DO any of you have fibromyalgia? how do you cope?

[ggray1502]

Hi,

In the summer I was diagnosed with FM, it affects my back, feet and hands. I am constantly exhausted and the drs are struggling to get my medciation sorted. (have been told I will get worse and may have to give up work, have been put on part time hours until xmas)
My mare had a foal in May so havent been riding have just been grooming in the field and spending time with them in the field. I am really worried about winter and what the future holds. I love my horses and they are my only 'hobby' so dont want to give them up.

I just wondered how everyone else copes and if you have any tips

Thanks

 

[Seahorse]

Hiya I was diagnosed on wednesday with this Still at least I know why I feel rubbish all the time!

 

[bensonthewonderhorse]

I can not say I know how you feel, but I would strongly recommend seeing a nutritional therapist, there are many that specialise in this area and although you can't cure fM you can reduce the symptoms and live a much more active life.

Good luck

 

[Seahorse]

I can not say I know how you feel, but I would strongly recommend seeing a nutritional therapist, there are many that specialise in this area and although you can't cure fM you can reduce the symptoms and live a much more active life.

Good luck

Thank you, how would I do about getting one of those? Would my doctor be able to refer me?

 

[missy1980]

Hi,

Don't despair too much, it can be a long haul, but once you get the management right you will be able to cope. A lot of benefit can be gained by learning to pace yourself (even if you are feeling OK) and also finding out what triggers you. For example, I cannot allow myself to get cold, if I do I know I will suffer for it.
I have secondary FM, that is, it is caused due to an underlying connective tissue disorder that I have.
Do you know what, if anything has caused your FM? FM in itself is caused through disturbed sleep (they can actually force your body into this state, apparently most junior doctors suffer FM at some point) I firmly believe that most cases of FM have an underlying cause, this could be anything from stress to something like MS. Unfortunately, unless you get a very sympathetic specialist, they will diagnose FM and leave it there, however, it is important that you rule out any other potential problems. I was diagnosed with FM and if I hadn't gone to a physio, I would never have been diagnosed with the other condition I have but by being able to manage this other condidtion, the FM can be lived with.

Sorry this has turned into a bit of a ramble! My main point I suppose is to investigate and learn as much as possible, knowledge is power
One word of caution, I was encouraged to join my local support group but I found them to be very negative and accepting of their condition, this may just have been that one group but it seems that FM is accepted as being debilitating when I am proof that it doesn't have to be.

Yes I have to be careful about what I do, but its more about when and how much not actually stopping doing anything. As I said, it will take time and experimentation but you can get to a stable position where it doesn't limit your life too much.

If you have any more quetsions just let me know.

H

 

[Daisy2]

Here here missy1980, there is a lot to be said for doing your own research and asking lots of questions, I was diagnosed with a debilating desease (MS) and qualified for a very expensive drug where you had to be that bad it was worth the 1 in 40000 risk if dying from a brain infection, anyway I refused the drug and found (after many specialists and blood tetst) that I actually had hughes syndrome which is controlled by one aspirin a day, its been 2yrs, I have not had any symptoms and if anything more active than I have ever been. So the answer is do not take it on the chin find answers, experiment with different things, look at other deseases/illnesses with similar sypmtoms. I have found that specialists for example neurologists are experts in there field and dont often stray into unknown territory unless you the patient asks the right questions. My Neuro did not test me for Hughes I asked for it.

Oh and on a horsey note, my horses help me a great deal in terms keeping active and good old horsey therapy, they can be healers too! Good luck x

 

[gillyfilly]

Hi

I've had fibromyalgia for 15 years (was being treated as arthritis as symptoms similar), and my worse places are my neck, lower back, elbows and knees (great!!)

Its all to do with pain management. GPs and Consultants alike do not really know much about the condition, and I have been self treating now for 6 months and feel better than I did. I was on amitryptiline at night to help me have a 'restorative' sleep, but I was becoming paranoid and very moody on these and I took myself off. It also made me lose my confidence with my lovely pony and now, at the moment, I cant hack out on him - but I'm working on it!

If you stop doing things, especially mucking out etc, you will feel worse. This sort of condition you mustnt give in to. Having horses I think is a great thing. Theres nothing you can do about it and lets be honest, we could have worse! Exercise is good, especially swimming, also massages and acupuncture (I have a massage once a month which is far nicer than tablets).

