Heather, I share this with you as someone with a long-term diagnosis of CFS, plus a recent label (explaining the longer-term illness) of FM. It's not all my problems, but there is no one diagnosis that doctors have agreed on, even after I've had this for - 27 years! (but don't panic - I've known people who have recovered from this, in fact most of the people I've known with this have greatly improved, if not recovered).
The only medication I am truly allergic to is Plavix. But, every time I try to tell them about the medications that I have an adverse reaction to, they just cut me off and stick it in the allergy list. So, I save my breath now.
Taking this into account, plus the possible "difficult patient" tag you may have - you ARE seeing a new specialist so you need to inform him. So I suggest you still try to inform him accurately, but concisely.
What I do - I have my own list (I actually wear it on a strip of paper inside a medication-alert medallion around my neck, I take them a copy or if I forget, I take out my strip of paper for them to photocopy). My list has two lines - the first is allergy (defined as causing urticaria plus at times throat closing over). The second is sensitivity. In my case, the sensitivity reactions are all the same - gastrointestinal symptoms. So it's easy for me to divide the list of "I can't take this medication" into two.
The important thing with doctors, especially new doctors - they need everything presented almost in point form, as briefly as you can but as accurately as you can. When I was regularly seeing doctors about my CFS (or whatever we want to call it) I routinely wrote it all down. I finally took to faxing it in to my specialist a few days before.
Now, I have to tell you - I had one of the top specialists in the world, on CFS. I've met many of the others when they came to Australia for conferences. I learnt a great deal. I've mentioned on this site how I learnt my editing/publishing skills working for a charity - well, guess which one. I was very hands-on with this mob for about 8 years, until for various reasons I had to get out. One big reason for me leaving - I was losing personal perspective; you can't immerse yourself in a world of illness and not have it affect you.
But I had the best specialist (and he bulk-billed! Nothing to pay!). I'll call him the Professor. However, he finally retired. And he had such a huge patient caseload, that when he retired, he flooded the market. I still have not been able to get another immunologist. But what I have found - I don't need one, except in emergencies related to my allergy problems. And I HAVE been referred to an infectious diseases bloke for tat, who works on me case by case, when I get a bacterial infection that needs antibiotics. My infectious diseases bloke isn't interested in the CFS stuff, but he WILL give me emergency practical help. And frankly, that is more use to me than a doctor trying to help me with something that no doctor can help me with.
The Professor was marvellous, he was really good at boosting my confidence (hey - you reckon he overdid it a bit?) and was also good at the stuff my Infectious Diseases doctor works on now. So I guess I've partly replaced him. But the Professor also used to say, "We can't fix this completely right now. All we can do is work on the bits we can work on."
Over the years I was part of several research studies. However, most of the time all I could do was look on. But over the years I also saw a lot of really bad stuff happening, in terms of patients being exploited. The Professor and his colleagues were legit researchers, they had cred when it came to research in general (not just CFS research). They knew how to do it. But I saw other doctors coming out of the woodwork who may have genuinely wanted to help patients with CFS, but despite the fact they could talk the talk, they weren't able to actually DO anything either. Because nobody could.
Yes, some patients recovered. And whatever they were doing at the time, got the credit. What I observed that helped - multivitamins helped. Fish oils helped. Various oily vitamins and supplements helped. But what helped most of all, according to the Professor, was having a positive mental attitude towards life in general. And depression doesn't have to get in the way of that, because I also get depression at times, as well as getting depressed because of this rotten (and very painful) condition.
The mental attitude isn't something you can switch on, not until you have dealt with the anger and the grief over being ill in the first place. I mentioned in my previous post, that you need to work towards an attitude of, "I have this condition, but I'm not going to just sit around with my life on hold, waiting to get better. I AM TAKING CONTROL."
Another important thing to know - THERE IS NO CURRENT CURE. NO DOCTOR HAS THE ANSWER. Some doctors will tell you they can cure you - I've heard this, often. I've seen various public advocacy groups burn up precious energy fundraising for these doctors. WHY? I exposed a few of these doctors who were doing the wrong thing and (I believed) exploiting their patients and the families, in their 'research' (which I never saw achieve publication, by the way). I could tell you some horror stories of exploitation by doctors. I am tiptoing here in my wording, I am risking outing myself here, I will happily PM you if you want more details.
