My name is Sarah, I'm 26 and I work full time as a lawyer.
I've just discovered this fibromyalgia forum and I have been reading through some of the posts. I was only diagnosed in January this year so I have a lot to learn about the condition. I am curious to know whether anybody else is trying to manage the condition through exercise and pain management rather than medication. This is how my rheumatologist is approaching it for me and I'd love to hear the experiences/tips of others who have tried this successfully in the long term.
Sarah x
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SarahMW
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Welcome to the best support/advice/friendliest group,of people. I joined on 9th June, and have learnt so much, shared bad days, helped a little, and feel that i atleast have some value.
You will get lots of posts soon, just finding you after 11minutes gives me the jump on others. This is such a friendly site, we moan, complain about no sleep (some are night owls who reply in the early hours).
I have made so many friends with similar problems, shared bad days and sleepless nights, just been there when something kicks us in the teeth, best of all, sharing special family moments with others.
Never ever feel bad about moaning on this site, so many of us have been there, have the T-shirt, wrote the film script. When you need comfort, support, a little TLC, there is no better place to be.
Hayesider, hope you find the love and comfort I did after joining xx
Hi Sarah I have struggled with fibromyalgia for over 4 years - pain mainly in legs, hips, ankles and knees - losing strength in my legs, I am not happy with my medication (side effects). so I am exercising - aqua, and swim and eating very healthy - pain harder to deal with at the moment - but only stopped a few days ago - need to get weight down !!😒. By the way this is a great site ☺☺. welcome - Neese. x
Welcome to the forum but I'm sorry you have to join us! I know it's already been said but you will find a lot of support, information, comfort from this site. Oh, and a lot of laughs too.
As for exercise I personally find I am too tired to move never mind do anything strenuos. Having said that since I started taking a variety of supplements, due to vitamin deficiencies, b12, D, folate and iron, I have improved significantly. It has allowed me to get around easier and have less pain. I also felt able to see a chiropractor which has also helped. Physio didn't help, but made me worse as did acupuncture, but many people find them helpful. It's about finding out what is best for you.
The main thing is to pace yourself, rather than do to much. I was prescribed amitriptyline, but didn't take it as I wanted to see if the supplements would help.
You may want to check out the mother site too on fmauk.org
I think pain management is more about using things like tai chi or hydrotherapy isn't it? The pain clinic I attended was just about medication.
Other more experienced members will give you better information. Good luck.
Sarah, Hi and welcome to a great place for help and fun when you need it.I take med due to other factors that also control my FM pain.Have a good evening.Peck🐤w
Hi Sarah, Welcome With a variety of health issues, for me it's been about finding a balance, not easy when no 2 days are the same. Exercise is out, but I have made a lot of changes in diet and supplements etc. You may find with FMS (Fibromyalgia Syndrome), many have a number of other conditions that go with it, more common than you would find in general population eg. Thyroid problems quite common, rheumatoid arthritis, and IBS (irritable bowel syndrome). IBS has been tough to sort out, never really gone, but I've found many benefits from cutting out dairy, wheat, gluten. I use high in protein especially fish because I love it, if it used to live in water it's mine! Lots of fresh fruit and veg. Vitamin B12 & D, magnesium seems to be a big help, eg. Spinach, strawberries, bananas etc. everything I enjoy luckily
You will I'm sure come across 'fibro fog'. Extreme fatigue and a rotten short term memory and general mental wading through cotton wool. I would love to know how you manage in your career! Of course not everyone has exactly the same symptoms, or to the same degree. Some experience horrendous 'flare-ups' in times of stress, and manage quite well in between.
I wish you every success in your search for whatever works best for you!
Tulip aka Dawn xx
Hi
I'm sorry that you are a fellow sufferer.
I am sure you'll get lots of help and support on here.
I don't take any meds other than pain relief like aspirin etc and Volterol gel, not through choice, but because non were suiting me. Everyone is different and lots of people are happy with their meds. I am on antidepressants and use a gentle massager too.
I did go swimming but found it too much and gave it up.
I have tried changing my diet, but have not found this has made any difference.
I went to the pain clinic and the best advice I got was not to fight it like a normal illness, but to manage it and adapt my life. Pacing is what your told and that means try do do what you can rest and then try a bit more etc.
Most of us suffer from lack of sleep, which effects us and can make us depressed along with the pain, hence a lot of people are on the site at night.
I don't know if you have fare ups? A lot of us do and that again I just have to ride out. I am going to try swimming again, but only a few lengths and then sit in the jacuzzi, which helps a little.
I would suggest you try what you think will help you, as I said were all different and have different symptoms and reactions to treatments.
Has your dr diagnosed you or have you seen a rhuemy consultant?
If you try the drug free way and feel it's not helping please ask for meds to help, as there are a lot they can try.
