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Keeping RA Feet happy

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My RA feet are much happier today.  They had not been happy for several years.  RA had started in my feet and included my ankles.  Pain and unstable gait were serious problems.

I was sent to a podiatrist. He ordered weight bearing x-rays of my feet which showed deteriorating joints.

He sent me for the following inserts that are available at New Balance stores. About $50 a pair.

ProThotics, Motion Control performance insoles

  • Support and stability for overall foot health and comfort
  • Anti-friction fabric, breathable, anti-microbial
  • Vy-Gel shock absorption across the forefoot and heel strike to protect against fasciitis
  • Strong arch and metatarsal features help to relieve pain and guard against harmful over- pronation
  • Structural stabilizer promotes maximum stability and helps correct postural alignment
  • Polyurethane base layer provides cushioning that will never flatten out over time
  • Bio-mechanical design helps prevent pronation and rolling ankles on uneven terrain.

They live up to their promise. I have two pairs. Yes, they are expensive but have made an incredible difference for me.

My podiatrist also sent me for new shoes.  I was fitted for excellent shoes I am an E width.  I had been wearing a B.  The importance of being fitted for shoes by an expert can never be underestimated. I had thought I was buying decent shoes. Wrong! I bought two pairs: one called a nurses shoe(black) and one an excellent walking sports shoe.  The New Balance store has an excellent reputation. Mr. Comfort is another shoe brand that is excellent for RA feet.

Between the inserts plus the well fitted, supported shoes, my feet are much happier for getting around. This help was non-invasive. It didn’t include more medication. It was expensive. But it made the world of difference for me.

Exploring and moving

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Do you really want to spend any time walking on a treadmill or  riding a stationary bike?  Indoors?

Sure, it’s great if you live in Watertown, NY and you get socked in with snow. It’s also good if you live in a bad neighborhood.  But if you live in Albuquerque( ABQ to us), there is more to be had.

 Walking with your camera in the great open spaces.

I am a professional photographer. I have all the big expensive cameras with the impressive lens. I also have a seriously progressing Rheumatoid Arthritis. I have been lying low with pain and inflammation. Finally, I am ready to move again.  Baby steps.  Out walking trying to get my legs again, I take an old digital Canon. Fast. Satisfying. Easy.

I would never have seen these Sand hill Cranes when walking on a treadmill. I love these guys. Makes my heart happy to see these 4 foot visitors from the North. One of the oldest surviving birds, they mate for life and care for their young for a year.

Why can I walk?  I have damaged feet!  Well, lucky me for having George Ochs as a podiatrist. He fitted me with a brace for my left foot and ankle and sent me for orthopedic shoes. My feet are much happier. Don’t know how long it will last, but I am out exploring the open space along the Rio Grande. Good for the body, the soul and the mind. Making happy memories.

 

Finally, a life

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I really thought I was going to die last year.  To prepare, I filled out the final wishes form.  Next, I made an attempt to simplify my financial records. I said thank you to all the people who have been helping me the last few years. I had a garage sale. What the heck, I thought, I would be the one to get the money if I had one before I died.

Just as I thought things were going to get worse, they were already terrible, I started coming out of the methotrexate fog.  I could think clearly again.  O happy days.  At least I had my mind.  Both cancers could return.  My RA could leave me immobilized.  Yet, I would be able to read.  My favorite thing to do.  Preston and Child’s Pendergast series. Baldacci’s adventures. All the fascinating medical books. I could be happy.

The methotrexate injections, Plaquenil, leflunomide and the prednisone finally calmed the ever-present inflammation in my body.  This was after 2 years.  And it may not last long, but it is still a possibility.

With my fancy orthopedic shoes, great inserts. (It is a shame medical insurance doesn’t cover this.), my feet are in half their regular pain.  Expensive, yes, very. But so worth it.

This week I have been doing my conditioning exercises. Today I went for a 20-minute walk in the open space and watched the Canada Geese hanging out on the Rio Grande.

I did not die in 2014.  My story is good for now.  Life is better and I don’t expect to die in 2015.

Such a relief.

The challenge of Feet

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RA tests

My rheumatologist sent me to a podiatrist, a foot doctor.                 Charming man. Once a client of mine.        X-rays were ordered, the podiatrist way.

