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Fibromyalgia
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Posted 8/18/2016 3:30 PM (GMT 0)
Hello everyone,

I am usually over on the anxiety and panic forum.

I will give you a quick background so you understand where I am coming from. I am currently 25, from Canada. I have been ill 4 years this month. I was in university at the time working toward my science degree and veterinary school. Started with back pain, intense fatigue, headaches, anxiety attacks, and muscle stiffness and soreness. It progressed to all those things and heart palpitations, tachycardia, arthritis, etc. After a year and a bit I was bedridden and had to take a break from school. Numerous visits to the ER...couldn't find anything heart was normal just liked to beat fast sometimes. Lots of doctors, specialists, etc. nothing except anxiety. Was put on a beta blocker which stops the heart palps and tachycardia which is great. Saw my rheumatologist on monday and he always beats around the bush so I asked directly, what is this?

I had a great 4-5months from january to may when I went and got a job, only went downhill from there. Was laid off after 5 weeks due to lack of work...I was thankful because I didn't think I would make it much longer I was exhausted and in pain and the anxiety was torture. Back to the rheumatologist appt... He poked and prodded and asked questions and the answer to my question was our best guess is something like fibromyalgia plus the underlying undetermined type of arthritis. Peachy...now I know many of you have faced the same diagnosis and confusion and frustration to go along with it. Fibro is a real thing but in my case I don't think that is what it is but because of the way this presents itself I will never truly know unless it progresses or whatnot. This is what he is waiting for, for it to progress into something more definable but until then fibro is the name.

I knew this was coming for years but now that is has been said it hits home as I'm sure it did for everyone here. How am I going to deal with this? How am I going to work? (Already been denied disability here because I'm not sick enough to not work according to the government) How can I expect my boyfriend of 7 months to take me on when he is completely normal? He seems to be ok right now when we only see each other 1 or 2 days a week but if it goes more committed and we move in together...I don't think it will go so well but who knows. There is so much uncertainty with this...one day I can get up function and go for a walk or something and the next day I'm so down and out I can't get off the couch. Then there is the parents who say now that I have had a job and that I "look fine" say that I am fine and I just have to push myself and ignore all my symptoms and I will be fine...no I won't I know this, ya I look fine to everybody but I feel horrible in reality.

Anyone have any suggestions on where to start to deal with this and to find answers to the questions above? I'm open to anything at this point to try to make life a little more comfortable. The rheumy basically said until I have a medical plan or get a job there isn't anything else he can offer me and even then those things probably won't give me any desired results. Gah!!!! Just so frustrated. Thanks for listening to my rant if you made it this far :p
Posted 8/18/2016 9:41 PM (GMT 0)
Hi, Jumper, and welcome! This illness is very frustrating and I understand where you are coming from. Has your doctor run tests to rule out things like lupus or Lyme disease? They have many of the same symptoms as fibro but their treatments are different. There is no good test for fibro so it becomes a process of elimination to get a diagnosis of Fibromyalgia.

People with fibro have pain in all four quadrants of the body. We generally have some cognitive memory problems too. We get a lot of weird things too like burning, stinging pain. I sometimes feel like water is running down my leg or like a bug is walking on me. Some of us have IBS issues too.

Anxiety does rear its ugly head. Fibro can be frightening! I suffered with anxiety quite badly but finally managed to get a handle on it once I realized it was just fear and I really didn't have to be afraid of with this illness. I just had to learn how to control the pain and move forward...not dwelling on illness all of the time. I also used the scripture I have in my signature to help me.

Positive thinking is a huge help too with anxiety and fibro. I focus on all the good things in my life and the pain fades somewhat in the background. I have had fibro for over 28 year and have had a full and enjoyable life in spite of this illness. I raised three children, did a lot of traveling, and did things I never thought I could do with fibro. I always try and am surprised what I am able to do. So I think your relationship can be fine. Really try not to dwell on how you feel all of the time. Your partner will know. Just live your life to the very best of your ability and don't forget to put a pretty smile on your face!

If you have fibro, it's very important to keep moving. This helps with pain and also energy. If you sit or lay too long you will be stiff as a board and have more pain.

