What helps one person may not help another but it's worth trying a few to see what suits!
- 1st Class SleeperI went to the theatre for the first time in years while away for the weekend in Brighton to the Brighton dome.
I found the seating in the theatre very uncomfortable and had to take extra pain medication while there and found myself barely able to concentrate on the concert as I was trying to invent a headrest of some sort in my mind to make the seating more comfortable. Subsequently I ended up with a painful back spasm for two weeks after the event.
I think that venues seem able to cope better if you are in a wheel chair because obviously you have your own seat but if you have more general symptoms of discomfort its harder for them to cater for you.
When I returned from Brighton I decided to do some research to see if I could find something that would help as the alternative is to never go to the theatre again.
I found on the internet this product called a 'first class sleeper' which was invented by a pilot for comfort while flying. It comes in a small bag and is easy to inflate and deflate. It gives support to your back and up as far as your head and neck.
I have used it most recently at a local fibromyalgia meeting!
At the theatre I guess you would have to ask for a seat in the back row so as not to annoy anyone behind you. I also think I would take it travelling as it will easily fit into hand luggage.
I have always carried around a cushion to sit on- it is a tempur cushion that I have made a bag for so it just looks like I am carrying a bag and then I just sit on it!
The Ist Class sleeper is available either on ebay or from
this supplier.
It cost me $54 including postage. (£28)
Linda F
- Bath Spa
We have a bath spa that we bought from Tesco's when it was on offer, but the normal cost is around £50.00 (Woolworths also do them for around £50.00).
I try to use it for 15 minutes each morning just after I get up and have found it to be beneficial in loosening up my muscles. It may only give relief for an hour or two, but as you know every little bit of relief helps. The mat fixes to the bottom of the bath using suction pads. A pipe runs from the air unit into the mat and you can have it on three different speeds. I normally use it on high for 5 minutes and then reduce to medium or low for the rest of the time.
Elaine
- Home Assessment
Did you know that you can call your local social services office and ask for a home assessment? If you feel you are struggling with things at home and that you may need adaptations or equipment to make life that bit easier, you can refer yourself to the Social Services. You don’t need to go through your GP or anyone else. Just give them a call and ask. Please bear in mind that you may have to wait as demand is probably high. Also if you do follow up on this, please feed back your experience to us.
- Enjoying The Holidays - by Carol Burchhardt RN Ph D
Have a positive attitude about the coming holidays. Know that they have much more potential to give you energy and strength if you remember why you are celebrating.
Adjust to changing circumstances. Don’t expect everything to be the same as it always was. Maybe your 20-something kids don’t need stocking stuffers any more. Maybe sending the family off to serve Christmas dinner at the local homeless shelter would make everyone appreciate the true meaning of the holidays more. (Besides, then you can take a nap.)
Plan ahead. Suggest to the relatives that they entertain this year. Plan your rebuttal when they refuse. Don’t use your fibromyalgia for an excuse. There are lots of valid reasons why its OK for things to change. Appeal to their sense of fairness.
Prepare simple meals, simple gifts, simple get-togethers. Remember that you are not the only one who needs a nap during the holidays.
Yield some of that need to control to anyone who is willing to take it. Then sit back and let them do things their way. Take deep breaths and repeat as many times as necessary, “I don’t need to control everything.” “They are competent people.” “The tree will look fine without ornaments.”
Honour the part of yourself that knows what is best for you.
Omit all those little traditions and rituals that, if you really think about them, have become meaningless. Maybe you are bored with watching the hundredth replaying of The Nutcracker or getting up at 5 a.m. to put presents under the tree.
Listen to beautiful music. Take time to take care of your soul.
Imagine how it would feel to enjoy the holidays. Let your mind form images of what you want the holidays to be.
Dare to believe that those around you really do care about how you feel and want what is best for you. But know that you may have to tell them. They don’t read minds.
Allow time to do things at your pace or not do things at all. Decide what is important to you. Make sure you include your regular exercise routines in your plans.
You deserve to enjoy these holidays. Whether you do enjoy them is in large measure up to you.
