Fibromyalgia similar symptoms.

[mag123ben]

I have fibromyalgia for years, and was born with scoliosis. I found a lot of the symptoms I have were put down to fybro. So nothing more was done. I had infections all year round and for pain and other symptoms were put on all. Acid. Sorry can say the word so can't spell it. Anyway my husband died and I moved in with my daughter. Her Dr. Was annoyed that for 15 years I had been taking acid tablets and 6 pain killers.walking like a zombie. When blood tests came back after a proper look I had MPN JAK2 MPN . Makes me wonder if I have had it for years not just 5 years with my daughter. My. Right leg is swollen and the knee , all the leg is so painful. I have had a bone scan waited a year and now 6 months and still no reply. Have rang but not been seen yet by the hospital. I'm so worried it's going to break as can't walk upstairs. Does anyone else have swollen parts. If that made sense.

[hunter5582]

Sorry to hear about the struggles. It sounds like it is time to get the issues properly addressed.

it is ridiculous that you had a bone scan so long ago and still do not have the results. This should be easily addressed by requesting a hard copy of the results of the report. It is in your medical record unless they somehow lost it (very unlikely).

It is quite common for MPNs to go undiagnosed, sometimes for many years. If you really want to know how long you have likely had a MPN, request your history of CBCs. You can look back and see when the elevations were present.

Regarding the fibromyalgia, I am wondering if you are referring to acetylsalicylic acid, the primary ingredient in medications like aspirin and diclofenac. There are a number of other medications used to treat fibromyalgia that may be more effective. This is something to consult with a rheumatologist about.

The level of swelling and pain your describe with the leg/knee requires immediate attention. This is not something to wait on. If you do not get a prompt response from the hospital, suggest you go to an Urgent Treatment Centre. It is worth noting that this level of inflammation is also a potential cause for reactive thrombocytosis. If the leg is warm/red/dark then you also need to be screened for a DVT, which is a risk in the context of a MPN. That is not to say that is what this is, but it is best not to take chances.

Please do let us know how you get on.

[mag123ben in reply to hunter5582]

Been to see my brother , lived in Summerset,who's got (C) stage 111. Bowel. Tried to get my information but I live in Wales. Felt like I lived on the moon. Now home so can concentrate on me. Will let you know when get some answers.

[Anag]

Hi Mag!

I was diagnosed 8 years too late. Was taking all kinds of meds to fix symptoms. Great doctors but blind, one after another.

Fibromyalgia. My 20 yr old has had it for 6 years. Was set off by stiess and EBV infection (Mononucleosis). She also has Lyme. 4 stems. Very hard to diagnose but I found a way. We had to clean the body through immaculate anti inflammatory diet, clean the liver over months, while balancing all vitamins and minerals (only best natural sources of vitamins!!!!) I can’t stress the importance of that! She drank lots of ginger tea made from ginger and also cinnamon stick and cloves in the tea. Heals the body from all invasive bacteria, viruses. She also did 7,5 g vitamin C injections, and intravenous Ozon. All this helped. She’s been off pain killers, that really debilitate the liver in great amounts as you have taken. I was doing that for many years after a terrible car accident. I also finally got proper treatment.

FM needs a good functional doctor conventional medicine has no answers every single body in so different! You need to be tested. Heavy metal burden also play a role in FM. The body must be cleaned, strengthen up slowly so that stronger therapies can be used to detox properly all this will help with MPNs it’s important to get your energy and life back quality of life is so important for us all! 😘

Hope to have helped. Anag