Is this normal?

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Is this normal?

Postby JohnM » Wed Sep 03, 2014 8:28 pm

Hi I am a new member to the forum and just thought I would maybe ask here for a little advice.

I don't have Fibromyalgia my wife does, although she has all the pain and suffering it pretty much affects the whole household. She was diagnosed about 5 years ago (she is 50 now) after a few years of problems and being forced to leave her job. She also has DISH disease and has much pain in her back almost constantly.

Over the past 5 years she has suffered terribly with Fibro coming and going every few days, she never really got much respite from it for more than a week. It would confine her to bed or to the sofa and has pretty much taken over her life to the point that she can do very little if anything when it is hitting her.

This past year has been awful and currently she has been hit with Fibro for about 10 weeks solid, every single day with no respite whatsoever. Besides a couple of dr appointments she has been out once in the past couple of months and we are constantly cancelling things that were planned and invites to friends homes etc. She is in so much pain and the 'fog' as I have heard it called is getting worrying as she is just not with it most of the time.

She has had lots of treatments from physio, injections, acupuncture, tens machine etc and has seen 3 different pain management consultants over the past 5 years, the last consultant she saw basically said there is nothing that can be done and she just has to try and live with it.

Her current medication is Butrans patches 20 mg 1 per week, Pregablin 600mg per day, 300 in the morning and 300 at night, Duloxetine 100mg per day, Oramorph for the really bad times, upto 8 paracetamol per day. She can't take things any easier as she does virtually nothing nowadays anyway.

Is it like this for most long term sufferers, does it just keep getting worse and is the current hit of 10 weeks solid normal as the disease develops?

Hope to hear from other sufferers and see if people have similar experience to her.

Thanks and take care.
Last edited by FluppyPuffy on Wed Sep 03, 2014 10:19 pm, edited 1 time in total.
Reason: Split larger paragraph into smaller ones for easier reading.
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Re: Is this normal?

Postby Butterfly8588 » Wed Sep 03, 2014 8:48 pm

Hi John,
Firstly I'm very sorry to hear about your wife, I dont think people realise just how much it affects the family to. I know its not what you want to hear but every fibro case is different especially when you bring other conditions in to it to, I got to the point a few years ago where the pain clinic told me there was nothing more they could do for me besides tablets and I have to learn to live with it. I'm not familiar with DISH disease so I cant comment on that and how it may effect the fibro but I just wanted to offer you a few words of sympathy because sometimes just knowing your not alone can help.

Gentle hugs to you and your family, I hope your wife finds some relief very soon xxxx
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Re: Is this normal?

Postby JohnM » Wed Sep 03, 2014 8:59 pm

Thank you Butterfly for your kind words.

Now I have found this forum I am going to do a lot of reading and find out more than I know now. I always find other peoples experiences a good source of information over what you read on websites (if that makes sense....)
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Re: Is this normal?

Postby Theresa34 » Wed Sep 03, 2014 9:09 pm

Hi,

Fibro is different for everyone. I was diagnosed when things got really bad for me in Jan (diagnosed in Feb) this year. I'm 34 and a mum to three kids. I personally havent been bed bound but there have been times during flares where all I can really do is sit on the sofa. I have to get up no matter what to take care of my kids and get them to school in the mornings. I don't have a choice in the matter. My hubby has to work and my mum works so cant ask her. Especially everyday. In a way I'm glad I'm forced to move as such. The fibro fog for me is getting worse. I've decided that for now I'm going to stop driving as its just not safe. I think its the meds for her and me to be honest. All you can really do is be supportive but I know its hard. My hubby isnt too pleased with it either and he does find it difficult. Fibro is a horrible illness :(
I am a fibro fighter not a fibro sufferer. I will keep fighting from the minute I get up til the minute I go to bed.
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Re: Is this normal?

Postby Butterfly8588 » Wed Sep 03, 2014 9:12 pm

That makes complete sense. Your wife is very lucky to have you in her corner. Take it from me love and support from family is invaluable and I take my hat off to you cos I know its not easy. Good luck xxx
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Re: Is this normal?

