Comments on: Your Rheumatoid Arthritis Onset Stories, page 3

By: Maggie

Maggie — Sun, 29 Apr 2012 15:55:25 +0000

Shanna, your story is so similar to my daughter. After the birth of her first (and last!) child, conceived after 3 rounds of IVF, she started with aching shoulders/upper arms. We put this down to lifting a baby plus his car set around plus they had just moved house so she had lifted stuff too. However, one morning she just could not get out of bed and this was about 6 weeks after the birth. I have read on many websites, stories from new mothers who all started with RA after childbirth.
I spent most of my free time, when not helping with this new baby, Googling RA and found Leaky Gut and food elimination amongst other things. Tess did go to a nutritionist and it was her treatment with probiotics and food elimination that gave Tess almost immediate relief She did suffer what is called a Herxheimer Reaction at first but once that was over she was as good as new. Tess continued to eliminate many foods as she felt good but she lost a lot of weight and went down to under 7 st and size 6 (English size) and because of this had to go back to her normal diet, at least for a while.. The pain came back. In December 2010 she was offered Humira as she was found to have joint damage. She had been on Sulfasalazine when she returned to work and also offered MTX which she tried three times but this gave no relief and she didn’t like it anyway. It was then she went to the nutritionist.
Once Tess was on Humira, having gained weight, she started back on the food elimination diet. It was obviously difficult to tell whether it was the Humira or the diet and I did ask her to delay the injection for a week or so to see what happened. She didn’t do that until the October 2011 when she forgot. She has not injected since that time and has been really well. She found, even on Humira, that if she ate tomatoes inadvertently, she would get pain. She now believes that dairy foods and tomatoes are the biggest problems to her.
I do wonder whether the extra consumption of milk whilst breastfeeding pushed her over the edge as it were! She was never a milk drinker and still isn’t but to increase breast milk was drinking chocolate flavoured milk. It makes one wonder. Leaky gut is not uncommon as Candida can be worse when pregnant and food particles can leak into your blood stream. Your body then sees this as an enemy and this causes the inflammation. We can all suddenly acquire food intolerances. There are many books on food and RA. English rheumy has written a book on diet and RA – Dr Gail Darlington. There are many others including one called Conquering Arthritis written by Barbara Allen who also has a website.
Acidic foods are to be avoided by Tess as far as possible and she keeps an eye on her PH levels – you can get testing strips online.

By: kelly

kelly — Mon, 10 Oct 2011 14:15:57 +0000

Ok Kelly – I just had a good cry – so many stories- I can relate to them all. Will get mine to you. thanks for putting together this avenue for all of us to share- it truly helps.

By: barbara

barbara — Mon, 14 Feb 2011 16:14:34 +0000

Thank you all for your stories. Francesca’s story really hit home with me when she spoke about how difficult it is to deal with all the advice given by non-rheumatologists. I, too, have been told that I am a tool of the pharmaceutical companies, or that all I need to do is go on a water-only 14 day fast, or that if I just learn to be happy and have a better attitude everything would change! I am grateful for my sense of humor, as it has enabled me to brush most comments off, but I still get frustrated. When I was first diagnosed, my rheumatologist warned me that I am going to hear a lot of advice from people who really have no understanding of the disease. That also really helped prepare me for the onslaught. I am deeply grateful for RA Warrior and all the people who have contributed. Thank you.

By: Kelly Young

Kelly Young — Thu, 04 Nov 2010 15:07:55 +0000

Shawna, It’s so good to hear your treatment is working so well. I’m so glad for you, too with those babies. :heart:

By: Shawna

Shawna — Thu, 04 Nov 2010 14:39:41 +0000

Shanna, your story is so close to mine. I have a 4 year old and 3 months after giving birth to my second child I had my onset. Mine started in my hands, moved to my arms, shoulders, knees, feet, toes, I had it everywhere. But after seeing my rheumatologist I was put on metho and predinsone I have been almost in full remission. But people did not realize how hard it was to care for my baby when it was active, I could not open baby food jars, button his clothes, sometimes barely pick him up. Thank you for posting, I so relate to your story. My baby is now 7 months old and I enjoy getting in the floor and playing with him and getting to be a active mommy with him and my 4 year old. I hope you stay responding well to your treatment, God Bless

