Fibromyalgia Support Group
You're not alone in your pain. Fibromyalgia is a condition that can be difficult to diagnose and manage. If you're trying to cope with pain throughout your body, sleep problems, general fatigue, or other common fibromyalgia symptoms, you're in the right place. The community is here for you to talk about therapies and share your challenges.
I have a 21 year old daughter with fibromyalgia. She spent most of last year virtually bedridden, had a couple of good weeks around Christmas, and than crashed again. She got flu, infected sinuses and then parotitis. So now she is back to sleeping most of the time, in pain of varying degrees and not eating or drinking properly. We have applied for a service dog to help her and are on the waiting list for the next available suitable dog. Whenever she is in a lot of pain she holds on to the fact that her pup is on the way - even though it may take another 6 months. I am her 'nurse' and really want advice on ways to help her, both physically and emotionally. We have a GP that is understanding, our friends that have stuck by us try to understand and care about how she is, not all of our relatives understand. Some feel she should make more effort, exercise more etc...
I am glad she getting a puppy.
The other thing you may find useful is exploring something called craniosacral therapy. It's a very gentle yet effective sort of energy therapy that over about 8 treatments can help calm the hyperactive nervous state, steadily reduce pain and increase vitality. I know of a number of people who have found great relief with it. I don't know what you have available near you (and I'm in the UK to complicate things even more)
I know there is a specialist clinic here: http://www.thehealthylivingcentre.co.uk/index.php?option=com_content&task=view&id=94&Itemid=125 and even though it's unlikely you can just nip across the pond for 3 months for your daughter to get treatment the web page and practitioners details may help you in some way (you might be able to contact the practitioners for advice) plus also http://www.handsholistic.co.uk/aboutliz.htm
The key is looking out for a 'biodynamic' craniosacral practitioner. It's something 'gentler' in how they work that is generally easier? gentler? more effective?? http://biodynamic-craniosacral.org/
From my own experience with fibro I have to mention vitamin d. I had my blood level of vitamin d checked and it was 'insufficient' (so needing treatment but still ok to self treat) so I did a bit of research and decided to ignore the recommended dose of vit d3 to take and started http://www.natures-own.co.uk/vitamin-d3-90-tablets-50ug-v192/ the food state d3 and it was taking 11 tablets a day (split over 3 doses) that has done the trick! Of the many different pills I take it's this d3 that has had the biggest, quickest response. My exhaustion that felt like a bottomless pit has slowly begun to improve and after about 8 months my blood levels were back to normal. I'm still taking the 11 pills a day, as every time I reduce the dose I have a flare up so I've stopped doing that for now. Only today I've taken an extra 5 pills to try and combat post-viral fatigue that's kind of knocked me off my feet this year. I'm hoping it'll help, time will tell.
The vitamin d3 made such a difference I have to mention it! There's a number of blood tests that should be done for fibro but there's nothing that advises how often they should be done. For such an acute case as your daughter has then possibly every 6 months, maybe even every 3?
Good luck to both of you
Magicpill, there isn't a rheumy nearby that I know of, but I am looking. So far the GP and I are researching and trying stuff as we find it. Grahamstown, South Africa doesn't have much of anything useful:-)
Pumpkin, She has an array of fluffy teddys, dogs etc and she chooses one depending on how she feels. We have also trained our old Scottish Terrier to lie close to her on the bed. The dog adapted to furniture quite easily:-) Not quite the trained service dog, but a useful interim arrangement.
We live in Grahamstown, South Africa. I have never heard of craniosacral therapy before, but I am planning to start researching it as soon as I am done here. Thank you I am also going to find a good source of vitamin D3. I think I will let her sit in the sun if the day warms up a bit later. That may help her until I can get the suppliment tomorrow.
Dr. Roy Breeds - Rheumatologists- Milnerton, Cape Town, Western Cape, South Africa
Qualifications: MBChB (UCT) FCP (SA) Cert Rheumatology (SA)
Practice Number: 018 012 0147761
Suburb: Milnerton, Cape Town, Western Cape, South Africa
Province: Western Cape
Physical Address: Suite 176, Milnerton Medi-Clinic, Racecourse Road, Milnerton, Cape Town, Western Cape, South Africa
Postal Address: PO Box 38673, Pinelands, 7430, South Africa
Phone: +27 (0)21 552 8100
Fax: +27 (0)21 552 8107
Contact Person: Dr. Roy Breeds
GPS Co-Ordinates: 33 51 55.19" S; 18 30 24.82" E
Link to Map: http://www.blaauwberg.net/maps/milnerton/grid4.asp
Email:
Info:
Dr. Roy Breeds - Rheumatologists- Milnerton, Cape Town, Western Cape, South Africa
Dr. Roy Breeds is a specialist rheumatologist consulting from his rooms at Milnerton Medi-Clinic and can be consulted for the treatment of rheumatic and joint diseases such as:
Rheumatoid arthritis
Gout
Ankylosing spondylitis
Psoriatic arthritis
Fibromyalgia
Lupus
Osteoearthritis
Joint pain
Musculoskeletal disorders
Dr. Breeds does not offer e-mail consultations. Please contact his rooms to arrange a consultation at his office.
Check out a thread that I think was called "Describe fibro in a sentence or two". Some good replies there to use on family who don't get that pain can lay you out flat when it's that bad.
My fur-buddy is an amazing comfort and I am glad your daughter's going to enjoy that blessing.
Cheers,
leo
Leo, I read that thread - it gave me some brilliant ideas! I am going to ask around about Fibro for Dummies. I can think of about 20 people who need a copy!
Hope turns around my heart just goes out to her she so young.
https://www.dropbox.com/s/sbsl6juz0jo1wrg/What%20Primary%20Care%20Physicians%20Should%20Know%20About%20Fibromyalgia%202.docx
https://www.dropbox.com/s/ou6dd3x4kuqsczo/What-to-do-while-looking-for-a-good-pain-doctor.pdf
http://www.cranial.org.za/prac_ec.htm
From what I can gather there are 2 craniosacral therapists in Grahamstown! That was weird, looking that up as it appears there's not much available in terms of comp therapies but there are cranio people.
calebsmom, thanks for the message. it really hurts to watch them struggle and know that there is very little else we can do for them.
Pumpkin, Thanks for looking that up for me. When I tried I couldn't find anything. This is a small town, but I think I may have heard about one of the doctors. I will look into it.
My daughter was able to look at this site today for the first time. Her username is Diamondmomo,