on.

Love and hugs to you and your wife. Saskia. XX

[Hidden in reply to Saskia]

thankyou my wife was only diagnosed 4 weeks ago.was a massive shock,we are trying to get on with dialy life as best we can,just like yourselves,as a partner i cannot imagine how the pain feels,but help in different ways,we are even looking into getting home modifications to make life easier,won,t take pain away but will make life easier,my wife will sign up when she feels ready,thanks for your reply,and best wishes to you both.xx

[Saskia]

You are very welcome,bryjt,

I am sure you must still be in a state of shock. It takes take time to come to terms with the diagnosis. I carried on working as though nothing was wrong, as I didn't understand the condition, but in the end just "caved in' and had to admit defeat and give up working. I found that very hard to deal with at the time.

Take things very slowly and don't be afraid to go back to the Dr if you feel your wife needs different medication. Nothing gets rid of the pain, in my case, but it just takes the edge off things a bit so I can at least get out with the dogs most days. Other than that I don't do very much. Then on a reasonably good day if I have a little bit of energy I overdo things and end up setting myself back for a few days.

I attended a pain management course at the hospital which helps you to understand pain, depression etc a bit better and they encourage everyone who has a chronic health condition to "pace yourself" but that is a very hard thing to do. With me it is still all or nothing!

Your wife will find a balance but it will take her some time. Having modifications to the house sounds like a very good idea. We haven't done that yet but may well have to in the future or possibly we may have to move. At the moment I hobble up and down the stairs and probably look about 90 years old some days!

Take care of each other,

Saskia.

[jacksie]

yes i totally agree,get her onto this site,it isn't a cure but it's the eqiuvelant of stepping out ,and is very rewarding,she can find comfort knowing she isn't alone,she can compare anything even if it's weird,you might say to yourself oh that's what i'm experiencing,so you'll find your not alone,plus you can get on to other sites and gain knowledge from that, when i was diagnosed i had never heard of it i couldn't wait to get home and get it up on the computer,i couldn't believe it it was like a mirror of myself,since then i have found humor and comfort,keep well jacksiex.

[phlebo123]

Welcome to you and your wife. She is so lucky to have such a caring and understanding husband. My husband does not understand at all and does very little to help me- I have given him information to read but he still expects me to be able to do the things I used to do and gets angry and upset when I can't. Now she has a diagnosis (did she see a rheumatologist? -- was she given any information?) It will probably be helpful to read as much as you can about fibromyalgia. The hardest part for you both will be acceptance and for her to learn to manage/pace herself - I found the booklet "the pain toolkit" on pain toolkit.org was very useful in learning about managing pain. Do you have children? If so try and involve them in helping out. Try and encourage her to do some gentle exercise when she feels up to it (I take the dog on short walks, gentle yoga) and let her do things she enjoys (I do baking, jigsaws). Did she used to work or go out with friends? Maybe ask them to pay short visits so your wife does not feel isolated. It is often difficult because it is an invisible condition and family/friends find it difficult to understand - you could ask them to read "the Spoon Theory" on butyoudontlooksick.com It is said that 4% of the world have fibromyalgia so please let her know that she is definitely not alone. I am sure with your great support she can learn to manage fibromyalgia - it is hard work but many of us on here are learning how we can live with it - I call it " my second life" . If there are any questions that you or your wife have there is always someone on here who probably can help out. Send your wife my best wishes. Take care xx

[Aashaw22]

My Fibromyalgia has got so bad since I lost both my parents a few years back. If I pull a muscle I go into to muscle spasm and can't move. I'm terrified to do or go anywhere. It feels as though we have the flu, very achy and certain points feel like I am being stabbed with a knife. My legs feel like they weigh 100 tons and I also feel very alone although meeting people on FB with Fibromyalgia help. My GP retired and now I haven't even got a doctor who understands this condition. I take painkillers, rub in anti inflammatory gel and use icepacks or heat on the pain. I also see an Osteopath as a massage is good for circulation.