Does anyone on here suffer from Fibromyalgia?

[KristinaB]

I have Chronic fibromyalgia as well as neuropathy of the right side. Add to this a dairy allergy and total deafness. I am also allergic to a multitude of medicines and other things. All the medicines that the rheumotologist and any other doctors wanted to give me, I can't take due to one allergy or another. I have to deal with the pain and discomfort of the fibro and neuropathy on my own.

I am now walking with a rollator and still fall at least 2 times a day. My right kneecap slips out of place at least 3 times a week. The doctor thinks I may need to move to a scooter or wheelchair soon.

I deal with all of this and I am still home schooling my 2 teens, am primary care taker for my mother, who has a terminal illness due to a hospital mess-up, and I am also driver for my mother-in-law. My hubby was also born with brain damage and I help him a lot.

For me, prayer is everything. It's doesn't take all this away, but it does calm me enough to make it through the day. I have not gotten a full night of uninterrupted sleep in over 6 years. I wake at least 3 times a night. Most times, it's to put my kneecap back in place.

 

[Colleen1]

I have Chronic fibromyalgia as well as neuropathy of the right side. Add to this a dairy allergy and total deafness. I am also allergic to a multitude of medicines and other things. All the medicines that the rheumotologist and any other doctors wanted to give me, I can't take due to one allergy or another. I have to deal with the pain and discomfort of the fibro and neuropathy on my own.

I am now walking with a rollator and still fall at least 2 times a day. My right kneecap slips out of place at least 3 times a week. The doctor thinks I may need to move to a scooter or wheelchair soon.

I deal with all of this and I am still home schooling my 2 teens, am primary care taker for my mother, who has a terminal illness due to a hospital mess-up, and I am also driver for my mother-in-law. My hubby was also born with brain damage and I help him a lot.

For me, prayer is everything. It's doesn't take all this away, but it does calm me enough to make it through the day. I have not gotten a full night of uninterrupted sleep in over 6 years. I wake at least 3 times a night. Most times, it's to put my kneecap back in place.

I'm sorry to hear you are struggling. Yes, going to God in all seasons of our lives can be extremely beneficial. He's a good listener. You have an incredible amount of responsibility and it is'nt easy. I too do not sleep through the night and some nights can be worse than others. This makes it rather difficult to deal with chronic illness. Thanks for sharing. Take care.

 

[jannet1]

I think you need to consult a physician for better advice and treatment...

 

[KristinaB]

I think you need to consult a physician for better advice and treatment...

I have seen multiple doctors, and specialists and still see them on a regular basis. They are unable to give me anything for pain due to my numerous allergies. The allergy problem is one I have had to deal with since childhood. There are a lot of things I have to do different due to allergies. My doctors are constantly on the look-out for anything we can try. I have tried some and almost lost my life, therefore, they don't want to take too many chances. For me, I will take the pain just to be with my family. I will not accept death just to deal with the pain.

 

[Colleen1]

I have seen multiple doctors, and specialists and still see them on a regular basis. They are unable to give me anything for pain due to my numerous allergies. The allergy problem is one I have had to deal with since childhood. There are a lot of things I have to do different due to allergies. My doctors are constantly on the look-out for anything we can try. I have tried some and almost lost my life, therefore, they don't want to take too many chances. For me, I will take the pain just to be with my family. I will not accept death just to deal with the pain.

Hi, I just wanted to encourage you. It isn't easy to live with pain. I too can not take many medications and many of the professionals I've seen know less about the illnesses I have than I do. As well, it is hard to get funding for alternative treatment. Now it seems even harder to get funding and help even if the doctors are in support of it. I empathize with you. It is not an easy way to live. Take care.

 

[St. Helens]

I was just diagnosed with Fibromyalgia. The doctors cannot find any other condition that is causing the pain. I am healthy and physically fit yet on some days I feel like I have been run over by a truck especilly just before it snows or rains.

