finding some help

Hi everyone

I seldom write on this site as I have tended to use Action on Depression and the local fibro support group which are great. However I thought I would share with you how I am managing to reduce my fibro symptoms as well as generally feeling more positively.

I have a long term emotionally traumatic history, suffered from depression, had sleep problems and had joint problems. After a really bad 7ft fall I developed fibro and was diagnosed 4 years ago but by last winter I was in pain much of the time every day and was feeling 15 years older than my age which is 64. I became more and more frustrated by the seeming lack of help, took a very low dose anti-depressant which shifted my mood a little, joined the local support group who are great and really supportive, and then decided I was NOT going to let myself be beaten by fibro so began researching and tackling my problems one by one.

The first thing I tackled was being overwieght. Losing is easier said that done but I use Extante meal replacement shakes sometimes and the rest of the time eat carefully but normally, listing what I eat on the website My Fitness Pal which is brilliant as I can see straight away what is high in sugar or fat, or calories, etc. and preventing weight loss. Writing everything down has made me much more aware and research shows it leads to greater weight loss - I lost one and a half stone and my joint pain eased as a result - but many of the fibro symptoms didn't. I find I am not snacking as I did and not feeling so hungry when I don't eat for longer periods. I'm continuing to try to lose weight but decided to also try other approaches.

I added some supplements - Vitamins C & D, a multivitamin, high dose Calcium, B12, and Glucosamine and Chondroitin. I noticed on the My Fitness Pal website that my daily intake of Potassium was VERY low so added a Potassium supplement, then read about the link between Magnesium and fibro/joint pain so take Magnesium Citrate. The best thing is that while buying those (from Amazon) I came across Rhus Tox which is long established as a homeopathic remedy for joint and soft tissue problems. I noticed everyone who reviewed it said it completely shifted their fibro symptoms - of course I didn't believe them but bought some and within 2 days the intense muscle spasms in my arms that had been causing me so much pain every day stopped. I couldn't believe it! I continued taking Rhus Tox for 5 days then stopped and since have had no spasms. I can't say what shifted them but they have gone for the moment and I am relieved. If they come back I will take Rhus Tox again, I've already ordered another lot from Amazon.

As my joint pain had eased I decided to join a gym and went a couple of times but found it boring so joined a local healthy walking group. As they are called the Plodders I imagined they went slowly - plodded - otherwise I would never have gone, but in fact they go at a moderate walking pace which is fast for me. To my surprise I managed to complete the first walk which was almost 4 miles, ached all over when I went to bed but was fine the next day! Again, I couldn't believe it as I had been thinking of applying for a disabled parking permit - my husband has one as a result of chronic renal failure but often he had been able to walk to shops etc whereas I would struggle! Anyway, I then went to try swimming once and by chance overheard some women in the Jacuzzi saying they went walking with the Ramblers. I said how much I had always loved the idea of getting out and about but couldn't manage the distance, but they persuaded me to join the local branch and last weekend I went on my first walk. The Ramblers do a range of walks, the easiest being 5 miles over a whole day and to my surprise I managed 6 miles easily and could have gone further! I was again amazed. The group were lovely, really welcoming, lots of chatter and laughter, it was a really lovely day out in the Lake District. I have now bought walking clothes and rucksack and plan to do the 5 mile walks every fortnight as well as the weekly Plodders walk. The rest of the time I am as sedentary as ever and spend a lot of time sitting at my computer, but I am pleased to have a new enjoyable activity that gets me out and about and meeting people who are supportive.

This morning I saw the rheumatology specialist physio for an assessment. She said that the combination of weight loss, supplements and walking was exactly the right thing to get the best possible chance of overcoming fibro pain and that the only additional thing I might do is try a low dose of amitriptyline to help me sleep better as poor sleep quality has been shown by research to exacerbate fibro symptoms.

So... do not despair but try to tackle each bit of the problem in turn, one thing at a time. Research for yourself and try whatever seems to make sense to you as you are the person who knows your body best. Do not think you cannot do things but find out by doing, have as positive attitude as possible, if you can't do that then lift your mood with meds if necessary.

I hope my experiences help other people. I am not over fibro and not over depression but I have found ways to shift things into another gear and hopefully walking and increased health will feedback into making my symptoms easier to cope with if they reappear.

Suexxx

[jillylin]

That's brilliant news that you have found what works best for you. I think we all need to be our own best friends and try various things to see what helps the most.

Homeopathic remedies can be good but caution is still needed as they cash be contraindicated with some prescribed medications so checking with a GP or pharmacist is always wise.

