h2g2 The Hitchhiker's Guide to the Galaxy: Earth Edition

My wife has had this, unrecognised for the first 25 of 29 years and still only tentatively diagnosed . It started with a slipped disk/back strain. She was put into plaster for 6 weeks (the standard treatment then, although on its last legs).
When nothing else worked they suggested a myelogram to try and locate the problem. It is an x-ray using an iodine-based water-insoluble dye. It went wrong. For a start they are meant to remove enough dye so it doesnt react with the tissue; they didn't. Then they moved her from one hospital to another 10 miles away for the test and moved her back too soon after, insisting that she lay down in the ambulance. The recommendations were sit up for at least 12 hours after to settle any residual dye at the base of the spine. Finally they put her back on traction immediately; result - she lost vital fluid from her spine and brain, but the dye had travelled up her spine so it wasn't discharged.
Result - permanent pain, neuralgia, migranes, and because the pain reduced her ability to exercise, muscle wasteage.
How did I cope? Until 16 months ago I had a strong Christian faith - I was a Reader (that is a kind of Lay Preacher). We had two kids we, but often I on my own, had to bring up. I had to give up my career - farming - because I could not cope with the hours. We always managed to have some hope.
Now I can't cope. I have seen her personality change so she is a depressive (I always have been, but faith and strong music kept it at bay). We haven't had a sexual relationship for so long that I could not restart one if she recovered tomorrow. We hardly touch; in fact the only way i can cope with her is if she doesnt touch me; anything physical creates major tensions. Have I thought about leaving? Yes. Have I thought about an extra-marital relationship? Yes.
The strange thing is that acknowledging I can't cope has enabled me to do so. I no longer think about the effect my actions may have on our relationship so feel more relaxed
I shall be 60 soon and although I don't recognise aging as a legitimate process, it has clarified some of my philosophy. I think I used to need religion to help me cope with living. Now death approaches, I no longer need that support. Everything has the opposite effect on me to most people. Maybe that's the secret of my ability to cope. I am so different that my thought processes work against the norm enough to keep me sane.
Or perhaps it is because I have encountered other people here who are also able to think differently.

I am sorry to hear of your situation. I am only 41 but I can empathise with your feelings about your relationship. I too have forgotten any attempt at a normal physical relationship. We sleep in different rooms because it is the only way that my wife seems able to get decent rest. My sleeping habits are different than hers and she needs everything done to her specifications. I have been unable to adapt.

The important thing to concentrate on is that your spouse has not "chosen" this life style. She didn't do this to you. I realize that this does not compensate for the loneliness and isolation but it is a disease and there is little she can do to stop it.

Good luck.

I don't know if you guys are still reading these messages, but here goes anyway:
Wy wife was diagnosed about 6 years ago, we have been married ofr 3 of those six years. I am 25, and she is currently 32. I am interested in the idea of regarding Fibromyalgia as a serious illness for two reasons:

1) It does emphasise more properly the importance of regarding the disease as something beyond the control of the victim but;

2) It lends an air of fatalism. To my mind, it is a relatively little understood conditions (in this country at least, the US seems to be streets ahead) but I am determined to explore every concievable avenue towards treatment and management of the condition rather than regarding it as something we are stuck with. I find, for what it is worth to anyone else, communication and total honesty has been valuable, as well as the importance of regarding myself as a carer (something I am struggling to accept) and therefore as someone who has need and issues of my own. I wonder if too many spouses try and cast themselves in the role of the 'non-victim' is that makes sense and put their own feelings and anxeities second, unnecessarily.

Hi
what a refreshing read, I have had FMS and in the early days did all the test's tried the differnt treatments, even went private in the hope that they might know something, over a £1000 later no difference! I have heard recently, that there is a spray, o24 fibromyalgia, don't know if you have heard of it,it came from the USA, can be purchased from Ukfibromyalgia, support group, I don;t know where you live, I live in the medway towns and apparently there are support groups all over the uk now,Now I am in the process of getting the new DVD "show me where it hurts" this is also from the USA but if you know of a support group you could borrow it from their library. they do say that they have a cure, well I am opened minded of this, but the people live in the UK, surely its got to be worth a try, so see if you can get hold of the dvd, there is another one called living with FMS I have seen this one and although I didn't feel it did me any good, it could make the partner feel guilty as it does confirm that fms is a real disease that effect the nervouse system and brain scans can now confirm this. sorry i am again running away with myself, its so nice to be in contact with somebody who is at least aware of what I am going through.I hope I have helped, and good luck to you and your wife for the future as it is becoming a little brighter now

Hi there. Sorry for the slow response, we moved and it took tiscali about a year to restore our broadband signal. I have just finished reading a book (again, from the US0 about fibromyalgia and 'trigger points' which I have found very useful in helping Clare with some of her symptoms. We live in Eastbourne and money is a bit tight at the mo (we get books secondhand from abebooks.com) but I will look out for the DVD, thanks.

Hi
It's tough on every one that comes in contact with this fowl illness.
Do your best that's all she would ask. And love her.
Sex is a tricky one is it possible for someone to have casual sex outside of the marriage without damaging it? you might need to discuss that with her. Can you talk to her about it honestly? without parting blame? some people open up their marriage for other less valid reasons.
The danger ofcourse is falling for someone else...
For me it's not a question of sex it's a question of loyalty and honouring your comitments.
Big decisions to make and i am not gointg to tell anyone what to do or how to behave. Just raising some points to concider. Whatever you come up with good luck.
While you are thinking about it have and a slice.
Fibromite
Aspera

Hi
Sorry to hear about your situation I am a fibromite my self.
However it does affect the spouse and the people nearest to us.
You are right not to make yourself a martyr. In the long run it doesn't
pay off.
Wishing you both well.
In the mean time put your feet up and have a drink or two