Sometimes I am in a lot of pain and extremely tired, but you learn to live with it. I have learnt to carriage drive and I sent my 19 year old cob away for a couple of weeks to learn it also, bless him! My carriage will be up and running soon and then we can take off. So now when I cant ride because of the pain (especially in the winter), I can take a little drive instead.

There will be good days and bad days. On the bad days I've even taught my pony to play football! Horses aren't all about riding - its about companionship and love for the beast. In one way I think we're blessed, we get more time to get to know them on the bad days, than probably anyone else does with theirs.

Not all doom and gloom honest! Enjoy what you're doing - you wont come to any harm and pain can be controlled - good luck x

Gill

 

[sydneysmum]

Hi seahorse I posted a thread last night on the me/cfs thread. You spoke about having fidgety legs and arms. I have recently diagnosed myself with fm and had it confirmed (think `ive had it for years) and one of the symptoms can be restless leg syndrome (you can have it in your arms as well, which I have) and have been given some medication to help. I have had it since a teenager (am now 50) and it has got progressively worse. The medication is a godsend although I believe it will need to keep being increased as my body gets used to it. I am worried reading that ms has similar symptoms. Could anyone enlighten me as to how you would know if you have ms. My cousin had it for many many years. Is it hereditary. Hugs to you all who are suffering xx

 

[Seahorse]

Hi

I've had fibromyalgia for 15 years (was being treated as arthritis as symptoms similar), and my worse places are my neck, lower back, elbows and knees (great!!)

Its all to do with pain management. GPs and Consultants alike do not really know much about the condition, and I have been self treating now for 6 months and feel better than I did. I was on amitryptiline at night to help me have a 'restorative' sleep, but I was becoming paranoid and very moody on these and I took myself off. It also made me lose my confidence with my lovely pony and now, at the moment, I cant hack out on him - but I'm working on it!

If you stop doing things, especially mucking out etc, you will feel worse. This sort of condition you mustnt give in to. Having horses I think is a great thing. Theres nothing you can do about it and lets be honest, we could have worse! Exercise is good, especially swimming, also massages and acupuncture (I have a massage once a month which is far nicer than tablets).

Sometimes I am in a lot of pain and extremely tired, but you learn to live with it. I have learnt to carriage drive and I sent my 19 year old cob away for a couple of weeks to learn it also, bless him! My carriage will be up and running soon and then we can take off. So now when I cant ride because of the pain (especially in the winter), I can take a little drive instead.

There will be good days and bad days. On the bad days I've even taught my pony to play football! Horses aren't all about riding - its about companionship and love for the beast. In one way I think we're blessed, we get more time to get to know them on the bad days, than probably anyone else does with theirs.

Not all doom and gloom honest! Enjoy what you're doing - you wont come to any harm and pain can be controlled - good luck x

Gill

I've had to loan my horse out as I couldn't muck out or anything without being in intense pain. I couldn't walk to the field to put him out or bring him in and I couldn't ride him either. I was in hospital for 3 weeks unable to move anything except my left arm and I'm only just starting to recover now.
I have sat on my horse a few times now which is wonderful but there's no way I could look after him Luckily my loaners are lovely and when I go over to see him they tack him up for me and everything.

It's brilliant that you can still do your horse and how exciting about the carriage driving

I'm pregnant now anyway and wondering how it's going to affect me as I now can't take any medication.

 

[ElvisandTilly]

I was diagnosed earlier this year. I have hypothyroid and my FM is secondary to this. I have been able to manage the flare with amitriptyline and making sure I don't push myself just because I'm feeling ok.

During my flares I really just managed the basics with my horse but when feeling more able I used to have to build up my strength again. I am currently sat here with a broken leg so getting all the rest I need and thankfully the stress of a broken leg has not brought on a flare of FM or I just don't know how I would have coped.

I will not give in to FM but I will manage it best I can. I went to a chronic pain physiotherapist and am down to go to a pain clinic to learn how pain works and how to manage it. Cus I have broken my leg I can't go to these clinics at the moment!

