Fibromyalgia

[Quantock-cob]

After struggling for a year with ever increasing pain and tiredness, I have now been told that is very likely that I have Fibromyalgia. Whilst it is good to finally have a diagnosis, I am desolate at the thought that this is a chronic condition that I will be living with forever. I am only 45 and until last year was very active (dog agility/ riding several times a week/ gardening and working). I have had to give up work as I just couldn't cope with sitting a desk for 6 hours a day; the dogs only gets two short walks a day now sadly although I can play with them in the field; and worst of all i can only ride for a max of 30 mins before I am too sore. Luckily despite my OH working really long hours he is now doing nearly all the horse care, riding at weekends and taking my dogs out for long walks.

Sorry for the long self indulgent moan, but I would love to hear from other people who have FM and have worked out how to cope with it and keep riding. Thanks x

 

[Oberon]

I don't have it myself, but I know a lady with it.

She found improvements by eating whole foods and cutting out refined foods and preservatives.

She also went to the trouble of finding a dentist that was willing to remove all her metal fillings from her teeth - she found great benefits from that (although it is not widely recognised as a treatment and she had to pay to have it done).

 

[LynH]

I have fibromyalgia along with some other health issues. I'm 42 and have chronic lung/rib pain and get really tired from even the smallest amount of exercise. Some days I can ride for an hour or so and walk the dog and on other days I can't do anything. I take fentanyl and morphine so I'm not always able to drive so we moved to have the horses at home. I moved to part livery a few years ago but couldn't get there enough to keep an eye on my horses so having them out 24/7 at home works better.
My friends have been amazing and have helped me so much.
Mine isn't the best example as I have other issues with my lungs and heart and following FM pacing programmes don't help me as I get pneumonia alot and take alot of different medication which affects my levels of tiredness. I haven't been able to work for 3 years which is frustrating but has helped alot. I am also lucky that my horses cope well with doing very little sometimes then building up to more regular work. I've had a few bad weeks because of the wet weather so I didn't ride much at all. The key is not to overdo it and to try not to add too much stress. I feel better now my horses live out, on part livery I was stressed and worried as I knew they weren't being looked after how I wanted and I couldn't get there to check them.
Pls pm me any time but pls don't feel that because I struggle to ride very often that you will too, my situation isn't typical of FM.

 

[Quantock-cob]

Thanks to both of you for your suggestions.

Oberon - I have heard that a whole food diet may help and think we will be moving over to that. I have already given up alcohol as it makes me feel really bad the next day (even after just 2 glasses of wine). Interesting about the fillings - I will read up on that. But not sure I could face that as I am a big wimp about going to the dentist

Lyn H - I am also lucky that my cob is the type who does not need ridden every day and I have also had offers from friends who are keen to ride him and help me out with him during the week if am too tired.

 

[spottyfilly]

I was diagnosed last year, it is horrible, I found that it is all about management. I always have to have a.sleep in the afternoons else I cant function. Re the pain/aches I take paracetamol or nurofen if bad, I have been described tramadol for my chronic lower back pain (due to being thrown off last year) and it is an amazing pain killer but I cant drive off them so only take them in the evenings. You just have to listen to your body, if your tired, have a sleep.its the best thing to do I found.i am feeling a lot better this year but do still have episodes where I just need a day or 2 off to recover.

 

[spottyfilly]

Sent off phone so I apologise for my typos!

 

[katherine1975]

A friend at work has fybromyalgia and she went here http://www.oakleyclinic.co.uk/ and found it really helpful. Mary King's daughter went on the course to help with ME which is related to fybromyalgia.

 

[Farma]

My sister suffered terribly until she was diagnosed then she changed her lifestyle and her life has completely changed now, I don't know the ins and outs of the condition but for her it was depression linked, when she met other sufferers at a support group she didn't want to be the way they were with it controlling her life, so she changed it.
Please look into advice on how to manage as my sister is unrecognisable from the person she was before, she was I'll and tired and depressed every day now she is lively and fun loving with a great outlook on life.
Good luck

 

[SaharaS]