Postby stripes64 » Wed Sep 03, 2014 9:31 pm

Hi John
Firstly what a lovely supportive chap you are :) this thing is a nightmare for the sufferer and family.
We all suffer at different levels, what I have learned over the years is stress really piles on the pain, guilt feelings of being a burden all fall into the stress category and make it worse. Personally I found meditation to switch off helps a little, it takes practice but it worth it, anything that will unwind all the knots so to speak, then the next is so hard, very gentle exercise even sat on the sofa, our limbs tighten up so much so some gentle stretching really does help mentally it helps too, ideally visits to a hydrotherapy pool would be really helpful
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Re: Is this normal?

Postby loverliesgal » Wed Sep 03, 2014 9:48 pm

Hi John
I have been diagnosed with Fibromyalgia for just over 10 years (I just did a count and was surprised it has been so long). Your wife seems to be on exactly the same drug regimen that I am on, barring for Amitryptiline (which I can never spell correctly). Before the Ami I too was living in a fog, in incredible pain.

Ami for me when I first ever used it over 20 years ago, would send me to bed to sleep for a week, for some reason, barring getting onto it in the beginning, I am not so foggy during the day. I do find sleep painful and with the butrans patch 2 paracetamol and 50mg ami, I do go to sleep until the pain wakes me. Pain that is indescribable, where I am too scared to move because I know its going to hurt so much more. Next door neighbours must think hubby and I are at it most of the night with the moans and groans coming from me. On a different strand that part of our life is few and far between and needs addressing.

I have notebooks everywhere for writing things down. I have a calendar on the wall, my phone and my laptop all synchronised to tell me of appointments, with hubby double checking for me. He has given up work now to be my main carer, its a struggle to be honest and I am aware he must be bored witless having no other human interaction with anyone else bar me and immediate family.

For me I have gradually got worse, having good times, like last year when I nearly had 6 months where I was nearly normal, but the payback was this years non stop pain cycle. I do have other conditions, but on further reading they too can come under the 'fibro' umbrella which is getting bigger and bigger. Ignoring the pain and carrying on, for me, has made me worse and bad times even longer. So I now stop at the first twinge, check I am up with my meds ( I now have a dosette box so a lot of the thinking what I am taking and when has been sorted out for me.) then I rest, four or five days of pain I can cope with is a lot better than a fortnight of agony because I ignored it.

I got lucky with my hubby, just as your wife has with you. Understanding, or trying to get an understanding of what this Fibromyalgia is, is the best thing a carer can do. I hope your wife has a lot more good spells, and less of the fog and pain.
Last edited by FluppyPuffy on Wed Sep 03, 2014 10:22 pm, edited 1 time in total.
Reason: Split larger paragraph into smaller ones for easier reading.
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Re: Is this normal?

Postby Gracious » Wed Sep 03, 2014 9:51 pm

John, the question you ask 'is it normal' is hard answer, in that no two individuals with Fibro are alike. There are so many symptoms that people can suffer from with this condition and they can change moment to moment. What I can tell you is that there are categories to deciphering the level/extent of your Fibro. Individuals can have Mild, Moderate, Severe or Extreme states to this condition. On a pacing scale, mild would mean the individual what have about 6-8 hours in the tank for the day, for Morderate about 4-5 hours, for severe about 2-3 hours and for extreme about an hour. Establishing where you are in the scale helps and when you work within your range it helps to reduce flare-ups/crashes/post excertional malaise etc.

I can use myself as an example to help explain. I fall into the 2-3 hours most of the time. Now that does not mean in this period I am symptom free, it means I don't add to my condition and make thing worse if I keep to this range. But this range can be reduced depending of the activity and exertion required. So if I were to read, I wouldn't be using as much of my energy and body as I would be if I was to go a walk. So depending on what I have planned in my day will depend on how quickly I drain the tank really. It can take a bit of time to figure out when you have pushed to far, and you'll know because it will trigger a crash. In addition there are contributing factors with stress, viral/bacterial infections, having operations, work, big family days, etc these can all trigger flares, which can last for variant amounts of time.

In my own past experience I have had flares last for a couple years, 6 months, some for 3 days, others for just a few weeks and each flare-up can trigger different symptoms too.

I have been working with symptoms for 24 years, but only got confirmation of the condition last year, when I went into an extreme state after an operation, only then was it finally identified, but over the 24 years, I have had periods of being mild, moderate and severe too. In my early twenties I would have been considered as mild, in my late twenties being a moderate level, with flares-up, in my early thirties, I went back to mild, then in mid thirties I was severe, then extreme, then back to severe. Like I said FMS is so changeable.