- Things that help me - by Janet Hearn
Egg-box foam on my mattress. A cheap solution. Plus an old duvet on top. Bliss, like sleeping on a cloud;
An Electric blanket. Heat it up and go to bed to comfort the stiffness and pain;
Tie an old foam pillow with tape to a butterfly shape for painful necks;
A hot bath with four drops of Lavender, and three camomile essential oils. Swish about well, and soak for 15 minutes. For pain, stiffness and tiredness;
Hot Wheat bags for localised pain;
For congestion; inhale over salted very hot water, two drops of lavender and two Eucalyptus Essential Oils. For two minutes only three times a day, especially before sleep, clears the head a treat, with no side effects;
Tissue Salts for Fibrositis, taken as soon as muscle pain starts;
Malic Relief supplement for muscle pain, taken daily, seems to have reduced levels of pain and “fogginess”;
Owning a rather crazy dog, who keeps me laughing and makes me go outside for walks
Keep a supply of funny videos, or feel-good movies to lift your spirits on those days when all you can do is curl up on the settee and wait for it to go away.
- Tips from Maggie Packham
Hi! As a sufferer of Fibromyalgia I was so pleased when the support group was formed in Worthing, and which I have found a great help. I would like to share a few things that have helped to make some of the symptoms less severe.
I take a ginger capsule everyday which is a natural anti inflammatory and helps with the aching;
I now use a Tempur pillow, which is not cheap at £70-00 plus, but it has definitely helped relieve the pressure on the neck, and also the pins and needles in the hands. I don’t get as much numbness now;
Like a lot of sufferers, I was getting a lot of visual disturbances and after consulting my GP, I now take 75mg of aspirin every morning with my breakfast and have had no attacks for several months. Please consult your own G.P. before trying this;
Keep thinking positive. As I am sure the medical professionals will find a cure one day.
- Things I have tried & found to help my FMS - by Lyn Tate
The extensive research I've done, has shown Acupuncture and Myofascial release (specialist massage) to be best for Myofascial pain. I'm now trying Acupuncture for this, as Myofascial release is not easily available here in the UK.
ACUPUNTURE
Helps with pain, dizziness, energy levels, stomach, my flares are shorter and less severe & my periods are down to HALF what they were, after only 3 sessions, and my once violent pre-menstrual headache is now a low grade one, and I always sleep like a baby and wake refreshed after each session. Be prepared for it to hurt, and cause a lot of weird symptoms, as it is unblocking your system, and can activate old symptoms as it does this, but I personally have found this VERY effective.
CHIROPRACTIC
Is WONDERFUL!!!, it really WORKS for pain, they have to have more training than any of the other PTs etc. apparently over 7 years. There will be a central register of licensed ones in the U.S., (there is in the UK) and try to get a recommended one if possible.
The 2 women I have had were good. My last one Ali, was wonderful, but she couldn't understand why the adjustments she made kept springing back, said she thought I had other problems and my system was very toxic. She told me to get tested for Candida - turned out my problem was Leaky Gut, (Live Blood Analysis, with a Nutritional Therapist) which has similar effect on the body, and can be tackled in several ways. I'm going with Chinese Herbs as they work WITH the Acupuncture.
Now I know about the Myofascial problems it makes a lot more sense, that being out of wack will make my skeleton spring back. If you go, expect to go often to begin with, (1st few weeks) but then use as a pain killer, that's what I do. I can go in agony with head aches and nerve pain, and come out pain free!!! I'm just sorry Ali left to go travelling, and I've now got a Guy, who insists he knows better and can cure me, tries to get me to go weekly, so I'm trying to find a different one, but even he gets rid of the pain, and I can be pain free for weeks.
The other things I find that help me are..............
AROMATHERAPY
Lavender (with or without camomile) aromatherapy oil, on my pillow and pulse points help me to sleep (I always sleep now)
(also has antibiotic, antiseptic, and antiviral properties, so a few drops on lymph nodes, and soak in a hot bath, gets it straight into your system where it is needed to boost your immune system)
Clove oil (10 drops) in the bath eases aches (don't make the mistake I made and try and put it on skin direct, hurts like hell) (also mix with 10 drops black pepper oil makes it even better)
Black Pepper oil (10 drops) also in the bath, boosts the clove oil, and is VERY warming
Clary sage oil (5 or so drops in an aromatherapy burner lifts depression and gives you the giggles - its a euphoric (but only a few days at a time, or you become immune to it). Wash your burner thoroughly, have a few days off and use again - its a very potent oil
Jasmine oil is also for depression, but not as potent, and is great for calming nerves. (Burner)
Frankincense is great for use with meditation, Reiki and Yogic breathing, helps focus your mind, and is a very spiritual oil. (Burner)
Rosemary is good for headaches and tiredness, it's even recommended for jet lag (use on a tissue or burner)
SUPPLEMENTS
Flax seed oil
is better than Cod liver Oil and I take 1000mg daily - really helps with joints and aches.
