Fibromyalgia

[mike90]

Just wondering if there is anyone else on here who has fibromayalgia or something similar?

I have been tired out and in pain since I was about 13, on and off but it has only been in the last 6 months or so that the hospital decided to take things seriously and scanned me etc. They have told me that I have fibromayalgia, soft tissue rheumatism and chronic pain syndrome. It just seems to be one thing after another.

I am going to be scanned again on the 22nd because they now think that I may have a lymphoma. I am on 10 pills every night and loads more throughout the day and to be honest I am scared. My partner lives with me but works in Norway and he is worried as well. Does anyone have any advice on how best to cope with all this going on? If you can you please either reply on here or pm me? Thank you xx

[Eleanor Rigby]

Hi there ,

first thing, I am sorry that you're having to deal with all this. I know from experience it's really hard and depressing. And I truly hope the results of your next scan are going to be good.
I have a fibromyalgia. I've been diagnose with this at 18 after being on an off the hospital for pain, especially back pain, and legs paralysis for about 3 years.
It was a HUGE relief to be diagnosed and in the same time, fibromyalgia wasn't very well know or recognized as an illness in France 13 years ago.
I had a huge treatment for about 4 years, but things got better with time. Crisis became shorter and less frequent. More than anything, I learned to recognize the early signs of a crisis and how to cope with them.
Please don't give up. I remember that my health problems were really hard to cope with when I was your age, but in the end, now I live pretty much a normal life.
If you want to contact me to talk about it, feel free to do so anytime
Take care Cécile

[mike90]

Thank you... that makes me feel more optimistic about things. I think back pain is the worst I have but it is everywhere. I will let you know what the scan comes up with. Glad that I am not alone in being relieved when they finally diagnose it... I think that the uncertainty is much worse than anything xx

[MamaFugs]

This sounds like a really scary time for you. I hope everything works out for the best.
I have fibromyalgia too. I'm down to just one medicine a day, but there are times when that doesn't quite take care of it. I have found, though, that exercise helps with the pain. Not so much in the short term, but if you can stick with it for a month or so you should start noticing your symptoms easing somewhat. The exercise doesn't have to be strenuous, just walking or light cardio is all I've ever done. I will warn you though, that first month really sucks. lol
Good luck with everything

[mike90]

Thank you. I am being given exercises by physio but they are so sore. The last lot broke my foot well chipped it. What medication are you on if you don't mind me asking? I am on tramadol, paracetamol, dulexatine, pregablin, lortradine, adcal-d3, ramipril, propanolol, felotens XL and various other "as needed" pills and creams etc x

[MamaFugs]

That's quite a list of medicines! I used to be on pregabalin and duloxatine, but now only take the duloxatine.
Are all of those meds from the same doctor?
Make sure to be careful of med interactions and redundant ones (more than one med for the same thing). For example you're on at least two different pain meds as well as one specific for fibromyalgia. If you're taking all three daily, that may be a bit overwhelming to your body. Also they aren't necessarily all helping with the pain when taken at the same time. It seems to me it would be more beneficial to adjust the dose of one to give you better benefit than to keep throwing more medicines at the pain.
I'm no doctor, these are just the things I've found to be true through experience throughout the years.
Take care of yourself and I'm right here if you want to talk.

[Eleanor Rigby]

Originally Posted by mike90

Thank you. I am being given exercises by physio but they are so sore.

What works best for me is swimming and aqua-gym (which I unfortunately can't practice anymore...) but just taking the habits to walk for a while on a regular basis helps (at least, that helps me).
I used to practice Taï-chi and that helped a lot too (unfortunately I can't do that anymore either, I now live in a rural area where I don't have access to those kind of activities).
Acupuncture is also a HUGE help for me. I am lucky enough to have a wonderful practitioner, and for the last 4 years he helped me a lot with my fibromyalgia and migraines.
I know everyone is different, but you may look at that sorts of things (acupuncture, having a light and relaxing physical activity...). That doesn't help much when on crisis, but those are things that may help you regain balance in everyday life and in the end, that can help you managing the crisis better.

Cécile

[mike90]

I am definitely going to look into trying at least some of those suggestions. I love swimming and there is a pool near here, I just lack the confidence to go. Needles are one of my biggest likes so acupuncture is a definite thing to look into. I am going to have to find somewhere near here that does it.