Hugs

Jillyxx

[Hidden in reply to jillylin]

Thanks Jilly, and yes that is a good point about some homeopathic remedies clashing with meds - I knew about that but didn't think to mention it in case other people didn't, so thank you. x

[TheAuthor]

Hi secondhandrose

WOW! And thank you so much for sharing this with us all. It really sounds like you have not had anything easy in your life and that you have been forced to battle for everything that you have achieved! I really want to say that I am delighted for you, in that you are turning things around despite the odds being against you, and you genuinely should be extremely proud of yourself!

I sincerely wish you all the bets of luck with your continuation down this route and would be eager to hear how you are getting on with this.

All my hopes and dreams for you

Ken x

[fenbadger in reply to TheAuthor]

Not sure they'd take you, Mr Ken. You'd keep walloping people with your sink plunger

[Hidden in reply to TheAuthor]

Thanks Ken, so far still no muscle spasms. I felt dreadful last week - maybe due to the very high pollen count or a virus - so didn't do the plodders walk, but am going tonight and then to the Lake District on Sunday for another Ramblers walk.

You are very active on this site and the action on depression one, but don't say much about yourself, so how are YOU? I hope you are enjoying the summer weather. I've been pottering in the garden, having a bit of a clearout as we are hoping to downsize when we can sell our prsent house. Other than that I find it too hot and am pottering indoors instead!

Suex

[TheAuthor in reply to Hidden]

Hi secondhandrose

Many thanks for that. I use to really enjoy rambling but I have to use a tri-walker now so my mobility is very restricted. My wife was born and raised in Buxton (Peak District) and we use to go walking for hours on end.

I really struggle in the heat, it drains my energy! I genuinely hope that you are feeling a bit better and that you enjoy your walk.

Take care

Ken x

[fenbadger]

You make a lot of sense there. Ideally being somewhere near the right weight with a balance healthy diet should see most of us through life's trials and tribulations. That rather glib statement doesn't allow for the odd curve ball - however a good background fitness does help. There are sufferers, not just of fibro, who have a real struggle, then stress rears its ugly head and moves on if it gets an opportunity.

I'd never thought about Rhus Tox. It has an interesting history, north American origin, first used in 1798 for palsy - a sort of neurological problem so maybe that's why it works for fibro. PLEASE NOTE ITS NOT IN THE BRITISH PHARMACOPOEIA. Take great care using things that are not truly tried and tested. I doubt a GP would support it. This isn't the place for a full discussion but its side effects can be quite dramatic.

If you're sociable there are many walking groups around the country and "health walks" too. Don't fall into the trap of rewarding yourself with a cream tea I go round alone and appreciate the peace after a usually fraught week. The peace allows me to calm down and I find pain reduces with the stress. I think it helps to take the mind off things, so yes, as you chat to your companions its therapy in itself.

[Hidden in reply to fenbadger]

That, Paul is the one thing that I dearly miss. my solitary walks, with dog in tow.

Even now that I have my power chair its a no no where I live. None of the walks have paved paths, its more like mountain climbing than a walk.

Well time to put it from my mind or the tears will win and My motto is `No negative thoughts allowed`

[fenbadger in reply to Hidden]

I can understand that Sue. My short time without walks after my knee op was bad enough, and I knew it would end. I'm really pleased in some areas we're getting better, but not fast enough. I just had a rant on another site after reading about a lady who needed the disabled loo at a racecourse, but could not use it as it was full of stores and no room to manoeuvre.

Down here in the last few of years we've had a nature reserve paved for chairs and scooters, and a new cycle trail, albeit only a couple of miles, but gives the same people an opportunity to enjoy the same countryside and views.

[Hidden in reply to fenbadger]

No, I am absolutely sure my GP would NOT support any homeopathic remedy, but I found the approach cleared my daughter's catargh when she was a tiny baby and it had been causing major feeding problems. Since that time I have been more open-minded about the approach and as an adult my daughter lives in Mexico City where there is a far greater belief in alternative approaches. As a trained scientist (psychologist) I know that finding evidence for some things can be extremely difficult but that doesn't mean they don't work. My son lives in China and sees every day how differently they treat disease and normal events like childbirth with ease through completely different approaches to those we in the west choose to use. If I am going to use any homeopathic remedy I always buy it from a reputable manufacturer, in this case Nelson's who are considered one of the main makers of homeopathic medicines and are long-established.

I know what you mean about the cream tea, but find that when I walk I feel less hungry rather than more, because I feel healthy and satisfied, especially when there's a lovely return coach journey and chatter with warm and friendly people.