 

[Seahorse]

Hi seahorse I posted a thread last night on the me/cfs thread. You spoke about having fidgety legs and arms. I have recently diagnosed myself with fm and had it confirmed (think `ive had it for years) and one of the symptoms can be restless leg syndrome (you can have it in your arms as well, which I have) and have been given some medication to help. I have had it since a teenager (am now 50) and it has got progressively worse. The medication is a godsend although I believe it will need to keep being increased as my body gets used to it. I am worried reading that ms has similar symptoms. Could anyone enlighten me as to how you would know if you have ms. My cousin had it for many many years. Is it hereditary. Hugs to you all who are suffering xx

I'm worried that I have MS too, but my MRI's showed no evidence of any lesions, I also had a lumbar puncture that was clear. But I'm still worried that I might develop it in the future as my neurologist said it was possible that I would.
Worrying isn't it?

 

[gillyfilly]

Sorry to hear about that seahorse, I've fortunately been through that stage (could hardly move for quite a while) and I'm out the other side. I also had a baby whilst having the condition and I was fine, but it did start my irritable leg syndrome - mind you with a baby I wasnt still for long lol.

You'll learn to cope and pain manage eventually, and hopefully start riding etc again. Hopefully research will turn up lots of answers in the not too distant future!! In the meantime, you're not alone - PM me if you ever need to sound off, and good luck xx

 

[hobo]

I gave a rather hurrid reply to seahorse last night but would like to agree with Missy1980 and gillyfilly it is all about not giving in to it. Yes you have to manage it I find if you do a little bit of everything you keep everything working. I do listen to my body and slob on the couch when needed. But I manage to do my work and look after my horses and hopefully get riding again when I wean my foal.
I took amitriptyline at the begining but weaned my self off them i take one athrotec tablet at night and the odd Ibrofin as needed I use a lot of deep heat and udder mint!! So go round smelling like a polo sometimes.
Don't give in to it but listen to your body and you can still enjoy your horses ect.

 

[sydneysmum]

I was told by my first doctor, so what, theres no cure for it. I was so upset. Found another doctor within the practice who totally believes fm exists and he was so lovely. Im not supposed to take anti-inflammatories as I have problems with my kidneys as well. I am on a mild anti-depressant, something for my restless legs (and arm) and something for the pain in my joints. Seahorse, do you think I should request an MRI or a lumbar puncture. It is something that hasnt been offered to me but I wonder now whether I should. Congratulations on your pregnancy, I hope you keep as well as possible

 

[ggray1502]

Hi,

Don't despair too much, it can be a long haul, but once you get the management right you will be able to cope. A lot of benefit can be gained by learning to pace yourself (even if you are feeling OK) and also finding out what triggers you. For example, I cannot allow myself to get cold, if I do I know I will suffer for it.
I have secondary FM, that is, it is caused due to an underlying connective tissue disorder that I have.
Do you know what, if anything has caused your FM? FM in itself is caused through disturbed sleep (they can actually force your body into this state, apparently most junior doctors suffer FM at some point) I firmly believe that most cases of FM have an underlying cause, this could be anything from stress to something like MS. Unfortunately, unless you get a very sympathetic specialist, they will diagnose FM and leave it there, however, it is important that you rule out any other potential problems. I was diagnosed with FM and if I hadn't gone to a physio, I would never have been diagnosed with the other condition I have but by being able to manage this other condidtion, the FM can be lived with.

Sorry this has turned into a bit of a ramble! My main point I suppose is to investigate and learn as much as possible, knowledge is power
One word of caution, I was encouraged to join my local support group but I found them to be very negative and accepting of their condition, this may just have been that one group but it seems that FM is accepted as being debilitating when I am proof that it doesn't have to be.

Yes I have to be careful about what I do, but its more about when and how much not actually stopping doing anything. As I said, it will take time and experimentation but you can get to a stable position where it doesn't limit your life too much.

If you have any more quetsions just let me know.