Standing. Weight bearing. Three views each.  For the third view I climbed steps  and was x-rayed  at foot level.   A  much better test than the standard foot  x-rays.

Results: persistent degenerative changes with in the feet bilaterally.

I admit that this was expected. What happens next?  My doc said surgery is not the answer.  As my feet get worse he feels steroid injections would be helpful.

Now it is important that I wear shoes that fit  well and offer good support.  I should also wear special inserts (Motion Control performance insoles by Prothotics). I got the inserts first.  They are so much better than anything you will find at Target or Walmart. They have support for feet in areas that are thinning in RA.

He suggested our New Balance store or REI.  New Balance was closer. They fitted the inserts and fitted me for shoes that have lots of room for my toes, heel and arch support. I got two pairs, different models. Best to alternate shoes.

Excellent shoes plus extra special support. My feet hurt a lot less.  I do have much happier feet and I believe my RA will progress much more slowly.

Podiatrist+x-rays+shoes well fitted with support and cushioning+extra support with special inserts=MUCH HAPPIER FEET!

 

Rheumatoid arthritis classification criteria 2010

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An international test evaluation for RA.  I scored 7 and I am RF negative.                                                        2010 Rheumatoid Arthritis Classification

THE 2010 ACR-EULAR CLASSIFICATION CRITERIA FOR RHEUMATOID ARTHRITIS

Score
Target population (Who should be tested?): Patients who

  1. have at least 1 joint with definite clinical synovitis (swelling)*
  2. with the synovitis not better explained by another disease†
Classification criteria for RA (score-based algorithm: add score of categories A – D;
a score of ≥6/10 is needed for classification of a patient as having definite RA)‡
A. Joint involvement §
1 large joint¶ 0
2-10 large joints 1
1-3 small joints (with or without involvement of large joints)# 2
4-10 small joints (with or without involvement of large joints) 3
>10 joints (at least 1 small joint)** 5
B. Serology (at least 1 test result is needed for classification)††
Negative RF and negative ACPA 0
Low-positive RF or low-positive ACPA 2
High-positive RF or high-positive ACPA 3
C. Acute-phase reactants (at least 1 test result is needed for classification)‡‡
Normal CRP and normal ESR 0
Abnormal CRP or abnormal ESR 1
D. Duration of symptoms§§
<6 weeks 0
≥6 weeks 1

The criteria are aimed at classification of newly presenting patients. In addition, patients with erosive disease typical of rheumatoid arthritis (RA) with a history compatible with prior fulfillment of the 2010 criteria should be classified as having RA. Patients with longstanding disease, including those whose disease is inactive (with or without treatment) who, based on retrospectively available data, have previously fulfilled the 2010 criteria should be classified as having RA.

† Differential diagnoses vary among patients with different presentations, but may include conditions such as systemic lupus erythematosus, psoriatic arthritis, and gout. If it is unclear about the relevant differential diagnoses to consider, an expert rheumatologist should be consulted.

‡ Although patients with a score of <6/10 are not classifiable as having RA, their status can be reassessed and the criteria might be fulfilled cumulatively over time.

§ Joint involvement refers to any swollen or tender joint on examination, which may be confirmed by imaging evidence of synovitis. Distal interphalangeal joints, first carpometacarpal joints, and first metatarsophalangeal joints are excluded from assessment. Categories of joint distribution are classified according to the location and number of involved joints, with placement into the highest category possible based on the pattern of joint involvement.

¶ “Large joints” refers to shoulders, elbows, hips, knees, and ankles.

# “Small joints” refers to the metacarpophalangeal joints, proximal interphalangeal joints, second through fifth metatarsophalangeal joints, thumb interphalangeal joints, and wrists.

** In this category, at least 1 of the involved joints must be a small joint; the other joints can include any combination of large and additional small joints, as well as other joints not specifically listed elsewhere (e.g., temporomandibular, acromioclavicular, sternoclavicular, etc.).

†† Negative refers to IU values that are less than or equal to the upper limit of normal (ULN) for the laboratory and assay; low-positive refers to IU values that are higher than the ULN but ≤3 times the ULN for the laboratory and assay; high-positive refers to IU values that are >3 times the ULN for the laboratory and assay. Where rheumatoid factor (RF) information is only available as positive or negative, a positive result should be scored as low-positive for RF. ACPA = anti-citrullinated protein antibody.