I wish I was someone who would like to walk alone, but I don't - except in London where I loved it - otherwise I find walking alone even in a town extremely lonely, and in the countryside I think it would be dangerous - from the point of view of the potential for falling - and foolish as a lone woman in my sixties. But yes, I can see how for some people the relief of having time to oneself may be peaceful. I spend too much time alone, so for me the company is lovely though while walking often I am solitary for much of the time as I find the rhythm of walking is hypnotic and ironically very restful!

[fenbadger in reply to Hidden]

Mine would!

He's publicly declared as a practitioner.

It's funny, where I go there are no people -not allowed but I'm prepared to take the risk

[Stilltrying_]

Thanks for the recommendation for Rhus Tox Sue; I had never heard of it but have just ordered some from amazon and it is definately worth a try, so I will see if it helps. I also feel that magnesium makes a big difference to my symptoms and I also take multi -vitamins combined with exercise. Gemma

[Hidden in reply to Stilltrying_]

I hope you find it beneficial. I can't say for sure that it shifted my muscle spasms, and I didn't believe it would, but certainly after months of irritating and tiring pain I suddenly found it had gone! x

[clare_hart]

Congratulations and thanks for sharing. You are courageous and intrepid. I like that you stress doing one thing at a time and finding out how each thing works for you, rather than loading up with lots of things at the same time.

I walk a lot with the dogs. Sometimes this helps and sometimes it makes my back ache like the dickens. But I am ready to try some easy roller blading again. There is a great smooth path that runs 8 miles near my home, though I will start with about a 1 mile round trip first.

Once I did a 2.5 mile mountain hike and the connector path was grown over. It ended up being a 5 mile hike and I was sore and exhausted for three days. The next time we did about a mile and a half on a route I knew was clearly marked. It was fun and easy going, no pain afterwards. Well, a little but hardly worth mentioning.

You are an inspiration.

[Hidden in reply to clare_hart]

I don't know about being an inspiration, but I am strong willed, stubborn and have persistence, and I think those qualities enable me to fight things head on. It is as if once I have hit my base point I am able to say - enough is enough, I'm not ready to give up - and fight back. I think that's necessary with any illness or health problem. Do you know the poem Do not go gently?

Oh I would love to walk with dogs - but we have 4 cats - my husband doesn't want a dog and anyway it would be hard work to manage him AND a dog! (he has renal failure and is becoming forgetful, so managing him is a necessity at times).

Roller blading makes me think about roller skating which I adored as a child, I used to skate all over the place. Despite my age and having joint problems I would probably have a go on skates if I lived in an area where it wouldn't look crazy - I wouldn't like to stand out too much and around here I definitely would as it is not a trendy city suburb... Good luck with the roller blading!

Yes, I have sometimes done quite short walks and been sore and exhausted, but other times do longer walks and am not tired or aching at all. I guess it depends upon so many factors - general health, weather, humidity, low pressure (I often respond to changes in air pressure by having health issues), stress, companions - so many things. Will you go back to walking?

[clare_hart in reply to Hidden]

I see that about you: stubborn, lol. I am walking the dogs, but if I go as far as I used to, I hurt and feel exhausted. So, a little at a time. I also have developed GI symptoms that are draining my energy, dangit. Lost 4 pounds in a couple months and a bout 5 or 6 since January. Appt. with gastroenterologis pending. So, not roller blading yet. I will look up the poem you mentioned. Just the name tells me it is important to you and mirrors your own view of life.

[Hidden]

Hi Secondhandrose - I follow a similar regime, walk in a group about 10 miles a week, last January I could hardly get out of bed!! I've lost weight too which has helped and I take Magnesium, Vit D, iron and Zinc, that seems the best combination for me, I take about 35 mg of Amitriptyline at night, 50 if I really need to get more sleep, I was quite depressed at the beginning but made an effort to to activity to raise my mood, Pilates has really helped too. I'm glad you've posted as sometimes people only post when things are bad - we need to raise moral, and a positive outlook is the main thing to "manage" FMS, I'd like to say cure but we know it isn't curable!! xx

[Hidden in reply to Hidden]

that's really great - it's funny that you have come up with a fairly similar pattern to my own, great minds think alike! I guess when it comes down to it the way we are approaching fibro is common sense. Use it or lose it applies to muscles and joints as well as the brain, and I intend to keep them all for as long as possible - well I do when I'm due to go out on a walk, the rest of the time I can spend hours sitting at the computer when I know I should be up and moving around...

[Hidden]

Thanks everyone for your positive responses. x