 

[Colleen1]

I was just diagnosed with Fibromyalgia. The doctors cannot find any other condition that is causing the pain. I am healthy and physically fit yet on some days I feel like I have been run over by a truck especilly just before it snows or rains.

I was physically fit but continued gaining weight cause I was getting progressively tired and it took many years in my case to diagnose my condition but I have all 3 of those illnesses so it can get complicated. I have Chronic Fatigue Syndrome, Fibromyalgia and Chronic Myofascial Pain Syndrome and I believe in the theory that these illnesses are all different. One treatment etc may help one illness but hurt the other. This includes change in temperature. I do not do well with cold. I need to stay warm or my pain level increases significantly.

 

[St. Helens]

Junk food will make me feel terrible. I pretty much stick with minimally processed foods and high fiber foods. Low sugar Orange Juice has brought a lot of improvement.

 

[bbbbbbb]

I was just diagnosed with Fibromyalgia. The doctors cannot find any other condition that is causing the pain. I am healthy and physically fit yet on some days I feel like I have been run over by a truck especilly just before it snows or rains.

If you can find a fibromyalgia support group to attend I highly recommend that. My support group has been really great. Some of these folks have had fibro for twenty years or more and have a lot of experience with it. It seems that what works for one person may not work for another. It is mostly a matter of trial and error to find something that really helps.

I am so grateful that fibro is about the only major thing wrong with me. I am also grateful to God for allowing me to function well. I am now in China teaching the Bible, thanking God from the depths of my heart for this opportunity to serve Him. Sure, I am in pain and my sleep is dicey, at best, but God gives grace as He provides opportunities. I take one day at a time and rely heavily on the prayers of friends. I will be praying for you.

 

[ClairEuk73]

Hello everyone,
I was diagnosed last year with Fibro, and I also have arthritis in my spine which I've had for over 10 years. I am still figuring out what I can and can't do, which has been emotionally challenging for me as I have a 5 year old son to entertain, had to give up being a special constable, can no longer volunteer at the local nature reserve or the local stables, or do my own gardening. I'm also studying from home for a degree which is really hard work on days that all I want to do is lie on the sofa. I feel like a 70-year-old when I'm only 38.
But, I am grateful to God as there are many, far worse things I could have. That's not to say I think people should just 'deal with it', believe me, a 'specialist' told me I had to learn to live with my arthritis and that really upset me. I totally understand where everyone is coming from and it's good to know we can all offload to each other when times are tough and we feel rotten. God has given us each other
Bless you all

 

[mamawolf]

i have fibromyalgia was diagnosed with it in 2009 it is the worse thing i cant realkly work but have been denied disability, s oi must push on and try and work and prove to them i cant hold a job if i cant show up cuz i cant move cuz i hurt too bad

 

[ClairEuk73]

i have fibromyalgia was diagnosed with it in 2009 it is the worse thing i cant realkly work but have been denied disability, s oi must push on and try and work and prove to them i cant hold a job if i cant show up cuz i cant move cuz i hurt too bad

I've just applied for disability for the third time, both the jobcentre and my doctor have said I should get it

 

[Colleen1]

Hello everyone,
I was diagnosed last year with Fibro, and I also have arthritis in my spine which I've had for over 10 years. I am still figuring out what I can and can't do, which has been emotionally challenging for me as I have a 5 year old son to entertain, had to give up being a special constable, can no longer volunteer at the local nature reserve or the local stables, or do my own gardening. I'm also studying from home for a degree which is really hard work on days that all I want to do is lie on the sofa. I feel like a 70-year-old when I'm only 38.
But, I am grateful to God as there are many, far worse things I could have. That's not to say I think people should just 'deal with it', believe me, a 'specialist' told me I had to learn to live with my arthritis and that really upset me. I totally understand where everyone is coming from and it's good to know we can all offload to each other when times are tough and we feel rotten. God has given us each other
Bless you all

Yes, this illness can be frustrating and have it's challenges. It is hard giving up the things we love to do and everything gets accomplished much slower than before. Like you say we can still find things to be thankful for and that encourage us. God bless!

