So many symptoms, so many questions.

[LoriBeth]

Hi, I've just been diagnosed with Fibro after a year of symptoms building up. It started whilst on holiday and I became so unwell, particularly with my breathing and severe head pain on the left. In the emergency room, they found my sodium level at 120 and a CT scan a severe viral sinus infection. After being treated with antibiotics and steroid sprays it left me with constant pain and symptoms allover.
Now, 16 months later I have so far been diagnosed with chronic left sided migraine and fibromyalgia. I asked for an inhaler add I still have breathing issues (but not asthma). Taking this has helped me with the ongoing sinus pain which I still had after the infection plus it's helped reduce my migraine pain and the length of time I have it. Finally, I've been diagnosed with Fibro after pushing for this to be done. I don't know if some of the other symptoms are fibro, or damage from the virus. Daily symptoms are chronic pain in my legs, mainly below knee, weakness in arms and pains in my neck (new) and fatigue. I often have red and sometimes burning cheeks. It's worse at night. Sometimes my left eyelid is puffy and red, and it feels dry. I get out of breath easily just from walking. I push myself to walk faster but it feels like I'm walking through mud and there are thick elastic bands tied around each leg. I have coordination issues and I waiver at times to the left. I have a previous injury on my right big toe. After the vital infecting the knuckle of this is red, I'm flamed and I have tingling up my calf. It only reduces when I elevate my foot and just rest it. I feel like my whole body is constantly inflamed (I don't drink or smoke). I try to pace myself so I don't get too unwell. The temperature though, only needs to drop a degree for pain to be worse, so pacing is dependent on that . I am taking pregablin (400mg) but I don't think it is working anymore. It's like my body is used to being on that dose now. I'm reluctant to take the naproxen aswell now as I don't think that's going to help my breathing issues. I've put on over a stone in a year and before all this I was slim and ultra fit. I would go to the gym 3 to 4 times a week plus bits and bobs in between. I feel left to manage these symptoms by myself . I feel that my doctor thinks that I'm a hypochondriac and that I'm making it up. I look ok, I look well, I walk. I cannot manage all the symptoms in my body and I struggle to manage the anxiety its given me. I am 54 and feel like my quality of life has been taken from me so soon. Acupuncture and sunshine are what help but I need other ways to reduce /manage the symptoms by myself as i feel the doctor cannot do anything else for me now except give me the pills when I need them. Any advice?

 

[cookiebaker]

hi LoriBeth - yes, there are many non-medication things you can try to reduce symptoms!

I recommend reading through this post to get a few ideas..
My advice for managing fibromyalgia (especially for newcomers)

hopefully some of those suggestions can help you feel better

 

[sunkacola]

Greetings LoriBeth, and welcome to the forum.
I second Cookiebaker's suggestion to read the advice post linked to above.

I always highly recommend that people try to manage fibromyalgia without medication first, and only take pain medication as a last resort or, as many of us here do, as only an occasional help when really needed.

You have a lot of company here, people who have been disbelieved or called hypochondriac, and so on. This is typical, in fact, so don't feel alone.
The truth is you are correct: doctors cannot do anything for you if you have fibromyalgia except give you pills, many of which only makes things worse with side effects or do nothing or are addictive.

That is why it is so important for you to take charge of your health and body care for yourself and find out what combination of activities, attitudes, food, supplements, and other things will help you the most.

Any questions you have, feel free to ask. We are here to help.

 

[Vanishing]

Hello LoriBeth !
Your expressions, labels and feelings are identical to many sufferers. Sadly fibromyalgia is a”lonely disease “. Many tests, lab work reveal few things that are actually isolated cases, such as arthritis, inflammation of different parts of body, infection, etc. - which is specifically named and coded. Trials with medications and different treatment. Yet one’s well being deteriorate, pain, insomnia and fatigue increases. Chills and burning skin becomes unbearable, non- stop nursing oneself with natural remedies contributes to more tiredness. Trips to eye doctors an other specialists never end. Yes, quality of life starts diminishing. Some flares last several weeks and medical staff continue to try to help vicious cycles.
Self-help and seeking any support became tha last resort in my case. I hope it will not be for you or anybody else.
I have absolutely simplify my surroundings that is not demanding on maintaining cleanness. Eating very
simple for my appetite change drastically. REST AND POSTPONING ANY SIMPLE ACTIVITIES is my only medication. I did developed some self-discipline and accepted changes - 35 years of medical bills, misdiagnosed and finally it was given name 3 years ago - Fybromyalgia and others. My blessing is that when my family agreed to come to all my appointments they became very empathetic, very helpful. I really appreciate your sincere description and wish that you will find some way of help and share with rest of us. This is the best place to cry and “complain”. Weight has nothing to do with this - it keeps changing after onset.
I also do have a very strong faith and am surrounded with friends that patiently educated themselves to understand this disease at least in some way. Do NOT ALLOW others or yourself to loose your precious VALUE .
”Vanishing “.

