Painful rash, joint pain, swelling

LACIEAUDI1

New member
I have had a strange rash and joint pain every 3-6 weeks that lasts about two days for the past 6 years. I have been to derm, rheumatology, infectious disease, psychiatrist, family doctor, and my CF doctor about this issue, all to no avail of a diagnosis. I have have test after test, biopsy, lab work, talk therapy (the thought it was stress induced), tested for lupus, HIV, rheumatoid arthritis with all results coming up negative for any definite answers. Lab work and biopsies showed "general inflammation." Biopsies did not how any specific pathogens. The rash is wide spread over my arms and thighs with a few on my torso, and occasionally one or two on my face. Some of the spots look like a pimple with a head, but when popped nothing comes out, but are very painful to the touch. Others look like a "hive" break out, but the spots are hot and raised. With this rash comes extreme aches and pain. Joint pain in my hips, wrists, shoulders, and knees. Overall sensitivity to touch along with swollen lymph nodes and neck soreness. I also experience cold chills when the rash is jut showing up. Just recently (past 3 times) I have had a couple spots show up on the top of my hands causing them to swell which leads to decreased mobility and extreme wrist pain and weakness. The wrist pain this time persists after the rash and other symptoms have gone (4 days now). Ibuprofen sometimes helps to dull the pain, but it doesn't always work. I have tried icing joins and elevating and that doesn't seem to help either.

I am at a loss of what to do. It is getting to the point where it is almost debilitating and I'm not sure where to go from here. Surely someone else has experienced something like this.

If you have any information or suggestions please let me know!
 

EnergyGal

New member
Hope this helps you

I understand your pain and frustration as I have too had a rash and no doctor would know what to do.

If you can get tested for B12 and other b vitamins- I think that is a good start. If you eat super healthy foods, take a B12 supplement you could be toxic in b12 and there are rashes associated with b vitamins mainly b12.
Are you taking enough Vitamin C. If not, try a buffered vitamin C and take it with all your high b12 foods. To lower B12 in your system potassium and vitamin C is the answer. The best vitamin C supplement that I take is buffered C by Pure Encapsulations.

When I have decreased my vitamin C intake I start to see tiny red marks on my face and this is associated with b12 allergy. My b12 blood level was 1200. When I started to take several grams of vitamin c I got the level down to 800.

You might be allergic to cows milk too. Do you eat lots of dairy? There is a blood test for food allergies. If you are slighted elevated to cows milk, I would go off all dairy and eat dairy alternatives.

So if you answer yes to both of these questions you are on your way to clear away your rash.

I am interested in hearing what you think.
 

EnergyGal

New member
Here is the brand of Vitamin c that works great
https://www.pureformulas.com/buffer...egetable-capsules-by-pure-encapsulations.html

I believe it works great because it has potassium in it. Just my thoughts and what I have observed.

My rash was on my chest and face. I am not sure if we are talking about the same thing but it sounds like you are allergic to something you are eating or maybe your enzymes? If you have taken the same enzyme for many years it could be that. There are many new brands on the market. I do believe what you have is probably coming from your diet.
 

LACIEAUDI1

New member
Thanks for your reply! I checked out the link you posted about the rash. Mine does not look like that. I have my vitamin levels checked every 3 months with only an issue with my Vitamin A and Vitamin D (both deficient). I was off of enzymes for a couple years and recently, about 3 weeks ago, went back on them so I don't believe that is an issue. I have not been checked for allergies, but I have always been one to drink a lot of milk and consume a lot of dairy, but it could be something to look into. Again, thanks for your reply and ideas!
 

stylecomfy

Moderator
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.
 
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carolinen

New member
In cf the body is constantly fighting infection. Your immune responses are working overtime and this can cause reactive arthritis and rashes.Test will be negative, except for raised inflammatory markers such as crp, making it a diagnosis of exclusion. I've had the arthritis but not the rash. The arthritis does seem to flare when I have more infection, and settle as the infection clears, but I get intermittent flares unconnected to obvious infection. Not everyone with CF can take antiinflammatories such as ibuprofen due to reflux and dyspepsia. After some experimenting we hit on a drug called nefepam hydrochloride as the one that for me is effective and without side effects.I also find heat pads help. I would discuss this with your cf doctor again, and ask if it could be a cf related reactive arthritis. All the advice about checking for vitamin deficiencies makes perfect sense, and it's also important to maintain mobility of the joints by gently moving even when they are sore. One more thing, do get your doctor to check that none of the meds you are on could cause the symptoms. I am on interferon gamma, which can cause a lupus like syndrome. it turned out not to be that, but it's important to remember meds as a cause of symptoms. I do hope you get some relief soon.
 

4hats

New member
I also experienced similar symptoms in the past year or so. I had a nasty rash all over my body which was probably due to an allergic reaction I was having to my MAC antibiotics. I would start the meds and shortly thereafter, I would breakout in a very painful rash. In addition to this, I was also having an inflammatory response throughout my body. My joints were killing me. I couldn't close my hands without pain. They were inflamed as were my other joints like my knees and ankles. My lymph nodes were always swollen and I was running fevers constantly. This was happening for 6 weeks at a time and it continued for about a year. I was hospitalized twice. My doctor felt I was having an arthritic response. She thought it was MAC immune reconstitution inflammatory syndrome. The MAC meds were supposed to help, but my body rejected them. I was in tough shape. Then I started using essential oils (cinnamon, cassia and oregano). I rub 1-2 drops of those oils on each of my feet per night and I inhale the residue off of my finger tips for a few minutes, and guess what? No more arthritic response. I've been clear since June 2016, which was when I started using the oils. When I first started using the oils I was in my fever, inflammation, joint swelling stage. In about 3 days I started feeling better. Fever broke, swelling started to go down, etc.....I couldn't believe it. I know many other cfers have used essential oils and they have worked for them as well. I do all my therapies regularly and don't take them for granted. I exercise a few times a week. But I have to tell you, these oils saved me.
 
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