So what can you do for yourself, if there is no cure?
YOU CAN DO A LOT. You are probably already doing more than you realise.
So here, in a nutshell, is how to manage your FM/CFS.
1) MANAGE YOUR SYMPTOMS. You deal with them one by one. In pain? See a pain specialist and do it properly, if standard pain medications are not working well. Fibromyalgia? Add a rheumatologist to your stable of doctors. Nerve pain? Find a neurologist who is a bit more adventurous than most.
2) STICK WITH YOUR DOCTORS; CONTINUITY OF CARE IS VITAL. You may have to shop around until you're happy with your doctors, but once you have them, keep them. Any problems you have, sort them out. There will be times when you felt you weren't heard properly, but you need to sort them out. If you feel your doctor doesn't accept the CFS tag - good! Yes, that is good, because then that doctor will keep looking for a cause. And you do not want CFS to get the blame for everything, because I have seen it often - other nastier conditions got missed, because of the CFS tag. For example, my neurologist doesn't have a label for me. He won't call it CFS. He keeps saying, "I'm sure this is MS!" and goes looking, but can't find it. That's OK - I'm happy for it to not be a bad case of MS. It also helps me to know that my condition does resemble MS so closely, that my doctor keeps thinking in that direction. It helps me understand my own condition better. A different doctor, my rheumatologist, I first saw only two years ago because my pain in both hips and shoulders was getting out of hand. It's a fairly new problem for me, so I wanted answers outside the CFS tag. But after tests and treatments (which didn't work), he declared that I have FM and that means he can't help me. Now, I have known FM patients who regularly saw a rheumatologist, so one telling me that he can't help me with FM has me looking elsewhere. I also felt my rheumatologist was a bit too needle-happy - every time I left to pay my bill, his receptionist would say, "And did you have any injections today?" I heard her say this to every patient. When I had my last injections, they were NOT done in a doctor's rooms but under ultrasound guidance, as they should have been the first time.
The most important thing with continuity - ensure your files get forwarded. When you have a problem medical history like ours, it is too easy for doctors to get dismissive (especially if you get a "difficult" label) and if you turn up out of the blue with no history or a reluctance to share past details, it is a red flag for Munchhausen's. And you don't want THAT label!
3) BE A COOPERATIVE PATIENT. That means that if he wants to send oyu to a shrink for counselling or to find out if you really ARE a Munchhausen's case, you cooperate, even if you think it's a waste of time. it is better to go along with it and prove the doctor wrong, than to pull up stakes and move on. You will do better with hurdles known to have been dealt with, than hurdles you avoid and which therefore keep getting put up in front of you, time and time again. Deal with it all, no matter how frustrating. I did - and it feels good to be able to point to my psychiartist's report that says, "Whatever is wrong with this woman, it's not the cause of her physical symptoms."
4) KEEP AN OPEN MIND, THINK OUTSIDE THE SQUARE. I just saw an interview on TV about a woman who is coming to the US to peddle her book, "the Clothesline Diet". She lost 70 Kg by working it out for herself, including exercising by walking around the clothesline. She was too embarrassed to go to the gym, but didn't let that stop her trying to help herself. Also, if you have this attitude, you will find that the doctors you end up with also have an "outside the square" attitude. Like my neurologist - he's a bit off the wall sometimes, but he's been able to help me with this symptom, or that, by suggesting different ways to cope.
5) HAVE ONE GOOD DOCTOR YOU TRUST, TO BE THE SPIDER AT THE CENTRE OF YOUR WEB. You will develop your own stable of doctors and each will deal with his own special area of expertise. The neurologist. The pain doctor. The physiotherapist. But they all need to report to your GP (a GP for preference). You need a GP who believes in you, who will keep good records, who will continue to try to help you. A GP is a generalist, they holdall the strings. A specialist tends to only deal with his own area. The Professor (I mentioned him earlier) was unusual - he was a specialist who also dabbled. For a while he was also my spider in the middle, when we were between GPs.
With all of these steps, you COULD see a specialist clinic, especially if you don't currently have your own stable of specialists or even a GP you feel wants to help. Even if he doesn't know anything - frankly, that doesn't matter, he can learn as he goes. You both need to have the courage to learn together about YOUR brand of FM/CFS. A specialist clinic could be really helpful; or it could be an expensive rip-off. If you maintain continuity with a good GP and keep him informed, you are safer from being ripped off. It's no guarantee of protection, but if you will be guided by your doctor and he remains a healthy sceptic, you should have less chance of being badly exploited.
