Is depression common with TAM?

[asiewert]

I was diagnosed with TAM 3 years ago. I have been in contact with several 'fellow sufferers', and it seems as if it is very common that neurological depression afflicts us. In fact, my major problems include severe muscle pain, muscle wasting, fatigue, and DEPRESSION. I don't know if there is a biochemical / physiological reason for the depression, or if it is because I constantly deal with pain and I see my muscles deteriorating. And, there seems to be nothing that I can do to reverse or halt the insidious progression. I guess that would make any one depressed, but - for me - the depression is harder to deal with than are the other aspects of the disease.
I was just wondering if others have been dealing with depression, and if so ... has there been any particular treatment which has helped?

[georger]

Thanks for starting this thread. Hopefully you this will be a useful discussion of one of the most important aspects of chronic disease.
I am not aware of anything in the medical literature specifically linking TAM and depression via biochemistry. However, as you say, who wouldn't be depressed? A doctor once told me that normal folk are affected psychologically by severe chronic disability; it is abnormal not to be affected. On top of that I think that there are some features of TAM that may tend to attack the morale more severely. Firstly there is the often lengthy process of getting a diagnosis and then you find that your doctors know nothing about TAM and are told "there is no treatment". Then there is the savage intractable pain that is such a feature of some forms of TAM. And there is the progressive and uncertain nature of TAM. Say you are permanently injured in an accident, with any luck you go through rehab and the grieving process and eventually adjust physically and mentally to your disabilities and get on with your life. This process goes on and on and on with TAM. I find that every time I have a setback or worse have to abandon some activity there is feeling of "Here we go again, won't the damn disease ever let me alone". As well as the continual physical adjustments just to maintain your independence there is a kind of serial grieving for what we have lost.

So, what to do about depression? Of course, unlike TAM, depression is very common, a lot of is known about it and it is often eminently treatable. It seems to me that depression as a reaction to TAM should be treated much like any other depression - appropriate medication and counselling, but there can be a bit of trial and error to find the right ones. I will talk to someone much more knowledgeable and add to this. You will have seen much of the info on the net. Have you seen www.beyondblue.org.au/ which is part of the Australian Government's national depression initiative?

[georger]

I have spoken to someone with clinical depression who has supplied this:
"I have found it very useful to speak to a professional on a regular basis because
- they can give you a sympathetic ear to the practical difficulties you face day to day living with a chronic illness
- they acknowledge the reality of the physical and psychological problems or pain of such a situation
- they can offer practical suggestions for coping with such difficulties, or other ways of looking at the situation
- when something bad happens, just knowing there is someone you will be able to talk to about it later does help
- in between sessions (say monthly) I find myself mentally describing difficult situations to my therapist, which helps sometimes get things into perspective
- I also sometimes imagine what his response might be, which also gives me another perspective on the situation."

[georger]

Suddenly I have a very personal interest in this topic. Have had a very serious advance in TAM and the black dog of depression is after me. Knowing not a lot about depression, as always I am looking at the research and find that there is quite a bit on coping with progressive disease. I guess that the positive side of this is that we move into the mainstream with this topic instead of the backwater of TAM. There must have been tens of millions folk down this path before us versus only thousands with TAM. Will see if I can summarize the research.

[Craig Lane]

You mention serious advance in TAM, are you back on your wheels ? Black Dog is a b!tch and dispite my flipent attitude to the daily ups and downs we all are subject to the snapping of the BD. The lonliness and pain of a disorder suffered by few and understood by less is for me the underlaying reality. And some days the b!tch does bite. Strangely all the things that I found hilarious the day before seem purile and irritating. Somedays I just hide away others I find some comfort usually in my animals they are unconditional in their affections. They don't judge or try to comfort they are just in the now. If all else fails do something stupid and out of charactor. Break something it puts new value on what you have left. Fix something it put new value on self. Eat chocolate and watch your fav comic, cartoon or stupid show. A boost of seritonin can ward off the b!tch enough for you the take control back.
My driving force not to give in to the b!tch is admit to being depressed and they take away my guns. Not going hunting from choice is favourable to not going because the cops ripped my ticket up. I enjoy the idea that I can go when I want. Even if the reality is I probably wouldn't get over the first locked gate. It's good to have somewhere to go in your head where you feel good and the sun is shining on your world.
Sorry Pete that was a bit serious, normal service and flippency will be returned to as soon as possible.
I'm looking forward to the fishing season and the sunshine and catching a huge salmon (which will probably pull me in the river)

[georger]

I have had a fairly general decline, hands, shoulders, back and legs. Happily am still walking but not very well.
Sorry to be medically nationalistic but there is another Australian site, the Black Dog Institute. They make the important distinction between "depression", feeling down, the blues etc and depression as an illness. The first we can probably deal with to an extent with help and understanding from those around us but the illness requires professional help. See:
www.blackdoginstitute.org.au/public/depression/depressionexplained/index.cfm
and highly relevant to us TAM folk:
www.blackdoginstitute.org.au/public/depression/inthemedicallyill.cfm

[georger]

PS Encouragingly the Black Dog folk say this, " It's important to know that depression can be successfully treated and that you will feel better in time and with the right treatment."

Thanks Craig for your personal account. I have a lot of trouble talking about this on a personal basis so that was particularly valuable.

[georger]

To answer your original question, there are a few diseases which cause depression probably by upsetting seratonin levels in the brain or the like but there is no evidence that TAM is one of them. Had a look at the research and did not find much other than a Swedish finding that morale is unrelated to level of disability but is related to social factors such as meaningful occupation, social networks, feeling of worth, that sort of thing.

I have been talking to a lot of people and even those with seemingly intractable depression who live with it on a daily basis say that it is eminently treatable. That is to say treatment allieviates the symptoms but may not be a cure. You have just got to find the right treatment, being antidepressants such as the SSRIs, the talking therapies such as cognitive behavourable therapy or both. Finding the right antidepressant can be a rocky road for some folk in that some may even make you worse or have side effects. Similarly with the talking therapies, you have to find a therapist and method that suits you.

Good luck in keeping ahead of the Black Dog and his cousin the blues.