Just found your post..I have it too and ME pretty much the best advice i can give is eat as healthily as you can, pace yourself and do little and often ie don't sit/stand or do too much...so everything in moderation and if you can't do something, it can wait till you can. I am unable to take any oral drugs, so rely on heat & hydrotherapy to try control it. I was on 36 pills a day-various concoctions of morphine, codeine, naproxen, tramadol, gabapentin and ibuprofen-different ones according to how i was at different stages but made me so ill I stopped them all when I couldn't stand or literally started becoming anorexic-the thought or food (my passion) in my mouth was physically unbearable at one point, the smell and texture etc was hell and I got very week.Drs said persist it might pass when body adjusts...but I stopped taking everything in dec 2010-within a week I felt human again.Now I am unable to even take half a paracetamol without it totally knocking me for 6.I was originally diagnosed in 2010 as it being a direct result of a spinal injury and spinal chord damage after a riding accident- I opted to stay on a rearer who landed on me on concrete after falling down a bank in 2004. I'm in Somerset too and posted recently about a cake club /curry/ meet up, which you are welcome to come to if you wish..also sometimes helps to have people who understand so am here if you need a whine...it isn't self indulgent in the slightest..sometimes the only way to get it off your chest to people that really understand to wake up & be unable to move your legs on their own..then feel fine the next day. I will say coffee,curry and spices really help me so worth a shot!Saunas and spas and keeping as gently active as you can. Riding is fully supported exercise so can be an amazing benefit, even if small bursts.Hope you aren't feeling too bad with the weather at the mo x

 

[Pale Rider]

Avoid artificial sweeteners like the plague, including soft drinks with them in like diet coke type crap.
Improve your diet, cut down on red meat.
Hope things improve for you.

 

[acrossthevalley]

Hi, havent got fibromyalgia, but a friend does. I have cfs/me.

For the pain i find heat is best for me, in the form of thermals whatever the time of year and heat pads and wheat pads which go in the microwave.

Riding has changed dramatically as has my whole life. I used to ride most days for a couple of hours each time. Now I am lucky if I can ride two or three times a week in walk. Even on the nicer days weather wise I still wear my thermals and jumpers and gloves, if i get cold i get pain!

Its not just the riding its the time taking to get the horse in, groom and tack up, and then it all to do afterward, the exhaustion and pain really arent nice. I find the riding non weight bearing as opposed the the miles of dog walking i used to do. The horse is really very good, can ride her whenever and has no mad moments, although she spooks and my reflexes arent as good as they used to be. Someone else rides her occasioanlly too.

On 'good days' or should I say, when you feel well enough, its a good idea to fill a fw haynets etc as back up for when you are too poorly but am sure you are doing this already. Back to basics is good, and dont worry if you havent been able to do the 'little' jobs with your horse. Keep a hoofpick with you for daily hoofpicking so you dont need to walk any further. Those sort of things.

My dogs too, just get free runs and balls chucked etc, someone else takes them for a walk. They are happy and well though.

Have pm'd you other stuff. Just remember you arent alone, there is support out there when ever you need it, and you really do have to listen to your body and accept what is happening to it, and learn to manage it. Easier said than done, but its the fit active busy people who seem to get fm/cfs/me. We need to learn to adapt,and our animals will adapt as we do. They stillkeep me sane.

 

[igglepop]

I have fibromyalgia, I'm 22 have had it for 3 years, its annoying but the best bit of advice i was given is fight it. Don't sit around because it hurts because the less you do the less you can do. My doctor told me to watch what i eat and make sure i don't cut back on exercise no matter what. I find epson bath salt are great but refuse painkillers. I want to stay off them as long as possible. If you are near london there is a special fibromyalgia centre there will find info later which is supposed to be amazing they cover diet fitness and pain relief. Also if you are on fb it is worth joining the groups on there as they will have more answers than your gp. Also went to a therapy group recently and they said any water based exercise is a must as you can do more in the water than out. Lastly when it come to horses i wold recommend making sure they are very quick off verbal commands as i find it invaluable when my legs start hurting mid canter to be able to get back to walk stop whatever without having to fight against extra pain. Pm me if you want advice or anything it isn't as bad as it sounds its just a challenge.

 

[wellsat]

I take Amitriptyline for my fibro and its that that has made the biggest difference. Diet and lifestyle help but the medication means I can almost forget I have it. I tried stopping my medication recently to see if I was just better and it returned with a vengence.

 

[LynH]

wellsat - what dose of amitriptyline do you take? I take it but the pain is so bad I take high doses of Fentanyl and Oramorph constantly too and am still unable to ride regularly. I'm interested to know what dose you are on if you get so much relief from it.
Thanks.

 

[supagran]

My sister in law has fb, she joined a self help group and found it a great help.

