Hello Spatchie, welcome to the group. My heart goes out to you and your husband, so much suffering, so much pain, with the history outlined above I can see how you could feel like you're on no-hope-street.

But there is hope. A lot of hope, for reducing the pain, increasing daily activity and an overall improvement in daily life. For the whole family.

Don't get me wrong, there's no magic cure, no magic pill that resolves the condition overnight, but with a lot of knowledge, careful use of medication, a very careful increase in daily movement and support from a good health professional (and dare I blow the collective trumpet of this group) as well as being part of a group of hundreds of souls dealing with mps and associated conditions where you can vent anything, ask for support, offload or simply reading others posts - with all of that in place there is absolutely hope.

I'm going to try and keep it brief, try and avoid overwhelming you with information and advice, but there are some things that might be useful.

First and foremost is 'how are you?'. Being a carer can be tough and I hope you yourself are getting support yourself and the opportunity to vent your feelings. If nothing else indulging in a damn good crying session is (clinically) good for the mind; it helps reduce stress.

The history you have related matches many tales of MPS here, myself included. mps is the great mimic, it presents as many other conditions, including a heart attack. The repeated ER trips are something experienced by many people in this group.

MPS is a huge continuum of symptoms and seriousness. Some people experience it in one area and it recovers fairly spontaneously. Some people have it in a few areas and have to work at getting over it. The severity of symptoms (typically pain, referred pain and muscle stiffness / poor muscle function) steadily increase, pain increases, more areas become affected, the body becomes more and more susceptable to further injuries (physical and mental) and over months and years the muscles get harder and begin to stick together impeding movement even more. Basically, the longer it goes on the worse it gets and the harder it gets to manage. (harder, not impossible).

Over a lot of time with severe symptoms the body and brain get overwhelmed by the pain and 'pain', aswell as muscle dysfunction, is felt at a lower threshold. This is the point many people develop fibromyalgia and mental health can deteriorate with anxiety and depression needing treatment.

This severe mps is right at the 'worst case scenario' end of the scale. Treatment needs to be slow, gentle, and preferably overseen by health practitioner. I don't understand the US healthcare system so can't advise what speciality is the best, but input from a pain management consultant can be useful, especially in terms of managing medication.

Many members of this group are also at this 'worst case scenario', neither your husband or yourself are alone with this condition and improvement can still be achieved. There have been significant success stories of people coming back from this level to little or no pain.

I don't know how much you understand about mps but essentially it is a condition where muscle knots form and just stay there, never relaxing and always tightening the surrounding muscles, affecting nerve fibres, blood vessels, lymphatics running through the area which can lead to nerve pain sensations, carple tunnel type sensations, swollen limbs, all sorts of things. These muscle knots spread over an affected area and it's quite normal for someone to have hundreds of the little beasts. They can be felt as little hard nobbles, large hard nobbles, hard and stiff bands under the skin. Sometimes what's felt is a large area of spasmed tissue which through direct pressure can be reduced to reveal the underlying knots. The knots are called trigger points.

The pattern of pain and referred pain is consistent and there are many charts that show both the trigger point and the pain-referral area (for example - I have some trigger points in my arm that hurt there when pressed but primarily refer pain to the side of my head). There are some classic areas that affect the head, neck and shoulder, and would be the best place to start for someone with mps in the area.

The best advice I can give you to start with would be to purchase the ebook at www.saveyourself.ca which covers all relevant: what it is, diagnosis, the science of trigger points, basic trigger point self treatment, advanced trigger point troubleshooting, perpetuating factors, medical factors that perpetuate pain, stretching, getting help, and then the appendices with diagrams, symptom checker and the 14 most common trigger points for specific areas. It's written by Paul Ingraham, a Canadian retired massage therapist who now devotes himself to producing science based information and advice on a number of conditions. It's a huge book for a very small price and is a wonderful foundation when managing your muscle problems. The added bonus is that this author is genuine - you can actually contact him directly to discuss either the ebooks and / or individual problems. He's answered a couple of my own queries within a few days each time.

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Only a couple of really specific bits of information. I had no idea I was going to go on for so long!