Now we are told it is not a progressive condition, but if you are having flares and experiencing them for long periods then this will result in muscle atrophy and other health changes as our bodies arent designed to be in bed all the the time, so inactively has an impact. It is this that creates the potential for progressive change in health. Unlike health individuals someone with fibro can't just bounce back and hit the gym and get that body bounced back to full peak condition. Thats why, its important to know where your level is and work proactively within that range to reduce as much as possible self enflicted flare-ups and crashes and that gentle and small amounts of light exercise are recommended to hold onto as much muscle and cardio strength as is possible.

It sounds like you wife may being going through a symptom change and you have to work with that change and no battle on through it as this will only result in becoming worse. There is no guarantee or certainty with Fibro, you wife my stay at this level for a while and then improve or she may improve sooner, or she me not improve but stay the same, or get worse...there is no certainty.

My best advice would be to seek another opinion and get fresh eyes onto it. Since your doctor has hit his own personal wall. I have found after a while when doctors can't get you stablised they get stuck and seeing another doctor even within the same sugery can sometimes help, if only to assure you that everything possible that can be done to support your wives needs are being met.

I hope this is of some help.
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Re: Is this normal?

Postby denys » Wed Sep 03, 2014 11:00 pm

I cant add much to what has already been said, but if possible your wife needs to move a bit more, not excessively just a little bit each day, sitting still not moving makes everything much much worse when you have to move (go to the loo or something) as the stiffness and pain intensify exponentially :yikes: :yikes: :yikes: :yikes: even if its just to change position maybe move to another chair or room. Maybe you could get her to join the forum herself and then she can ask questions about things she is worried about.

It is so important to have understanding people around us and so you are doing a great job already :-D :-D :-D :-D
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Re: Is this normal?

Postby FluppyPuffy » Wed Sep 03, 2014 11:04 pm

:welcome: to our FibroFamily John :cow-wave: :cow-wave: :cow-wave: And :welcome: to your wife as well :cow-wave: :cow-wave: :cow-wave:

I've moved you over into here with this being your intro topic, I've also done a little editing of a larger paragraph in your post to make it a little easier to read for some of us. One of the gifts FM bestows upon some of us is problems with reading larger blocks of text, so splitting it into smaller paragraphs means we have a better chance of making it thru a topic without getting lost and reading the same bit over and over again.

I hadn't heard of DISH disease, so I asked Dr Googley about it. The linky explains a little about the condition should anyone want to know a little about it.

From the replies you've already read, you've probably realised that FM and "normal" don't tend to go together. Whilst we tend to share a range of symptoms and problems, the way in which they affect each of us is very different, which contributes greatly to the difficulties in trying to treat/manage the condition.

Reading what you have said about your good lady, along with the effects DISH disease can have, it must be very difficult at times to determine which problem is flaring up and causing the greatest distress.

Due to the vagaries and unpredictable nature of FM, saying how things are/might be in the long term for anyone is difficult as no~one knows what will happen to them next. Reading previous posts from members, what I can say is that things do change for us over time, and in a lot of instances, the changes aren't in a way that we would like them to be, with things taking longer to do/finish, severity and frequency of flares increasing, and finding relatively simple tasks almost impossible to manage at times. As for whether this solid 10 week run being how things usually go, I think we might have better chance of determining the meaning of life by splitting the beer atom compared to answering the original question. I've been part of club for over 14 years, and in that time I haven't had a single day free of FM and the way it has wrapped its tentacles around me.

Sorry there isn't a definitive answer as to whether the things you have mentioned are normal for your good lady :( :( :( :( :(
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Re: Is this normal?

Postby Theresa34 » Thu Sep 04, 2014 9:11 am

denys wrote:I cant add much to what has already been said, but if possible your wife needs to move a bit more, not excessively just a little bit each day, sitting still not moving makes everything much much worse when you have to move (go to the loo or something) as the stiffness and pain intensify exponentially :yikes: :yikes: :yikes: :yikes: even if its just to change position maybe move to another chair or room. Maybe you could get her to join the forum herself and then she can ask questions about things she is worried about.

It is so important to have understanding people around us and so you are doing a great job already :-D :-D :-D :-D


I second that x
I am a fibro fighter not a fibro sufferer. I will keep fighting from the minute I get up til the minute I go to bed.
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Re: Is this normal?

Postby whoami » Thu Sep 04, 2014 10:32 am

John.....you truly are a partner in your marriage.