 

[chels]

Don't have Fibro, but I do have chronic RA. I was diagnosed at 17.
Don't let it stop you! If I didn't do anything that hurt, I'd never do anything. I am on pretty heavy meds, which I stay on, because RA deteriorates the joints. I have fused wrists, and malfunctioning hands, elbows, knees. Limited movement and strength.
Do watch what you eat, try to stay away from heavily processed stuff. Keep warm.
PM me if you want to talk about anything

 

[ElvisandTilly]

I was diagnosed with fibromyalgia nearly 3 years ago. I had complications with symptoms due to hypothyroid and premature menopause so it was all a bit of a mess to sort out!

I am now on medication for the thyroid and HRT and take amitriptyline for the fibromyalgia and can honestly say I have never felt so good! Lol!

If I stop taking the medication I go down hill so have accepted I will be on it for the rest of my life but at least I can do everything I want to.

I do get tired days and still some pain in legs and back but these are copeable.

I try to eat healthy to keep my weight in check as my weight crept up due to the thyroid problem. Keeping weight down also helps with my energy levels and pain.

I wish you all the luck in finding what makes you feel better. Everyone is different. If you feel tired then don't over do it or you will pay for it the next day. Things can wait to be done. All the best

 

[Archiesmummy]

I have been suffering for some years but it was only yesterday that my doctor drummed it into me that I am suffering with Fybromyalgia. She has mentioned it before but I didn't really take notice, more worried about the depression I was suffering.

Apparently it is or can be linked and confirmation yesterday was like the last bit of the jigsaw fitting.

Its almost been a joke to some of my family, them thinking I am just a lazy lump with no need for speed, I got fed up of telling them I ached or I felt like I was walking through thick soggy mud.

To all fellow sufferers, you have my sincere sympathy and I hope you can, on your good days, live with some normality.

 

[Dunlin]

I have M.E and FM, diagnosed 4 years ago when I was 28. It's evil and wouldn't wish it on my worst enemy.

It struck me just when i was getting back into horses and looking at a share. Unfortunately I'm too unreliable to do this but now I have moved from Milton Keynes to Dorset I have loads of lovely neighbours that like me cuddling their ponies when I feel up to a wander

I gave up work 2 years ago and this was the biggest improvement as I can now pace myself without pressure. Diet is important, as someone said, plenty of fresh fruit n veg and home cooking rather than ready meals high in salt etc. I do batch cooking on a Sunday so have 'freezer meals' for the whole week.

Pacing is key, listen to your body, if you don't want to wake or get up then don't, if you're tired at 2pm then go to bed, if you ache beyond belief lie down with a microwavable wheat bag (they are my saviour). Try physio, it works for me. I can only afford to go once a month but it gives me a week of feeling YAY!

Don't waste your money on miracle cures like The Lightning Process, they prey on desperation.

Visit Holland & Barrett, keep your body topped up on iron, vitamin c and d, fish oil is great for creakyness in winter and if you suffer from stomach problems try papaya enzyme.

If things are closing in don't hesitate to see your G.P about mental health, it's a massive life changing illness and you need to look after every bit of you and get help for all bits.

I'm sorry to anyone suffering, it's cruel *hugs* xx

 

[Bethie]

I had big problems with ME/fibromyalgia a few years ago but luckily am pretty good at the minute, if not back to the energy levels I used to think were normal. Reading your post has reminded me of the lack of muscle power I had at times. My doctors were of the chocolate teapot variety so I never had a diagnosis, never mind any help from them (advice was limited to try getting outside for some fresh air - to someone who had 4 horses on DIY and 2 big dogs, when I said I couldn't get up or out and do stuff I meant it!). So I was on my own.

I thought that the muscle pain/cramping/solidity/lack of movement was similar to a horse tying up or with EPSM, probably an issue with glycogen in the muscle tissue, and that I'd try approaching it from that angle. With that in mind I supplemented with a good spec multi vitamin, plus another supplement with high levels of selenium and vitamin E for a long time. Low sugar/starch diet. I also found a 5HTP supplement really helpful.

After doing some reading I did want to try supplementing with a specific sugar called D-Ribose but cost was an issue as I'd been out of work a long time by then and luckily was improving. It might be worth trying it though.

 

[fallenangel123]

Fascinating to read there are others out there with horses still getting it done. I have just been referred to a neurologist as this is what my GP suspects.
Always had plenty of aches and pains but just figured it was from working with horses and being outside in all weathers. In some was I'll be relieved it's not arthritis or similar, on the other hand it's not good news either.