Medication: Your husband's taking a lot of pain medication but there's not much for muscle relaxation. Many of us at the worse end of the scale feel much, much better on a regular muscle relaxant essential. For me - I'm taking 100mg baclofen every day (max dose) and even though it helps make my mind feel like mush it lets me move enough to cope with treatment, to function day to day, and also helps reduce the pain.

Massage: I have found that comfrey is soothing to my muscles and also helps relax the surrounding spasms. I use comfrey oil and rub into various trigger points and it makes a huge difference. When I started it (over 1 1/2yrs ago) I couldn't tolerate any massage work, even by me, but I did feel ok just having the oil rubbed over the area. I don't know if it only helps me or not, but it's worth knowing about.

There are lots of wise people here and I'm sure you'll get much support and information from them (it's a lovely bunch) . There are some posts a way back for 'newbies', especially 'jessies posts for new people' and 'best buy'. I'd also suggest you look out for '100% better' from a lady who achieved a total recovery.

I suspect you'll have a lot of information to absorb, it's like that for everyone at first, and wouldn't be surprised if you end up reading resources on mps before thinking of making changes. I think sharing the ebook with your husbands health professional might also be useful (that is if you have a good one) - the fact it's science based gives it high credibility.

Here's hoping you find a smidgeon of hope here from this board and group members. Improvement can be made, even in severe cases like your husbands, and overall quality of life made much much better.

That wasn't remotely brief, was it?! Really sorry about that, I blame (a little) my mind pills as they do make it harder work firing up the brain cells and putting words together!

Hey Spatchie!

Welcome :)

I am sorry to hear about your husband :( That must be so hard to see someone you love so much suffering as he is. Good for you for seeking out help and support on his behalf!

Has your husband tried certified trigger point therapy at all? A friend of mine has had bad migraines for years and is going to try out the therapy this month.

Hope your husband finds relief soon!

~Bio

Thanks Pumpkin and Bio. It means alot to hear from those who really understand.
I think I am much more willing to try new things or be persistent with methods until they work. My husband, however, feels defeated and gives up. I understand why. He has tried many approaches and people actually give up on HIM. When trying physical therapy, he got passed around b/c no one could help and they all said, "We've never seen someone as tight as you...there's nothing more we can do....just do your stretching at home". The acupunturist gave up. Two different (very good) pain managemend Dr's gave up and he is now seeing the most highly recommended pain management guru in Dallas. This guy is taking a more psychiatric approach, but still just dishes out meds as the only means of treatment.
Not sure if you're familiar with Fentora, but last night was one of the worst episodes I think he's had. He took 5 fentora (400 mcg each) in a 24 hour period. Pulse was down to 45 and I thought he was going to OD and the pain was STILL there. Incredible!!
(sorry...small vent there). I came home from work early b/c when he called me he didn't make sense and I could tell he had already taken too many meds. I rubbed his neck/back from 2pm to 10pm with only a few quick breaks (my little hands can only take so much).
I don't want to take the "give up" road, but that is where he seems to be right now.
Anyhow, thanks again for the posts. I work full-time and can't be on often, but I hope to visit whenever I can.

You're welcome Spatchie!

I totally understand where your husband is coming from. I too had insanely tight thigh muscles from MPS and was passed around from physiotherapist to chiropractor to sports medicine doctor, etc. with a bunch of blank stares for years.

I think that once a person has seen so many different types of therapists with no idea what is going on with you, one starts to get discouraged and thinks that no one can help him or her.

Hang in there! Hope is still out there. It just takes finding the right treatment or combination of treatments, I believe.

~Bio

All those 'therapists' should be boiled in oil for their comments. It's not your husband's fault he has such severe pain and it's not his fault 'they' can't fix it. When mps is as bad as you describe your husbands then something happens in the brain and all the 'pain' sections get kind of ''fried'' and don't work properly anymore. It starts to see everything as pain and screams ''pain'' at everything.

I would strongly recommend requesting a muscle relaxant like baclofen be prescribed on a short trial basis by that fancy super-pain doc. In severe cases it's essential in reducing the pain. I couldn't function without it. Many here are the same.

I think I'd also start using comfrey oil mixed with a base oil when doing those massages.

That's where I would start, anyway. I just wish you both find some relief from something, somewhere and sometime now.