Asked by Tanorexic2010 6 years ago
I was diagnosed with Mixed Connective Tissue Disease when I was 18. Apart from making me tired a lot of the time the Lupus hasn't become too serious (touch wood). But the arthritis is really starting to get me down, my ankles and wrists are severely swollen and it's getting harder and harder to do simple tasks like walk distances, unscrew lids, even make a fist with my hand. Just wondering if anyone has any experience with this disease and if they've found anything particuarly useful in fighting it and its effects?
Thanks for answering - your answer appears below
rosered 5 years ago
Hi. I am very sorry to hear that you are suffering from a number of autoimmune conditions. I am in the same position as you; I was first diagnosed when I was 11months old and now have approx. 5 autoimmune conditions at age 25. I work for the charity Arthritis Care and I also run pain management classes within the NHS. If you wish to speak to me personally my email is email@example.com
Now to answer your question: Firstly can I just say that I do not wish to offend any of the other kind people who have responded to you. Different things work for different people. This is just my experience summed up in a few bullet points.
1. If you have an active disease you must suppress your immune system. You do not want to boost your immune system as it is an active immune system that will cause you damage and pain. The only way to do this is to take the medication prescribed to you by your rheumatologist: Anti-TNF therapy, and/or Chemotherapy. It’s nasty I know but it is important. Avoid anything that claims it will boost your immune system.
2. If you have swollen joints (or swollen organs because of your Lupus) then you need to rest. Swelling destroys your joints and if it happens too much you will need joint replacements. Not trying to scare you just telling it how it is. If rest and ice packs don’t work within 48hrs you need to speak to your rheumatologist again. S/he may need to do a small day procedure where they clean the inside of the joint, remove fluid and insert steroid crystals into your joint. Screaming and swearing during this procedure is allowed.
3. Physiotherapy. Everyday. If you don’t move your joints they will stop working. Hydrotherapy if you can get it.
4. Whilst there is no real evidence of the effect of diet there are some things to take into consideration. To start with you will probably be anaemic because of the medication, this is not a lack of iron it is disease anaemia. However, if you have a lack of iron in addition to this you will feel exhausted so eat lots of green leafy veggies. Some people can’t eat fish or strong flavours when on chemo. Many people find that they naturally avoid very acidic fruits such as lemons, pineapples, oranges etc. I personally find my health problematic enough without trying to restrict what I eat so I eat what I feel like eating because I trust my body to tell me what it needs.
5. Relaxation/meditation/mindfulness. We all should do it, healthy or not. Stress=pain.
6. Sleep. Too much or too little is bad. You will have more pain in the mornings and at the end of the day. This is because you don’t move enough at night and you move too much during the day. Be gentle with yourself.
7. Mood. I’m sorry, but you will feel tired, in pain, sick, stiff, hot, cold, angry, scared and depressed. Seek help if you need it.
Now that I have terrified you let me just add one thing. I was given a wheelchair when I was 7yrs old and told that I would be unable to walk before I turned 10. That chair has never left my parents' garage. My disease is so severe that I have never been in remission and have severe deformity to my feet, knees, hips, spine, elbows, wrists, hands, and jaw. It also affects my lungs, liver, skin and eyes. I take only one major drug a week and I rarely take pain killers. I work, I socialise, and I travel. More importantly than all that I am happy. Not all the time of course but mostly. If you saw me you would not believe I was ill. Have hope, attend a pain management course + get a good rheumatologist. Please email me if I can help.
BeHealthier 5 years ago
I find taking lost of Fish oil can really help - make sure you get a good quality one that does not smell fishy or give you the burps.. I use Herbalife's Herbalifeline and it has helped ease my hip joint pain. It will also be good for the Lupus.
A friend who is on a lot of medication for her RA swears by Aloe Vera drinks, I think this helps calm the less welcome side effects of the medicine.
yourlocalpersonaltrainer 5 years ago
Sorry to hear that. As far as I know the treatment can be medication, reducing the stress in the joint or surgery.
melanieflower 5 years ago
I have helped clients with RA using both nutritional therapy and kinesiology. As BeHealthier says, fish oils are good, along with other anti-inflammtory nutrients. There are lots of nutrients that help the immune system and calm inflammation.
Kinesiology works in a different way, similar to acupuncture. It helps to remove blockages from the body's energy meridians so that the body can heal itself.
lindadb 5 years ago
Really sorry to hear that you have such discomfort. I am a Kinesiologist and have had great success with helping clients with Rheumatoid Arthritis - in particular a lady who also had a Bakers Cyst. Have a look at my testimonials on my website. This particular client needed supplements of vitamin D and Omega 3, but you may need something different. Having said that, generally the supplements would do you no harm anyway provided they are of good quality and that you take the right doseage (which will probably not be the amount on the packet..!) Also there was a big connection with her jaw and when I worked on that she was able to get more movement in her other limbs and joints.
If you are in the UK you can find a Kinesiologist at http://www.systematic-kinesiology.co.uk
DudleyKentMBAcC 5 years ago
I see patients with similar problems in my clinic. I often prescribe herbs but tend to use acupuncture and soft tissue work more. You might find it of benefit but I would say that you would need to do it fairly frequently to start off with. I'm not a nutritionist but often recommend that my patients see one at least to formulate some kind of dietary plan.
Check out the link below it shows some of the research on arthritis and Chinese medicine.
LynneGordon 5 years ago
My arthritis had gotten so bad at one time, I thought I would have to give up my home and move into a senior center and then I found The Oxygen Therapy Program. You can get more information about it here: http://www.oxygentherapyprogram.com/arthritis.html I'm sure all the suggestions about changing your diet are helpful, but I wasn't interested in changing my diet. Hell, I'm old and eating whatever I want is one of the few pleasures I have left. God Bless.
HolisticFamilyHealth 5 years ago
Hi there -
Good advice below from MWA health - you are what you eat and what you absorb, more importantly.
I have several clients with this condition - one of whom was in a wheel chair with RA when I met her 18months ago and who is now walking.
I work with a system of compouter bio-resonance at the informational and energetic level - my website explains a little more.
There is hope and a lot you can do; contact me if you feel inclined - I am sure I can help..
ctheocha 5 years ago
My advice is to seek help from a practitioner of Chinese Medicine who can combine acupuncture and Chinese herbal medicine...
healthandharmony 5 years ago
Having Rheumatoid Arthritis at such a young age can be debilitating.
At Health and Harmony we have seen many patients with arthritis.
Advice is very important and being able to manage and understand your
We are very happy to help you.