Its lovely to meet you. I have to say that I have tried almost everything including natural remedies, acupuncture, Physio, Pilates, Hydrotherapy and swimming / gym. I have to say, for me personally none of it has worked. I have seen that it can help others but I think it's down to the person.
I currently take a lot of medication, and it only does the bare minimum so I can get out of bed everyday.
I wish I had something more helpful I could say. Please feel free to message me any time even just to ask questions.
As fibro pop says managing this condition is all about pacing yourself and learning to manage your symptoms. It is important to "listen" to what your body is telling you. If it is telling you to take a rest, then take a break, because pushing on through will only make pain worse. There is an excellent website about becoming an "expert patient ", called paintoolkit.org which you may like to look at.
I manage my symptoms by gentle exercise short walks with the dog, swimming, yoga, gentle gardening and don't be afraid to say NO when others expect too much from you!
I also find that being very organised and planning carefully is very important. And eating healthy food, lots of fruit and vegetables, porridge oats and oily fish.
You also might like to look at the mother website for this group fmauk. which has good information.
Let us know how you get on, and feel free to ask questions on here there is usually someone who can help answer.
Hi Sarah, I'm glad you came across this site it's so helpful and can help you mentally. You are not alone and just reading other people's experiences will help you to realise that you are not loosing your mind, you genuinely are unwell and the pain you are in is real. When you are unsure of something just ask the group and hey presto you will have many suggestions to try.
I exercise regularly as I find it slows the deterioration, but I do also need medication too. It's the only way I can carry on working (and cope with commuting).
I'm sure one of the mods will be along soon to give tips on using the site to the max, including locking posts so that they are not available internet wide.
Hi Sarah,
Welcome to the forum, you will get a lot of info from some very knowledgeable people. I will exclude my self from that as I am still only learning what I can and can't do, but this site is great
I personally find exercise to be a double edge sword. You need to exercise to keep you muscles fit and the obvious health benefits, but then there is the aftermath if you overdo it. I do stretches every day but walking causes a lot of pain in my back, legs and feet. I recently bought a dvd from FMAUK and will hopefully be trying it soon. It is specifically designed for people with Fibro to build up their exercise programme without pain.
It is very interesting to hear all of your experiences with non-medication management.
As with many of you, I do also have another condition, in my case it is Pernicious Anaemia and I have B12 injections every 12 weeks.
I have been trying the exercise management for six months now under the instructions of my rheumatologist 'no pain, no gain'. I have actually been advised the opposite to the advice many of you have received. I have been told to push on through the pain, continually challenge myself and that if I feel comfortable with the level of exercising I am doing I should up the level. I must say, it is working for me personally. I have seen a drastic improvement over the last six months. I still have flare ups, but they are less regular and less intense. Obviously there is a degree of learning when to push myself, and when I really need to rest. For example, the last two weeks have been non-exercise weeks as I just cannot handle it. For anybody who has tried the exercise thing for a short time and given up, I would say give it another go if you are able. For me, it was worth pushing through. Having said that, it did get worse before it got better, and you have to be prepared to handle that until the benefits start kicking in.
I agree, I do a workout set by a physio. She said I can push myself but instead of going at weights like I use to I now do each rep as slowly as poss and only step up the weights every 3 weeks - if I can do them without causing significant pain or exhaustion. When I was first diagnosed I used to run everyday and used to run through the pain, until my ankle got so painful I couldn't even walk on it. A year of tests and waiting for physio on it meant i could only swim at the weekends (lack of time, which is why I ran to work). During this time I hit the slippery slope and now walk with crutches amd have flare ups far more often.
So keep the exercise up, it's the best thing you can do.
I sincerely hope that you are feeling as well as you possibly can be today? Welcome to the forum and it is wonderful to make your acquaintance. I tend to use a multi treatment approach whereby I have medication and undertake a daily exercise regime. I also have two TENS Machines which I find work well for me.
I want to sincerely wish you all the best of luck, and please take care of yourself.
I find swimming really good. I started with a couple of lengths and built it up every time by a length or 2. I was only diagnosed mid March, I am now up to 24 lengths and feel the benefit. I would advise whatever you do to start slow and see how your body reacts, as with a full on job, you probably shouldn't risk "going for it". I am nearly double your age, so maybe your body will cope better than mine. Walking is also good. This time last year, I could hardly walk to the end of my drive, now I do an average of 5000 steps per day. I suggest using a step app to monitor it / motivate you. I
Welcome Sarah. Love this site found it a few years ago. Everyone’s very friendly great support. I haven’t been on for a while both my husband and I have the flu once again 5, days now still not any better fibromyalgia flare up. Wishing everyone health and happiness here’s to a better year for everyone. You are all in our prayers and thoughts daily xoxo
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