 

[guesstimation]

I suffer with ME ad lots of related pain, I used to suffer an autoimmune disease so after years they removed my spleen and it's left me with this which is far worse, at least with the disease I had it would flare up I'd have hospital treatment and it would be gone for a couple of years now it's continuous tiredness, pain and a struggle.

I count myself lucky as I can work full time, does mean I often go through long phases of having no life and also having long periods of time of work where again I am lucky as I have very understanding employers, and I say no a lot!

I have a Dartmoor Hill Pony who lives out at a livery yard and again I am very fortunate that the YO is amazing, when I am tired and having a flare up she happily checks on him to ensure he's ok and other liveries are always keeping an eye on him for me, he's a good doer who is low maintenance so it's not like he needs feeding every day, I couldn't manage physically or financially with something that was high maintenance. I have advertised him for loan though as I am struggling still even with this help, plus he's recently backed and I don't have the confidence and bringing him on stresses me out which does him no favors and my ME no favors as the stress doesn't help flare ups! It's a shame as I've had him since an unhandled 6 month old foal and he's now 7, some say he's fine unworked but I then get paranoid about laminitis and him getting fat and there aren't any lightweight adult riders wanting to ride him for me!

I had a few days recently and I was thinking wow I've not taken a painkiller for 4 days! Then yesterday I was hit again and so tired and achey and headachey, I was supposed to see my pony but went home straight to bed to rest and dosed myself up. I find codeine the best pain relief for me when it is bad, I try not to take it often though as I don't want to end up addicted to painkillers so it is generally very bad when I resort to them.

My lifestyle has changed considerably and I look at old friends and feel very jealous watching them do the things I used to love doing with them, going out, meeting up etc but now it's generally too much. One on one in a quiet place is great but groups of people and noise makes me confused! On a good day though I'm ok and I do have good phases.

I've started to try and enjoy the good phases and make the most of them rather than thinking if I do this it might make me worse, I just do it otherwise really what is the point in living to work!! Helps keep you happy so make the most of the good days and enjoy them and do what you want to do.

I take lots of vitamins, magnesium was recommended to me and probiotics which I take in tablet form. I am seeing a rheumatolgist in London on Weds not sure if it will be any use, I paid to see someone privately a couple of years ago and now have an NHS referral finally.

I'll stop rambling! You're not alone with it and I believe you can find a way through, you have to do whatever you can to try and keep spirits up, I've been low before as a result of this and the frustration of not being able to have the life I once had but I fight back and look in the positives. I think if you let yourself get too depressed over it - which is totally normal and acceptable - you can end up in a bit of a vicious circle and if you start to feel better you won't know it as the depression is keeping you low and scared so for me the best thing is having things like horses around to give you that reason to get up and keep going. If I can keep my pony I will, if I feel he's too much I will loan him and probably get another young pony to bring on as and when I can handling wise as that will fit in with the illness.

I wish I could work part time that would let me pace my life fully but sadly not an option as I can't afford it and I wouldn't pass the benefits assessments as I can work 5 days a week they don't really take account of what effect that working 5 days a week has on the rest of your life or your employability! I am lucky to have good employers but don't really have much of a future career at the moment if I wanted to move jobs!

I hope everyone finds things that work for them and a way through this, it is a constant battle and we just have to hope one day we'll win it

 

[fuffy]

I was diagnosed with fibromyalgia in my mid 40's 64 now and much more manageable.
I think a lot of it is learning to live with the constant pain, doing things when you can and knowing when your body needs to rest. My dog walks have got shorter likewise my rides. I try to take as little in the way of painkillers as I can but do find heat, hotwater bottles in my case really helps.
Initially I think I was so angry with it watching others younger than me so able to do stuff but I now accept it and it makes it much easier. I am determined to carry on doing as much as I can while I can!

Just a little question , does anyone else get the sudden acute exhaustion which brings you out in a sweat and totally saps your energy? They come with no warning and only go after about 15/20 mins of sitting down and having a cuppa or soft drink. I can hardly lift a cup when I am like that.

 

[tabithakat64]

I have fibromyalgia (amongst other things) as well as having suffered from ME for 16 years and still manage to work full time as my work are very supportive with adjustments such as working from home, disabled parking permit etc.

A lot of the time life sucks, but meds, pacing etc help somewhat and truthfully there are times it's overwelming but I am very lucky to have a supportive OH and friends who help me out a lot.

The key is learning your limits and making things as easy as possible for you to do yourself as well as having a support network in place for the times when you cannot cope on your own.

There are some great support forums out there and lots of meds and form of therapy that may help you.

Please feel free to message me if you ever want to chat.