‡‡ Normal/abnormal is determined by local laboratory standards. CRP = C-reactive protein; ESR = erythrocyte sedimentation rate.

§§ Duration of symptoms refers to patient self-report of the duration of signs or symptoms of synovitis (e.g., pain, swelling, tenderness) of joints that are clinically involved at the time of assessment, regardless of treatment status.

How RA Feels

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RA starts in the feet as often as in the hands.                                                           Mine had started in my feet long before I was given a diagnosis.  My feet came to feel like dense bricks. The whole main part of my feet, all those little joints, were swollen and in pain. The three middle toes on each foot were swollen and would have sporadic shooting pains. I had a hard time walking.

My hands have almost equal billing. Knuckles are enlarged and always have some degree of swelling. I use a simple rubber square jar opener to do the job of opening  jars and bottles.  I keep scissors around the house. They make it so much easier to open many things.

Symmetry is a hallmark symptom of RA.  Left foot and right foot. Middle three toes each side.

Any synovial joint in the body can be affected. My left jaw (mandible) joints  were so inflamed and swollen last week  that I had to be put on a course of Medrol (methylprednisolone).

Sometimes RA starts with one joint. However, it soon will be joined by its mate.

So the RA body has to deal with a great deal of  joint pain. M0anageable with a good rheumatologist and possibly a pain management specialist. Don’t let any healthcare worker tell you to ‘suck it up’ or to meditate through it. Take the pain medicine. RA pain is real. It seriously interferes with quality of life and mobility.  Most patients with RA have extremely high tolerances for pain. By the time they say they are in pain, they  mean it and they really need relief. Pain medicine, like Tramadol,  is simply a tool to help keep you mobile.

There is a fatigue that is unique to RA. It is a feeling that permeates every cell in your RA body. The medical world takes fatigue seriously now. The medical world ignored fatigue until  research demonstrated that it was a debilitating  problem. Fatigue is a complex symptom. The disease process of RA itself can cause it. The cytokines added to the blood stream can cause it.  The body’s pain response can contribute to it. The side effects of treatment medications can cause it.  People who take the TNF inhibitors sometimes find relief. My medical treatment has helped to relieve me of mine.

RA Labs

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 Labs

Labs are tools to help diagnose RA, distinguish it from other forms of arthritis, determine its severity and monitor key body functions for the liver and kidneys during treatment.

Rheumatoid Factor (RF)

Rheumatoid Factor is an autoantibody that is produced by the body’s immune system.  Autoantibodies, made by the B cells, attack a person’s own antibodies. The presence of Rheumatoid Factor  is an indicator of inflammatory and autoimmune activity.

Elevated in about 80% of those diagnosed with RA. Some link the severity of RA with the degree of elevation. The RF may also be elevated in those with Lupus, endocarditis, cancer and a variety of other disorders. My RA is considered sero-negative as my RF factor was not elevated. Read More

RA Progress, Thanks to medical research

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It was 1965 and time to do his urine test to determine  his insulin dose. He was diabetic. He followed procedure carefully.  He went into the bathroom and closed the door. He picked up his urinal and proceeded to fill it. He left the bathroom and handed the urinal to the nurse.  She took it into the bathroom. She dipped her measuring tape into her patient’s urine. She waited as it changed color. She held it up to the chart. A 2+. She went back to the nurses’ station and drew up the units of regular insulin designated for a 2+ test result. She administered the insulin to her patient.  Diabetic management in the 60s.  Blood glucose meters had not been invented yet.

During that same time, there was not a lot of relief for rheumatoid arthritis. Prednisone was new. Methotrexate for RA and all the biologics were a long way into the future. RA  progressed relentlessly until a person was totally crippled and in constant pain. Death would be the only relief.

Rheumatoid arthritis is still not an easy disease. It is relentless on its attack. Pain can be incapacitating. Disability is a common feature.

RA progression can be slowed. Pain can be managed. Life can be good for an RA patient.  We have the scientists diligently at work in their respective labs to thank for this progress. I appreciate them. Hope you do too.