With the vitamins etc I suggested - you COULD take what a specialist clinic prescribes. Or you could work it out for yourself. I have seen equal success.
My own current management - I did my utmost to stay with the same GP practice, although there were about five different GPs I had to deal with. It became more difficult when the last GP sold the practice and it was amalgamated with a larger clinic. I managed to stay with tis GP for another five years until he left general practice entirely, to become a specialist (in addiction medicine, possibly adding in pain management). He actually handed me my entire medical file, as well as the entire files of each family member. I then had to pound the pavement to find a replacement GP, and fast - I have prescriptions which MUST be written by the same GP, every month without fail. Paperwork has to be filled in first.
My new GP was someone I found by chance, but I have faith in her. She scanned my entire history into her computer.
And now we have (at last!) a good GP in our village. But it will be too difficult for me to change doctors. So I see the local GP sometimes in an emergency, but make sure all information and results are sent to my main GP.
The Professor retired. We still see him on TV form time to time, spokesman for this or that. HE's working entirely on research and teaching now. I still haven't found anyone to replace him as my primary specialist. This was a bit scary at the time, since I'd had the Professor on speed-dial on my phone. We'd weathered a lot of years together. He'd seen me at my worst, contemplating suicide.
But what I have found since I was "cut loose" - I CAN do it on my own, just as well. In all the years of my traipsing across Sydney to see Professor, he actually didn't improve my physical condition one bit. He saved the day a few times, but I have found others (a number of others) to take the place of this one genius.
Over the years I've occasionally met CFS patients who were managing their condition on their own. some of them recovered, on their own. Of course they had a formal diagnosis and managed under the care of their GP, but the GP didn't actually do anything more than monitor. Frankly, nobody CAN do much more than monitor.
So how do you manage day to day?
1) EXERCISE BUT DON'T OVERDO IT. Do what you can, but don't over-extend yourself. Try to make sure you get some physical exercise every day, even if all you do is - walk around the clothesline! Stretching exercises are good. I've begun seeing a physiotherapist who has given me some incredibly gentle exercises (you barely feel you're doing anything) and these have helped my pain amazingly; I've recently been able to cut back my pain medications. But if you push yourself too far, you risk aggravating your pain badly, then you rest up, then you don't exercise, then you have to start over. So slow and steady is better than pushing to the pain barrier.
2) EAT HEALTHY. This is important. Eat a healthy diet, look after your body, give it the fuel it needs to do the best it can. Keep it simple. Remember - the Western diet has too much salt, too much fat, too much carbs. Too much sugar. Often, too much protein. You should limit your protein to a piece the size of the palm of your hand, at three out of four meals a day. Eat at least a dozen different plant foods a day (yes, fresh herbs count). Cut out all refined carbs and switch to wholegrain sources. In other words - grain bread, not white. Brown rice, not white. If you're not burning up all the calories you used to, then cut the calories back. They only slow you down anyway. Take vitamin supplements - feel free to source your own (I take Berocca - B group vitamins are ones I've seen help people a lot, with CFS). But keep your doctor informed.
3) DRINK WATER. Don't overdo it, but 2 litres a day is the target. That's 2 litres with no sugar in it. Water helps your body cleanse itself, which you need if you have CFS or FM. I think that's why green tea is something that's supposed to help - I find it's easy to drink a lot of it, and you drink it with no salt or sugar in it.
4) LIVE. Just get on with what you can do. If you can't go jogging any more, walk. If you can't walk, then find some way to get outside and talk to people. Get out into the light of day. Rest when you need to, of course (I plan rest breaks all through the day - I actually physically rest a lot, I have to, but I still get a lot done). Use your brain. Keep it exercised. Try not not let the frustration get to you, but find ways to deal with it. I found relaxation methods helped me a lot, but I've worked out my own that work for me. Same with everything - work out your own treatment.
if you want to go to this clinic, then do it. But don't pin all your hopes on them curing you, because nobody can. The world is moving on, constantly, while we try to struggle with our illnesses. We can't put our lives on hold while we wait to recover - we have to live NOW, with what we've got.
It's all we can do. But it can be a big ALL.
Marg