 

[MariaC]

Hello Lori-Beth,
I hear you and understand you sooo very well.
I was diagnosed with fibromyalgia in 2009 and hypothyroidism before that, in 2005. I lost hearing in one ear overnight in January 2005 and only found out I had hypothyroidism because of all the testing I underwent. The hearing loss turned out to be permanent with no known cause. Took a while to get the hypothyroidism under control as doctors have a TSH range of 1.00-4.00 to determine medication dosage. Seems like a small range but to someone suffering with this disorder, it is extreme. The unfortunate part is that no one knows where that value was before it went haywire. Trying to explain to a specialist that you would have more energy and a better mood at, say, 2.00 vs 3.00 is infuriating. They then try to make you believe it’s psychological. After months of repeating it to several doctors, my family practitioner finally agreed to give it a try and increased my dosage. We soon realized that if the TSH value was anywhere over 1.00 I would feel it and the test results confirmed it. One problem solved!
Then came along another…fibromyalgia! I started working out with a personal trainer at a gym January 2009 and instead of improving, my physical condition was deteriorating. In June of that year I collapsed while doing push-ups. I was convinced I had just experienced a mild heart attack as my chest was so tight I thought I was going to pass out. Normally, I would have thought my thyroid was acting up again, but the symptoms were very different for me. I had pain mostly, fatigue, obviously, with exertion only. Hypothyroidism makes me feel lethargic and tired without exertion.
As far as fibromyalgia goes, I am still in denial !!! I’ve been taking Lyrica and have added cannabis a few years ago. The cannabis helps keep me calmer and helps with the moodiness. I’m 62 now and the only advice I can give you is to take it day by day.
I’m a little bit OCD and a perfectionist so I know, better than anyone, that it is easier said than done. I still make to do lists, without a preset timeline though. I know, for a fact, it’ll take way longer to execute the tasks. The problem I still have is stopping myself from getting frustrated or feeling guilty for it.
Physically, keeping the pain at a tolerable level is necessary and this I do with medication! Emotionally, every day is a challenge so I try to focus on the tasks I can handle depending on my energy level. This way, I can scratch some items off my “To Do” list. It helps give me some sort of satisfaction for what I “did” do rather than frustration for what I did “not” do. The bigger tasks, I save for when I have a spare day to recover from the exertion. Staying positive is the only thing that makes it all possible.
Basically, we need to listen to our bodies!!
If it makes you feel any better, I still consider myself a hypochondriac, fortunately I have a very understanding doctor who doesn’t dismiss me. She realizes that, when I complain about something, I’m only trying to rule out the possibility of another medical issue.
So, the only advice I have is, firstly, to try to find a doctor who doesn’t dismiss your concerns, secondly, be kind to yourself.
You are no longer that person who can do anything and juggle everything.
Remember, there is always tomorrow. No one really cares if the laundry takes you 3 days instead of 1 or that you shower only twice a week because it’s too exhausting or that you’re having leftovers because you have no more energy after grocery shopping.
I know this because my family members keep repeating it to me. The hard part is convincing myself of this everyday.
Stay strong…you’re not alone!

 

[cookiebaker]

Took a while to get the hypothyroidism under control as doctors have a TSH range of 1.00-4.00 to determine medication dosage. Seems like a small range but to someone suffering with this disorder, it is extreme. The unfortunate part is that no one knows where that value was before it went haywire. Trying to explain to a specialist that you would have more energy and a better mood at, say, 2.00 vs 3.00 is infuriating. They then try to make you believe it’s psychological.

OMG, Yes!! I am going through this right now, attempting to get things under control...
Have told various docs for years that I had a hypothyroid problem, but because my TSH fell inside of their ranges (0.5 - 5.4 here) they kept telling me no, i didnt have a problem.. maybe i should try some anti-anxiety meds.. GRRrrrr

I now have a primary that is willing to work with me to get the TSH at least down to 2, possibly lower... time will tell if that will be enough.
just had my levothyroxine dosage bumped up today... TSH was actually up a little from the previous test, despite a dosage increase back then... we retest in about 8 weeks or so

 

[dw1256]

Trips to eye doctors an other specialists

Why did you mention specifically trips to the eye doctors?