I use ibuprofen with food, Tylenol, magnesium malate, vitamin D3, and a prescription muscle relaxer called Robaxin that has made a significant difference in my pain. I also walk daily and pace myself when doing things. This all helps me be in control of my pain.

Be sure to read Fibro 101...the first thread on the forum. There are good links to information about fibromyalgia and you will learn a lot there. Good starting links would be Symptoms, What Else Could It Be, and A Thorough Explanation of Fibromyalgia. There is a good link on how to maintain a positive attitude when you have chronic pain too. All of Fibro 101 is good so do read it.

I'm looking forward to getting to know you better. Don't hesitate to ask questions because we are here to help you. Hope to hear more from you soon.

Sherrine
Posted 8/19/2016 1:42 AM (GMT 0)
Most of us have had others tell us , just push harder you will be good..

Many still think of this as a not real disease, especially if they do not have it.

I get about 50 per cent of my help from my family dr. His wife has fibro , so he tries to understand it..

Most of us have had to learn other self help measures, that improve our condition but surely do not cure it.

For fatigue, you may want to research d ribose..with its help i raised two children , kept our home, did volunteer work.

Its not easy but you can live pretty normally . We have to pace ourselves though. If we are having a flare , we sometimes have to give into it and rest.

When i worked full time, i drove an hour each way, and had to rest on the weekend as much as possible.

For me i have always reacted to weather fronts dramatically. I do use some low dose tramadol to keep the edge off of pain.

We still do better to try to keep moving. Otherwise we stiffen and our pain is worse.

Lots of good folks here, ask questions, lj
Posted 8/19/2016 2:27 AM (GMT 0)
Thanks for the responses Sherrine and Ljm2014 :)

Yes I have been tested for everything under the sun including lupus and lyme disease...the only things that come back in my bloodwork are high sedimentation rate and crp (?) which doesn't indicate anything specific. I cannot complain about doctors running tests cause they have done them all lol.

The thing is mine isn't really pain it is just discomfort and aching and stiffness mostly...I had some pain in the beginning but I was put on plaquenil for arthritis and that takes the pain pain away.

I think I was bedridden for that year because I was terrified!! Nobody told me what was going on and that it was mostly anxiety keeping me house/bed bound. I do deal with it much better now since I haven't had any new symptoms in 2 years or so and none of the ones I do have are deadly but I mostly get anxious about doing new things.

Thanks guys for telling me that you guys still function and do what you want to do. Now that I think about it I have had a great summer and have done the most I have done since I have gotten ill. Went to a baseball game, medieval times, a theater play, and Niagara falls...all with the boyfriend who was very patient when I was silly anxious about it all or needed to rest. Nice to know others have found good ground and can still enjoy life!!

I will look into d ribose thanks ljm2014 :) I was thinking about a muscle relaxer so thanks and I will mention it to my doctor next visit.

I hear you!! Weather is torture...massive rain moved through the last 2 weekends and I just felt 5 times worse. I have been walking daily unless weather prevents it or like today when I really just couldn't.

Thanks so much and I will definitely ask questions if/as they arise :)
Posted 8/19/2016 3:18 AM (GMT 0)
CRP stands for C-Reactive Protein. This blood test checks for inflammation. That's probably why you were put on Plaquenil. I have a lot of the inflammation but I also have several inflammatory illnesses. Fibromyalgia is not considered an inflammatory illness. We have members with no inflammation showing in their blood work.

I'm glad you have had a good summer! Just keep enjoying your life and making memories.

Sherrine
Posted 8/29/2016 4:01 PM (GMT 0)
Jumper, Hi. I'm sorry you are going through so much. I was diagnosed with fibro. four year ago after they couldn't figure out any other diagnosis. I went from internist, to neurologist, specialists, etc... I have recently been bitten by a tick (found tick and bullseye). Since seeing an LLMD (lyme literate medical doctor), I now think I had lyme the entire time. Most lyme tests come back negative. Fibromyalgia and CFS are very common with chronic lyme. I would get another lyme test from a lab called IgenX and make sure they do the western blot test. The red flag was your vet school, which tells me you love animals. That is me too and pretty sure I got the tick from my dog. Please have another test done I think it will help you. Good luck.
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