JKCnWv9 years ago

Hi PetulaW, I don't have anything as serious as your cancer, which I hope that you will be healed, soon!! But along with my Fibro, I also have Sleep Apnea, Dystonia, and the mistake of a dumb doctor who caused an abscess on my spinal cord. But, with all of these problems I think dealing with depression has become very serious, and I hope that I can get it under control. But, I get some relief from my Fibro by using a heating pad, called a Thermaphore. If it wasn't for it, I'm not sure that I could deal with these things. If you have any questions, please don't hesitate to ask. I hope that you will overcome the cancer, I know that must compound your pain.

Ktatmolehole in reply to JKCnWv9 years ago

Hi I just read your post and it says you suffer from dystonia. The letter I received after my diagnosis says that I suffer from dystonia as well as fybro and a few other things but when I asked the doctor what does that mean he didn't really answer me. I hope you don't mind me asking what is it? What have I got?

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Hidden in reply to Ktatmolehole9 years ago

this will get you onto the nhs website that explains Dystonia.

NHS.choices/dystonia

I hope that you find this helpful .

sue xx

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PetulaW in reply to JKCnWv9 years ago

You're right about that. Even those who also have multiple myeloma are confused when I say I'm in pain. I forget that I'm "unusual."

I know what you mean about the depression. I remember what it was like not to be on meds. Some also help with the pain. I was so tense from being anxious and depressed. Now it's "just" regular, so to speak, days.

Thanks for commenting and being here!

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wallflower_fairy9 years ago

Hi Petula W,

I'm sorry that you suffering with you so much at the moment - it must be incredibly challenging have to deal with more than one disease and people who don't understand the complexities involved with this. I hope that you get well soon.

Loads of people have multiple diseases on here, although no one person is exactly the same.

Just as a matter of interest to give people an over view, in my experience the main ones that people suffer from alongside Fibro (this is just a thought, I could be wrong) - Lupus, RA, other forms of arthritis, Hypermobility, osteoporosis, ME/CFS, depression (which would be alongside Fibro - some have expected in part, the cause or a result I suppose), and yes I've noticed a few people also have Sjogren's. Fibro can sometimes be secondary to some of these conditions, in other words, something like Lupus or Hypermobility might cause Fibro. But like I said before, everyone is different.

I don't know if you've ever heard of the Spoon theory - some people use it explain to their friends and family what it means to have certain conditions. I think it's genius. You might find it helps you.

Thanks again for helping me on my post.

wanderingwallflower xx

wallflower_fairy9 years ago

Forgot to paste the Spoon theory!

Below.

butyoudontlooksick.com/wpre...

PetulaW in reply to wallflower_fairy9 years ago

I read this and it makes so much sense. Thanks for giving me the link. I totally understand now and it even helped me to understand myself some more. Thanks again!

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wallflower_fairy in reply to PetulaW9 years ago

No probs I'm glad it helped,

wanderingwallflower xx

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TheAuthor9 years ago

Hi PetulaW

I sincerely hope that you are feeling as well as you possibly can be today? I have Chronic Asthma and COPD to go along with Arthritis, crippling Migraines and my Fibro, and I can honestly say that it is not easy most of the time. I have so much medication to take that I have a chart for it all!

Somehow we always manage to get through the day, I genuinely believe that human nature is an urge to strive for more and not just settle for existence. So we go on and on ....

I want to wish you all the best of luck with your illnesses and your treatments.

Ken x

PetulaW in reply to TheAuthor9 years ago

Thanks a lot for the encouragement. I have reached a rough patch lately with the change in my meds to stronger dosages of chemo. Going through another adjustment phase. Oh, the migraines! With the new meds I have a low-grade fever most of the time and a headache looming behind the surface ready to turn migraine at any minute. I just figured out today that even though I don't feel hungry and don't want to eat my head needs to eat. Too little food = even worse headache. Can be so debilitating.

Again, thank you very much.

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TheAuthor in reply to PetulaW9 years ago

I know exactly what you mean about the the migraines. Somebody on another forum told me that migraines were the worst pain she had ever encountered. They have been a scourge of my life as well. So you have my complete sympathy and empathy.

Please look after yourself

Ken x

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Shadows-walker9 years ago

Hi I also have sjorgrens , reactive artherist ,fibro ,chronic fatigue and UCTD / SLE I am sorry you have blood cancer as well it must be arwful for you I have learnt to take things a day at a time ,I pushed myself to hard and have been off work since jan, I also use the spoon theorie it has made a great difference to my well being ,I now listen to my body and not my head which is constantly telling me what I must do I have learned to use the off button , and with your sjorgrens I have been given a tip which I will share with in case like me you hadn't heard of it aloe Vera tooth paste to ease your gums , I have been told at night not to rinse away tooth paste which I have prescribed and to use the aloe vere tooth paste after lunch good luck with everything ,this web site has been my saving grace I have people here who understand where I am in life ,with the exception of a few people in my day to day life I have not , my dogs are my constant companions and they give me unconditional love , my children live away although my youngest daughter is with me hopefully till September ,I am learning exceptence of my limitations ,and to ask for help. take care Christina x

PetulaW in reply to Shadows-walker9 years ago

Oh yes! I had to learn the hard way to listen to my body. I used to be a perfectionist (I guess that makes me recovering, huh? LOL. At least I'm recovering from something!) and having to tell myself NO and forcing myself to rest, lay down or take a nap was like trying to push a cotton ball through glass.