How an RA Book Helped

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When I was diagnosed with RA, I was too sick to understand the long term implications. I was grateful at the time to put a label on the devastating attack on my body.

I love books and have always looked to books for solutions as well as for pleasure. Soon after my diagnosis, I purchased the book, The First Year Rheumatoid Arthritis by M.E.A. McNeil.

With RA there is a major shift in your life. What to do? How to cope? What to think? It is overwhelming. This book set me on the right course. It helped me organize.

The most important thing it did for me was define my attitude toward RA. I developed my medical team. I understood I was the manager.

I started journaling daily and also logging in my symptoms. I researched the drugs I was on and created files for them. I researched lab tests and understood what they meant and kept a log. I asked my doctors questions and received solid answers.

I knew the first few years were critical. I knew medicine was the only answer. I worked with my doctor to find the treatment that would work for my body.

Now I am able to do many things that make me feel better:   a regular massage, body movement, joint flexibility, nutritious food, time with friends.

I learned to slow down. To go with the flow of symptoms.

Thank you, Mrs. McNeil, for so very much.

This book was published in 2005.  Her management of RA was ahead of its time. It is a good read. The medication information is a little dated. I wish for a revised version for that reason.

Have you ever felt stranded?

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Have you ever felt stranded?  Sick …Painfully so…But did not know who to call. Maybe too sick to figure it out.

This happens a lot to those of us with autoimmune disorders. I am seeing many doctors, each a specialist who oversees a section of my body.  For me, I have a rheumatologist, an oncologist, an endocrinologist, an ENT Doc, an internist and a podiatrist. However, there is no one who looks at the total me.

This week I am in trouble. Things just are not working well enough. The protocols that are to be followed when I am in trouble are not working.  What do you do when your painful issue does not fall into the neat little slot of a specialty? When you are plainly worried that all is going to hell?  Who do you call? Unfortunately, not GHOSTBUSTERS.

Here’s what I did. Then I will tell you about my remedy for my next crisis of indecision.

It was decided through C-T scans and visits to my endocrinologist and an ENT Doc that the swollen lymph glands in the back of my head, my neck, my jaw and my face were due to my RA. Relief for me. I was thankful that I did not need to worry about doctors doing weird things to my head. But then what? My oncologist is worried about lymphoma (77x risk in severe RA). A nagging little worry. Just setting the stage here.

A few days ago my left side of my face started swelling. My jaw hurt. My face hurt as well as my ear. My face kept getting more swollen as well as more painful. I felt as if I should call the oncologist right away and demand a test for lymphoma.

However, I called my rheumatologist only to get the message no one was home.

Panic!

Called my rheumatologist again. Thankfully someone answered. The solution was at hand. Thank God!  I did not need to come right in for a lymphoma evaluation. Instead, I was given a prescription for a Medrol pack. I was told that it would solve my problem. I felt much better already. I had a solution, a plan of action.  Seems obvious doesn’t it? It wasn’t at the time.

Strong, lovely and helpful

Strong, lovely and helpful

I needed help. I needed someone who saw the whole me. My next call was to Abby. She is a Palliative Nurse Practitioner. She was able to see me today. She will provide the supportive umbrella for my needs.

“Palliative care is specialized medical care for people with serious illnesses. This type of care is focused on providing patients with relief from the symptoms, pain, and stress of a serious illness—whatever the diagnosis.”

“The goal is to improve quality of life for both the patient and the family. Palliative care is provided by a team of doctors, nurses and other specialists who work with a patient’s other doctors to provide an extra layer of support.”

“Palliative care is appropriate at any age and at any stage in a serious illness, and can be provided together with curative treatment.”(Quote from brochure from Presbyterian Medical Group Palliative Care Centers.)

Abby suggested I take my Tramadol on a regular schedule with my other meds to keep my pain level under control.  She said my GI system was stressed from all my meds and wrote a prescription for probiotics. She also said I still have much processing to work through.

This is perfect for me.  Abby gave me her cell number. I now have a lifeline. I will see her again and I do have her number if I get in a jam. Lucky me. Definitely not alone. I feel much better.

Consider looking for a palliative care service to help you wade through the endless issues of a serious illness. I made the call. You can too.