Ginkgo Bilboa
for "the fog" (really helps when I can remember to take it) I have a very healthy diet & should have plenty of Vitamins & Minerals in my food. But I have absorption problems because of Leaky Gut, or Candida, or IBS etc (lot of theories out there??) - so find supplements can work better.
Zinc & Magnesium
deficiency (I have read) can have similar symptoms to, or can aggravate FMS - I showed to be deficient, and find taking these helps a lot too.
Malic Acid
I have read and heard excellent things about this, (combats fatigue), but having difficulty finding it in the U.K.
Cats Claw
Since taking this I have found my once bad IBS has all but gone, is also reckoned to boost the immune system, and has anti Cancer properties.
Fever-Few
In the past I have had excellent result with this, taken daily as a preventative - it all but stopped my once severe monthly Migraines. (2 other people I know, had the same result)
Complete B complex
Contains RDA, of all B vitamins - this helps with all kinds of FMS related symptoms.
Cherry Juice Supplement
Tastes TOO nice, especially with sparkling water, and at £9.99 a bottle is quite expensive, but I have found that this genuinely does help to dampen down pain, I have even played around with the time of day I take it, to make sure I wasn?t imagining it ( I am no longer using this, because of expense, I found it only quite good)
JUICING & NUTRITIONAL THERAPY
Carrot juice boosts your immune system and helps tiredness (best overall juice for chronic fatigue, allergies)
Beetroot cleanses liver & blood
South African Red Bush tea helps detoxify system - boost immune and calm nerves
Lettuce before bed helps you to sleep (this can be juice or eaten) - is good for headaches
Bananas help with cramps (potassium) and insomnia
Pecan nuts best natural source of Pyroxidine (10-15 whole daily) - helps with all central nervous system problems and aids sleep
Raw spinach as juice, for headaches, helps purify & oxygenate blood, so brain gets more oxygen
For Rheumatism (caused by build up of Uric acid in muscles), carrot, beet and cucumber juice (equal mix) (my book recommends 2 pints daily)
OTHER THINGS
Reiki
A form of energy healing, that works on the "Charkas" I have been attuned, you need to be to self heal, but anyone can use this to reduce stress, Diane Steins Essential Reiki, is a great book if you are interested in this, helps me focus my mind, & so helps with pain, and keeps me calm
Yogic breathing
Helps calm me, especially if I get the noise attack (volume button turned up) and I'm out and about, stops it taking over
Meditation
Also helps sleep, (and mediative music and keeps you calm)
Tiger Balm
A natural muscle rub I found in the chemist, or ethnic store, its very warming and soothing on aching muscles, and can even help nerve pain
Cannabis
Use in moderation as bad for the Adrenal Glands (possible FMS cause) and can cause Psychological problems in some people, but I do find this can help with pain, even nerve pain and knocks me out for the whole night, I'm lucky & usually sleep, but it?s the only time I wake feeling as if I have slept (but still illegal in most places), I use this very rarely, and only in VERY bad times
Massage
Really helps loosen tight muscles, I also have a mechanical 'pro Shiatsu' massage gadget, not as good as the real thing, but not too bad, definitely helps
Pain-gone pain pen
A small gadget that fits in your hand bag, seems to work on a similar principle to a Tens machine, crossed with acupuncture, totally natural pain relief, and I find it really works, though would recommend trying to find somewhere you can test it before committing yourself, as quite expensive (£50), (available on the internet & possibly in larger Chemists/Drug Stores (Boots in the UK))
Heat Pad
Pad to heat in a microwave, very soothing, for aches and pains and I find adding a few drops of Aromatherapy Oil to it, even nicer
Eating a 'Clean' chemical free diet
low in dairy, wheat, sugar, and no meat (don't like it, and it's hard for me to digest), I'm no saint, but try to live by the 95% rule, so allow myself treats, though sometimes I do slip, and eat too much of what I shouldn't, I 'feel' the difference pretty quickly, when I do. I would recommend keeping a food and symptoms diary (available on the net, as print out), as you may have other intolerances that may be specific to you, for example, too many tomatoes, especially cherry, have been found to aggravate my sinus problems (they are a "histamine rich food")
This has been my own personal experience. I am not a medic, nor have I any training in Nutritional Therapy, or other Alternative Therapies (apart from Reiki), but I have had a strong interest in this kind of thing for very many years, and it has 'cured' previously 'incurable' Kidney problems.
I hope that by sharing some of this, it can be of help to some of you too...
NB: Please remember to check with your GP before trying anything suggested by members or otherwise.
Buy-at the FMS SAS on-line shop.