 

[Colleen1]

i have fibromyalgia was diagnosed with it in 2009 it is the worse thing i cant realkly work but have been denied disability, s oi must push on and try and work and prove to them i cant hold a job if i cant show up cuz i cant move cuz i hurt too bad

Yes, the whole issue of disabilities and finding appropriate effective treatment can be like walking in a minefield. It really isn't a fun process at all. You're not alone. God bless!

 

[Colleen1]

I've just applied for disability for the third time, both the jobcentre and my doctor have said I should get it

It's getting harder and harder to get disabilities here too even with doctor support. I tried to get additional funding for alternative treatment from a disability agency that wasn't paying out and they refused even with doctor support and knowing that I get severe side effects with many meds. It's tough out there. I would suggest you study the policies and legislations and find out exactly why they refused you and fill in the gaps that are needed. I empathize. It's just not an easy process especially when we feel so ill.

 

[ClairEuk73]

I'm sorry they have treated you that way, Colleen. Whoever makes the decisions on these things obviously has no experience or compassion.
I was turned down for the second time (the first time I wasn't properly diagnosed so didn't put all the symptoms down) on the basis that I could walk for one minute before feeling severe pain/discomfort - WITH a stick. Now since the guidance notes say I should be able to get it if I can only walk a short distance, I wonder how far they think I was getting in one minute??!!:o
I've now learned to put down how I feel on the very worst days, when getting off the sofa/out of bed is a struggle. Not sure what I will do if they turn me down again.

 

[mamawolf]

I have tried savella and cymbalta. I am allergic to both. I am mother of 3 kids 2 of them have special needs of their own I have refused lyrica because I have seen a few ppl on lyrica and they cant function, I am sorry even if the medicine helps I need to be able to function to take care of my children. Their dad is not much of any help except he put me on his phone account my bf helps where he can but as they are my kids the responsibility lays on me

 

[Colleen1]

I'm sorry they have treated you that way, Colleen. Whoever makes the decisions on these things obviously has no experience or compassion.
I was turned down for the second time (the first time I wasn't properly diagnosed so didn't put all the symptoms down) on the basis that I could walk for one minute before feeling severe pain/discomfort - WITH a stick. Now since the guidance notes say I should be able to get it if I can only walk a short distance, I wonder how far they think I was getting in one minute??!!:o
I've now learned to put down how I feel on the very worst days, when getting off the sofa/out of bed is a struggle. Not sure what I will do if they turn me down again.

Yes, accuracy of assessment, forms and being aware of policy is sooo very important when it comes to disabilities. Thank you for your sentiment. It's nice to have other people around who understand. I have Chronic Fatigue Syndrome, Fibromyalgia and extensive Chronic Myofascial Pain. It took over a decade to diagnose and the inaccuracies there and the fact that the majority of GP's where I was living didn't believe in Chronic Fatigue Syndrome certainly didn't help. For me getting diagnosed was a difficult ordeal and going contrary to the only clinic where I live and standing up for what I needed and being treated well has created inconvienance but has been necessary to obtain the help and funding I so desperately needed and has helped create awareness among certain groups of professionals. I still struggle with the system but being validated can be so very beneficial to us who suffer with these illnesses.

 

[Colleen1]

I have tried savella and cymbalta. I am allergic to both. I am mother of 3 kids 2 of them have special needs of their own I have refused lyrica because I have seen a few ppl on lyrica and they cant function, I am sorry even if the medicine helps I need to be able to function to take care of my children. Their dad is not much of any help except he put me on his phone account my bf helps where he can but as they are my kids the responsibility lays on me

So very difficult. I empathize.

 

[RuthD]

You sure have your plate full. I'm so sorry you are having to deal with so very much. I am praying for healing of you and family. God bless you dear heart.