I love walking, but I have real problems with any incline or decline. Stairs are my version of hell. I have size 14/15 feet so even without the fibro I would have problems. I have just had some new furniture delivered that is made from memory foam and it has helped me so much already today. I have almost fallen asleep in the chair.

Thank you for your help with things; as I said before it makes me feel a little better to know that I am not alone xx

[Eleanor Rigby]

Originally Posted by mike90

I am definitely going to look into trying at least some of those suggestions. I love swimming and there is a pool near here, I just lack the confidence to go.

Try to check if there are aqua gym sessions there. That can really help you a lot. And there is no need to lack confidence if you're taking beginners level, chances are you're going to be mostly surrounded with older ladies

Originally Posted by mike90

I have just had some new furniture delivered that is made from memory foam and it has helped me so much already today. I have almost fallen asleep in the chair.

That's wonderful I have a memory foam pillow. That's the only thing I can sleep on when I'm having migraines.
One of the key of living with a fibromyalgia is to try to get a very balanced way of life and to find things that increase your comfort. The more comfortable you are, the more efficient rest you're going to get, the more helpful it will be with the pain and the tiredness.

Originally Posted by mike90

Thank you for your help with things; as I said before it makes me feel a little better to know that I am not alone xx

I know the feeling Feel free to contact me anytime

[mike90]

Thank you. I can hardly wait to be surrounded by old ladies in a swimming pool *Shudders*

I found the comfort definitely leads to better rest, slept on a friends floor months ago, and that caused my back to hurt constantly for about a month.

Feel free to contact me any time as well, and as I said I will keep you updated with how things go. XX

[seeksanctuary]

*careful hugs*

I have fibromyalgia, chronic pain and chronic fatigue. :[ I've been dealing with the pain since I was about 10, but the doctors just thought I was faking because the symptoms were so random. I finally got diagnosed within the last year... it angers me that it's taken so long. Getting a diagnosis is very important, so you can start to deal with it. No medication though... meds don't work very well for me.

One thing that has worked? Pranic Healing. It sounds hokey, but I have experienced relief from it, and am now learning how to do it myself. I also altered my diet and went gluten-free for a while, as I have a gluten-intolerance at least... the symptoms improved during the time I was gluten-free. Cutting back on sugar, corn and nightshades (tomatoes/potatoes) helped too. People tend to dismiss dietary changes, but they worked for me!

Exercises... swimming is good, as others have said. Exercises should not injure you. Maybe try some gentle yoga stretches?

[mike90]

I am crying changing my diet.... been having these random cravings for cranberry juice and spinach lol. It is shocking how long it takes for a diagnosis... it is something that they should take more seriously than they do at present. If left to my own devices I sleep for around 18 hours a day and am still tired afterwards xx

[Revan]

My mother has it. She's okay but there are days when she's completely wiped after work which is unfortunate. Other than that, she's not too bad...I wish you luck hun

[mike90]

Thank you, had physiotherapy today which was quite useful. They have found exercises I can do without too much pain . So tired still though...could have slept for another 12 hours this morning xx

[Rogertfl]

Hi Mike,

I have had fibro for about 12 years now and doing well with no medications, able to hike 5 miles and work out 3 times a week. Like you, I was in very terrible shape and the specialist MD I went too said I was the worst case she had ever seen. There are things that I did that changed my life and although I still have fibro, still have the pain in the point areas and other places, I am able to function and enjoy life again. There was three things that I did to make the change. I changed my diet, taking a supplement that works, and have a weekly workout regimen - and off all drugs. I only take Ibupropen when absolutely needed and only 2 tablets at a time. If you want to know more, hit me up, there is no secret to this and I have been sharing with many people who have had the same result including two female cousins of mine who also have fibro. I still have some pain, constantly, but it is the type that I can tolerate and does not impact my daily activities, but it is a far cry from not being able to walk anywhere or do anything, fatigued all the time. I do get fatigued in the afternoon and have to nap for 2-3 hours instead of 8-12 and then up for hours. Basically have a normal sleep pattern except for the added afternoon nap. I truly understand what you are going through and I have been there and done that. Some of the drugs I was taking caused me to have seizures, sleep apnea, severe pain (yes, some drugs add to the pain), memory loss and it can go on.

More than happy to share in another message but you can also send me an email and I can provide the whole story.

Take care - it does get better.

Roger

[mike90]

Hey there Roger. I have put a message on your wall but cant send a PM on here for some reason xx