I hadn't heard of using the aloe vera toothpaste, I'm going to have to try that out. Thanks!

I also don't have family nearby. My oldest daughter lives not too far and she's taken on the burden of being my caregiver as much as she can since she's finishing up a Chemistry/Biology degree, raising her young daughter with the baby's father... Sometimes I feel guilty, but I know I really need the help.

One day at a time, right?

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denvajade9 years ago

Hi there i can relate to what you are saying i have whats called simmering myeloma, ra, fibro, depression and sphincter of oddi dysfuntion which has caused me to look nine months pregnant, cant eat meat or fats and get diarreah,some days i wonder how i am going to keep going, really struggle.

PetulaW in reply to denvajade9 years ago

My myeloma simmered for almost 20 years! I had five months of treatment at the time and it wasn't until this past December when the cells started showing themselves. I've been recently classified as progressive myeloma and I really, really don't like the way that sounds.

Stomach issues are so hard and annoying. I understand the depression and extremely bloated stomach. It's hard to put up with, but just take one minute at a time.

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pineapple_head9 years ago

Hello, I'm very sorry to hear that you are battling with cancer. I wish you all the best and courage to keep your mental and physical strength. I hope you have family and friends around you.

Running alongside fibromyalgia, I have rheumatoid arthritis, spinal stenosis, sjogren and I had all my adult life endometriosis. It has been tough but I still manage to go on my bicycle!! My bicycle keeps me sane and makes me feel that I am normal, ie without any disease. I have fantastic friends, a very good GP and rheumatology team. I have 2 smashing part time jobs which makes me feel fulfill. I work 25 hours a week and it's enough. But I don't have something as serious as you. I can't give you courage but as part as this group, you will have all my support and there are really fantastic people in this group. Keep us posted please and take good care of yourself.

wallflower_fairy in reply to pineapple_head9 years ago

pineapple this is a really great, positive post! x

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pineapple_head in reply to wallflower_fairy9 years ago

I forgot to say that I also have IBS! Thank you Funkyfairy for your comment. It's very much appreciated

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PetulaW in reply to pineapple_head9 years ago

Thanks for this! You give me hope. I can't image working outside of the home or riding a bike... I do hope I'll want to do those things again one day. Thanks for your support.

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pineapple_head in reply to PetulaW9 years ago

You will one day!

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bluebell999 years ago

Hi PetulaW

Yes, I have a raft of autoimmune conditions, lupus, Sjogrens, antiphospholipid syndrome, (blood clots too readily), autoimmune hepatitis, and hypothyroidism and unfortunately they all do tend to go with the fibro. I also have IBS, UTIs, osteoarthritis, asthma and other allergies. I am in remission for renal cancer, and have had both knees and right hip replaced. I have spondylolithesis in my lumber spine, and osteoporosis

Recently I have experienced phlebitis, double vision, chest infections and problems with my jaw. I have rotator cuff injury in my right shoulder, costochondritis and fibro fog!!!! No wonder sometimes I feel like I am falling to bits,

This site keeps me sane and on the low days, I come here for a little fun and light relief. Also to receive advice and help, and it all keeps me battling on.

Through all the many years of acquiring these diseases and conditions I have found my husband and two best friends a great comfort and support, so I am really lucky.

It also helps to have a positive attitude as you have shown in your post.

Hugs

Xx

PetulaW in reply to bluebell999 years ago

Oh I forgot to mention that I am so glad I haven't had to deal with blood clots. That has to be scary. When they first told me to beware of it I was really paranoid, but now I just make sure to check during my regular lotioning etc.

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PetulaW9 years ago

Wow, I can understand feeling like you're falling to pieces. You have quite a lot going on, but I'm happy to hear you have that support.

Concerning your jaw, do you know what is causes that pain? Recently my jaws have been acting up. Sometimes just to open my mouth to eat is painful and that's when they feel swollen or in pain so I suppose that can be sjogren's and fibro playing together. So many symptoms to pay attention to so that nothing serious gets by.

Thanks a lot for sharing with me. I will actually have to look up some of what you're dealing.

Shadows-walker in reply to PetulaW9 years ago

Hi petula you may find your ache in jaw is sjorgrens , check for stones in salvia gland . Apparently it's quite a common symptom according to my rhummie. X

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PetulaW in reply to Shadows-walker9 years ago

Hmmm stones in saliva glands. I am definitely going to look into that. That's something else I haven't heard of.

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PetulaW in reply to Shadows-walker9 years ago

I've checked on the saliva stones and I'm good in that area. Thanks for the information. I like being in the know.

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