People tend to forget that fibromyalgia as well as any chronic illness belongs to the whole family, not just the one that has the fibro symptoms. This is your illness also and you have your own symptoms to deal with.

What is normal for fibromyalgia? Nothing and everything. It is so complicated, new symptoms appear, old ones leave only to return. I have been diagnosed 25 years and I am learning new things daily.

My symptoms change, I won't say get worse or better but change as my ability to control them through meds, excersise and general attitude. If my pain gets out of control, usually because I have not listened to my body, then my mood/attitude changes and so the circle begins. One feeds the other until there is a change made to control things.

What your wife is going through and sadly yourself, is what I would say is normal. Never knowing when a flare will start and for how long. Not knowing the symptoms that will show today.

I would discuss all the meds your wife is on with your Dr. The Butrans is a low dose and may need changing. Her other meds could need adjusting. Only your Dr can sort that out for her. It took years to find the right meds for me that makes life tolerable.

Things like hot baths, Epsom.salts in it as well as Arnica gel help with pain.

You sound a lot like my hubby, loving, thoughtful and involved. You both need each other for support. We were married 6 months when I became ill.

I hope your wife can find some relief and you both will feel less stress.
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Re: Is this normal?

Postby JohnM » Thu Sep 04, 2014 10:38 am

Wow are you lot a happy friendly bunch or what :-D

Thank you for the all the replies we really appreciate it, I had intended to reply to each post personally but you guys have written us so much great info that I would be here all day doing so....so thank you all very very much it is appreciated.

So the clear consensus is that it affects everyone in different manners and unfortunately the wife having DISH adds another anomally to the equation. DISH is an arthritic condition of extra boney growth on the spine / discs, when you look at her scans it looks just like candle wax pouring down her back and affects about 35% of her back mainly at the top. The back pain is pretty much constant but it is now clearer to her to be able to differentiate between the two.

Theresa34 I do not how on earth you can cope with 3 kids, I feel for you, ours our 20 and 22 now so easier and they do give help (a little) but I would have hated to see my wife like this whent he kids were young, good luck.

stripes64 thanks for the mediation tip as it is something we have not thought about but will look into now. The hydratherapy idea is unfortunately a no no for her, we have tried it and each time she was in an awful state afterwards so it makes her worse and with the DISH disease it means she can't raise her arms above her shoulder so light swimming is out.

loverliesgal thanks for your thoughts and understanding, I am going to mention the amitrypline to the dr on our next visit and she what the dr thinks as not heard of it before.

Gracious thank you for your kind thoughts, you seem to make it clear that it is is not clear, lol but your mild, moderate, severe and the hours etc make sense and maybe use this to help planning things, thank you.

denys, moving and small amounts if exercise is what the consultant suggests, she just finds it near impossible most of the time but we do that it should be done more and will try to get her moving more than she is now, thank you.


Hi FluffyPuppy (such a great username) for the welcome and moving me around. I will take note of the shorter paragrapghs as I understand it is so much easier to read. Thank you for your kind words.

So plan for today is to do a lot more reading here of other peoples problems, suggestions, solutions etc and see what can help my wife.

Thank you all again so much for your kind words.
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Re: Is this normal?

Postby JohnM » Thu Sep 04, 2014 10:46 am

Thanks whoami, I am glad you have a supportive hubby to.

I think I see there is no such thing as normal and all the problems that come with fibro can change each day. I am going to make an appointment with the dr and ask about her meds, the butrans they are reluctant to increase too much they have been upped form 10 microns to 15 and then 6 mths ago to 20 but I am also worried about them not being as effective as her body gets used to them. Like you say it is a trial and error thing with meds to get what is right for you so maybe we will experiment with the dr's advice.

The tip for baths is a non starter now as the DISH disease made it impossible to take a bath and we have now got rid of it and made a wet room.....but I do miss y bath...

Thanks again.
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Re: Is this normal?

Postby Theresa34 » Thu Sep 04, 2014 12:08 pm

John I am fortunate that they're getting more independent. They're 6,10&12. I don't know how I would have coped with fibro and a baby or toddler! As for coping, the main issue is the stress they give me when they fight all the time. Other than that, they can make their own breakfast and lunch, dress themselves, bathe themselves etc. I got lucky only being diagnosed this year which is when the illness appears to have strict me although I've had back pain for years, possibly an early sign x
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