Hi,

I am so sorry you have been diagnosed with this! Glad you have found this group where you will find support and have a place to vent with people who totally understand what you are going through.

The positive so far - that you were diagnosed early! That means you have at least one doctor who has seen this before, which is actually uncommon.

As others have said having a team of knowledgeable doctors is really important for getting this into remission and getting the pain under control quickly so that you can keep your limb moving.

One of the best things you can do right now as you assemble your team is to write down each and every symptom be as detailed as possible as to the type of pain. Also, draw out a diagram of where the pain is and if it is different in one area versus another write that out. If your limbs are different colors or you have a rash, swelling etc., take pictures of your limbs to show your doctors. Take this information to each and every appointment. Don't assume that any new doctors seeing you, even if you were referred have all the information or took the time to read your chart fully. Having it all in writing (add to it as time goes on or new symptoms appear) for each appointment will help make the best of your appointments and treatment going forward. Do the same with medications, noting any side effects etc.,

Do your best to keep your limb moving even if it is just isometric movements. If you can't move your knee start with your feet - ankle pumps, circles, draw letters with your toes whatever you can do to get the blood moving. Work your upper body with simple movements and even weights.. it's important.

Desensitization using your own hands to touch and or massage the area is very beneficial if you have sensitivity issues. Start with you own hands and then work up to using different textures and then later ask your spouse to help. Mirror therapy is also very helpful and like with desensitization if started early and done many times throughout the day every day can really make a huge difference.

Because this disease brings on different types of pain keep in mind that medications often only treat 1 or 2 symptoms and not all of them. For instance Nuerontin type medications (Gaba, Lyrica and Cymbalta) mainly treat the burning pain. Lidocaine, Votaren and other compound creams help with sensitivity. This is why I mentioned making a detailed list - it will really help in this area while trying to find the right medications.

Epsom salt soaks - I use 2 cups of epsom salt in a warm bath and soak for 20 min. this helps with inflammation and is also calming.

I hope this is helpful for you or someone else reading,
Tessa