H

Thanks for getting back to me my consultant just diagnosed me and left it my GP is fab think stress definately makes it worse - finding it hard to make people round me understand how I feel hubby is fab tho. I was going to get in contact but want to stay positive and try to help myself as much as poss. I am waiting for a referal to a holisitic dr on the nhs. Definately finding that I get over tired. Will have a think and pm you some qus
Gill

 

[ggray1502]

Hi seahorse I posted a thread last night on the me/cfs thread. You spoke about having fidgety legs and arms. I have recently diagnosed myself with fm and had it confirmed (think `ive had it for years) and one of the symptoms can be restless leg syndrome (you can have it in your arms as well, which I have) and have been given some medication to help. I have had it since a teenager (am now 50) and it has got progressively worse. The medication is a godsend although I believe it will need to keep being increased as my body gets used to it. I am worried reading that ms has similar symptoms. Could anyone enlighten me as to how you would know if you have ms. My cousin had it for many many years. Is it hereditary. Hugs to you all who are suffering xx

I also had fidgety legs for years and the tiredness took my arm pain and numerous mri scans and blood tests to eventually diagnose it as FM

 

[ggray1502]

Hiya I was diagnosed on wednesday with this Still at least I know why I feel rubbish all the time!

I was relieved to know I wasn't going mad. Had been going to the docs for years complaining of tiredness etc but wasn't till it developed in my hands before it was officially diagnosed. Finding it hard coming to terms with the changes I am having to make - a number of people feel I should give up the horses but it is really my only enjoyment and reason to go out.

Find it so hard to find out what help I can access especially for work.

 

[ggray1502]

I gave a rather hurrid reply to seahorse last night but would like to agree with Missy1980 and gillyfilly it is all about not giving in to it. Yes you have to manage it I find if you do a little bit of everything you keep everything working. I do listen to my body and slob on the couch when needed. But I manage to do my work and look after my horses and hopefully get riding again when I wean my foal.
I took amitriptyline at the begining but weaned my self off them i take one athrotec tablet at night and the odd Ibrofin as needed I use a lot of deep heat and udder mint!! So go round smelling like a polo sometimes.
Don't give in to it but listen to your body and you can still enjoy your horses ect.

I have a foal as well and a number of people at the yard feel I will be too tired/ill to keep him. (have worked with youngsters before so know the amount of work) Had thought of breaking him to drive aswell as riding when he is older.

 

[P4NN]

I have suffered with fibromyalgia as a symptom of my Ehlers Danlos syndrome.

It is a bit of a drag writing my experience out on here but it would be lovely if you check out my blog

www.ifyouhearhoofbeats.blogspot.com

 

[ggray1502]

Thanks so much for all your replies!

It makes me feel so much better knowing that there are others coping with FM and are still able to enjoy horses.

I am very much of the attitude that will not lie down to this, dont want to rely on drugs and want to help myself.

At the moment I am on amitripilyene( this is the only thing that helps me sleep), cocodomol, dihydracodeine, antiinflammatries and vitamins really want to try and come off as many as poss.

I am having a lot of probs with my diet as I seem to have become allergic to certain foods is this normal? Any ideas how you contact a dietican to help with symptoms.

 

[milomoo]

Hi, i dont post very often. It's nice to se I am not the only EDS'er on here!

I have Ehlers Danlos Hypermobile Type which has caused secondary Fibromyalgia. The symptoms of the two kind of cross over especially when I am unfit like I am at the moment.

I had a horse on loan until December last year, I had to give him up due to ankle surgery related to my EDS. I am much worse allover for no having something to make me get up and about everyday no matter how awful I felt.

I am hoping to get another next year from the ILPH, then I know if I am unable to manage the horse will still have a good home to go back to.

The best advice I can offer is to pace youself, even if than means all you do with your horse on a bad day is do the essentail things and save the things that can wait until you are having a better day. If you over do it you will only feel worse for longer and be more tired, I have learnt this the hard way, I manged myself quite ill a while ago, too much activity not enough sleep and not enough good food.

It has taken me 3 years to get my medication right, I am currently on meds for nerve pain I have so much more energy and reduced pain levels.

I hope you get sorted soon. PM me if you need to.

 

[sydneysmum]

ggray1502 I was diagnosed with fm when my husband watched a programme about intollerance to monosodium glutomate. Every time I ate a chinese meal (very high in mg) I would feel terrible the next day. This is what led me to the symptoms of fm. So yes, certain foods can make it worse. The problem is mg is a taste enhancer and is in a great number of foods, sometimes under natural additives, believe it or not. Also every time I ate doritos the same happened, again, very high in mg. Its a minefield isnt it