Hi LACIEAUDI1,
Starting in my late teens up and escalating in my late 20's - early 30's, I have had something that my doctor finally classified as 'CF related arthritis'. Your condition could of course be something completely unrelated, but perhaps my experience gives you something to work with as I do believe mine was related to Cystic Fibrosis and not just a random coincidence. Background: I don't have rheumatoid or other arthritis markers, however every few months I would have a week long flare-up that sounds very similar to yours and I had a two year period where I only had a few days per month where I felt normal. The only real thing ever found in my blood results were a raised CRP level while the flare-ups were happening. Our stories do have something else in common: I was also off enzymes for about 4 years in my early 20's (back on them since then), and my fat soluble vitamins were all low. You did not mention bone density, but mine was in the lower range at the same time all of this started, however now back to normal.
Symptoms I had:
- Sudden onset pain in any and eventually all my joints, large and small. The pain was very sharp with movement to the point that I couldn't lift my arm above my head, place weight on my foot or turn my neck if that joint was inflamed on the day. It was also usually "traveling", so the pain would go through my body over a few days and attack almost all my joints but it would happen assymetrically, meaning eventually both my wrists and knees would hurt but not on the same day. The assymetry was something the doctors took note of. After about 5-7 days it cleared up completely.
- Swelling, ranging from a puffy feeling to actual pronounced swelling looking like a sprained injury.
- A skin breakout that looks like mosquito bites (with a little spot in the center), or sometimes bigger, the size of a coin, raised, red and always tender to touch, sometimes throbbing. They mostly appeared on my lower legs. Once, some of the large spots started looking a bit infected and I was prescribed an antibiotic.
- Low grade fever, feeling unwell and loss of appetite for the first two days at least
- Sore throat especially at the onset
- Sometimes it would strike for no reason, but often it happened after I "over-exerted" myself in some way, e.g. studying long hours, or getting stuck outside while it was raining and I was cold. I couldn't find any other link to triggers.
Treatments I've had some benefit from:
- While having an acute flare-up: Ibuprofen 8 hourly teamed with Paracetamol 4 hourly (I continued the use of 1x daily ibuprofen for several years as a way to try keep the inflammation under control and I feel I benefited from this)
- Prednisone (corticosteroid) tablets: When it was very bad, a 5 day course of this helped and the relief started after only a few hours of the first dose. However, this was not something I could use long term due to the many side effects (raised sugar levels, diabetes), and it didn't reduce the number of overall flare-ups so I kept it for severe cases only.
- Hot baths up to 3 times a day. For me heat helped, not the cold.
- I was desperate so I started trying different supplements, and I was surprised that my flare-ups reduced about 10 days after I started drinking a vegetable based "Green juices" powdered supplement: a concentrated, powdered type of greens containing barleylife, carrots, beetroot which provide a lot of vitamins but is especially rich in Vit ADEK. I do not know scientifically why this would work other than that my body must have been deficient, or it strengthened my body's ability to recover from the fatigue that started the flare-up. I don't know. But I believe it worked and still take these a few times per month, and I'm convinced it has greatly reduced the intensity and frequency of the flare ups to the point that I get them very seldom nowadays. I even included it in a blog recently as my top remedy:
Top remedies or tools for CF related ailments
I'm not part of their networking thing, but I mostly use the AIM brand Just Carrots, RediBeets, and BarleyLife Extra because I like the taste the most and it is easy for me to get but I have used other products from my health store (one is an all-in-one product, not split into different veggies) and I think they will all work as long as it has similar ingredients.
- Lecithin: I am not as convinced that this has helped the arthritis but I have been taking this extra supplement for years, so just mentioning it.
- Started getting my vitamin levels checked regularly, and taking my CF Vitamins and calcium as prescribed to get my levels to a normal range.
My flare-ups are really much better now and sometime just manifests as some stiffness or milder body achiness rather than the intense sore joints and everything that went with that.
I wish you luck, and hope you get some relief soon. Of all these things, I'd suggest trying the green and veggie powders and to get your Vit levels into normal ranges.