By: CeeCee

CeeCee — Thu, 30 Sep 2010 02:05:23 +0000

I love this site I finally found people that I can relate to . When I tell my friends about my RA stage IV they really dont want to hear what you have to say. My RA is terminal so I just take my pain killers which they dont even work for me because I have it in both hips, both hands.both knees ,back and my neck and jaw.Seems to me that there is no one in the Bay Area that I can talk to so Im sure glad that I found this one. Does anyone know of any support groups that is near the Oakland,Ca area? Iam at the last sage of the RA and how lond they say I may have they cant tell me they just said Im terminal . I get discouraged a lot because I can get to the bathroom or I just cant walk so I have to take my wheel chair with me where ever I go because I dont know when I will have a flair up and be on the ground and cant get up. One day I was going up my driveway and both of my legs just gave out and I was on the ground and I tried to hold up on the fence thinking it wasnt that serious and there I went back on the ground it was like I was paralized so I just take my wheelchair with me where ever I go. I hope that everyone feels a bit better I know its hard because others dont understand until they go through our pain. May God give us the strength to keep on going. God Bless

By: Melissa Parham

Melissa Parham — Fri, 19 Mar 2010 04:01:53 +0000

Thank you ladies for taking the time to share your story.

By: Kelly Young

Kelly Young — Sat, 27 Feb 2010 01:47:34 +0000

Thanks, Bianca. We do have several Ankylosing Spondylitis readers. Let us know how it goes in DC.

By: Bianca Cox

Bianca Cox — Fri, 26 Feb 2010 20:53:18 +0000

Hello, my name is Bianca Cox and I have Psoriatic Arhtritis and Spondalyathrapthy. I have read everyone’s story and I am glad that people are speaking up about thier experiences. I also want people to know that they do not have to suffer. There are so many medications out today that help. Looking back I believe that I began to have symptoms with I was in elementary school. My back always had knots in it and I would beg people to massage my back. I also always needed more sleep than most. My symptoms did not come full circle and until after I had given birth to my second and last child. I was 3 months post partum and I woke up one day and felt stiff all over. I am a nurse so I inspected all of my joints and they did not appear to be swollen. I went to a primary care physcian and he ran lots of tests and then told me I had fibromyalgia but that there was nothing that could be done for it. That was 11 years ago. Anyway,It hurt so much to just move, much less take care of my two kids. I became almost comempletely dibilated and we had to hire a Nanny full time to help me with my kids. After a few years I did begin seeing a Dr. who specialized in Fibro and he put me on afew meds that helped somewhat but I continued to get worse. I have two sisers who both have arthritis and so I went to see a Rheumatologist – nothing showed up on my lab work and everytime I made mention about my sisters he acted like I had not even mentioned it. He did put me on a trial dosage of Prednisone and I immediately got some relief but he said I could not stay on it. I gave him a year of my life and then he finanally told me that I needed to go see a Pys.DR. My Fibro Dr. told me he was convinced I had a form of arthritis and told me to go get a second opinion. I did and I saw this new Dr. and she examined me and within 20 min. told me that I had Psoriatic arhtirits. I cried because I could not believe I had suffered by that time 7 years with this disease not knowing that I had it. It has taken a total of 3 years to get me to the point where I feel half way normal again. I take Rhemicade infusions every 5 weeks and I am on a long list of other meds but it has changed my life for the better. I am now able to take care of my kids without help. I do have someone who comes and helps me clean my house every two weeks. It is true that my life will neveer be the same as before. I still have to pace myself and I still have days when I hurt but I have more days when I feel ok then not. It is difficult because when I really sit down and think about this the fact is that everyday for the rest of my life I am going to wake up in pain and everyday I will have to get up 1 hr before my family does and take pain medication to help take that pain away so that I can be the mom that my kids need me to be. But I am thankful that there are medications out there that I can take. It has taken me a long time to complete the 7 stages of grief, but I have finanally come to accept the fact that I have a chronic illness and that it is not going to go away. I would like to encourage everyone to keep on keepin on. I will be going to Washington DC to help advocate for us.

Bianca Cox