This has been 3 weeks of a mighty mean flare up

General
1

Hi to all you fellow fibro sufferers,

I have not been on in awhile but would like to ask you all something. I was off work for a year and had learned to pace myself and look after myself and really thought I was feeling better. Insurance of course asked me to start a gradual back to work which was 4 hours /3 times a week .

I work with many people and after the 2 weeks I caught what felt like a horrible flu bug. Then it spiraled into the worst flare I have ever had and continues.

I went to my GP and he told the insurance company I was not ready to return. He gave me two weeks off.

I went to see him this week and he asked if I was going to return to work and I told him that I could not. Working outside doing very physical work in this winter weather in Alberta just kills me. He said that he thought my flare up was stress related because of them trying to push me back into work.

I know , I will soon get to my question.

So last week my Aunt calls me ( who has had the same issues with her body (mostly legs and feet) and was diagnosed with Primary Progressive MS>

I told my doc all my symptoms and that I was concerned about this. He said that people with fibro( not all but lots) want a concrete diagnosis so they can have better treatment and know exactly what they are dealing with. He told me he sees nothing that would warrant further testing ( MRI) and if there is something worse going on it will reveal itself eventually.

I told him I have been in pain 24/7 and cannot find any relief. It has been a serious 6-8 on a 10 scale and is all I can think about. He gave me 25 mg of Amitryptiline to take in the evening . I do take Cymbalta for the fibro ( but it does nothing for my pain.

I think the amitryptiline is making me a bit more tired which helps my sleep some.

OK HERE IS THE QUESTION??? Do any of you feel you have other stuff going on and not being taken seriously because of your fibro diagnosis?

I am very curious about this . I am finding it hard to think that fibro is putting me in all this pain and my doc just keeps telling me to take tylenol..

Could you tell me about your experience with this type of situation and how you feel about it. I would be very grateful. I almost feel confused about the whole thing..

Thanks for your time all of you !! Hugs Lisa

2

Dear Lisa,

I have read hundreds of profiles here and even if they do not list any other problems, sooner or later they either update their profile or post of other injuries, illnesses, or Overlap syndromes.

My Rheum and most of the really good info on Fibro talk about this being caused as a stress response in the form of trauma, injury or illness that cause it. He tells me that my Psoriatic Arthritis most likely caused my Fibro and I could have been diagnosed years and years sooner had they asked about family history and just looked at my pitted fingernails!

Do you see a Rheumatologist, can you ASK to see one?

I hope you can really take this by the horns and get some solid answers and substantial relief, it was not until I started Enbrel that my life started to change a little for the better. I'll never be my best again, but there is ALWAYS hope of some improvement!

Wishing you well,

SK

BTW, as good as the Enbrel is, I still take Daypro as an anti-inflammatory, only Lyrica helps the nerve pain, and for the really heavy pain, there is Morphine, and Ethyl Chloride spray!

3

Thanks Lovett, I agree with you . Sometimes it just feels like your doc thinks you are focusing too much on what is happening when I am trying to do is give him exact information about my symptoms and concerns. I also have severe obstructive central and mixed sleep apnea and asthma . which was found out only because I went to the city to emerge because I could not breathe properly.

I also think that sometimes the doc just chucks everything up to fibro and that does upset me. I am trying to move forward and as taking care of myself .. just do not get why it is all so much more pain than before when I was diagnosed. I really do appreciate the response from people wwwwwwwwwho have been thru this carazy medical system. Hugs Lisa

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Thankyou SK ,

It really does help to get others opinions of what is going on because I think many of you have been thru some of this type of situation.

I have only been seeing this Doc since May of this year so maybe he does not know me well enough and has put me in a group of complainers ( which I am not)

I am going to see how I feel this week and if I feel the same I am going back and ask him to send to pain management and I would really like to see a neurologist to rule out MS.

I do think part of the problem is the docs here in Alberta are being told to not send their patients for all kinds of testing to save money. I could be wrong but this is some of how I see it.

I did see a Rheumatologist ( which took over a year to get in ) last February.. He gave me a physical kind of exam and went on old blood tests from my previous doc and then looked at me and said I do not think you have gout!!!!! WHAT That was what my doc had apparently sent me for even tho my RA factor was positive and I was going thru lots of pain in my legs and body. She told me I had rheumatoid arthritis!!! What is going on with these people

He did tell me that I definitely had fibromyalgia as my muscular skeletal system was out of wack. .Had many pressure points. He said my GP could handle looking after me. Took me off gabapentin and that was it. I was there with him about 20 minutes.. After waiting over a year. He is one of the best here in Calgary so I have heard.

Anyway thanks for your info.. I am trying real hard to pace myself and do what is good for me. I just feel like we are not taken seriously most times and that is frustrating.

Hugs Lisa

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Thanks KHOLOMES,

I am doing my best and sure hope this major flare ends soon. I am going to give it a few days and hope that things settle down.

He has done blood tests and says they are all fine. So I will just have to get out of this flare and see how things go . If I am still in this kind of pain I will definitely go back and tell him.

I did ask him about Lyme, MS those are the two things that concern me , and he says no need to test right now for any of that. I just hope he is right and I am not causing my body damage by taking all this medication. I am on Cymbalta, now amitryptiline, crestor, norvasc,advir, ventolin and a C-pap machine at night. I know sounds like a lot doesn't it for a 56 year old.. Thanks for you help ..Hugs Patti

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Hi Lisa, I'm am Lisa too, I have horrible problems in my legs and feet, fibromyalgia diagnosis was 2yrs ago but after my ankle fusion due to damage from arthritis (both RA and Psoriatic arthritis) and getting blood clots from it, I seem to be getting worse all around. My legs hurt I cannot even sleep I'm so exhausted I just sob trying to walk around the house for some relief, it attacks the most at night, but both of my knees are swollen and flared up too from my arthritis so I have numerous things going on at once, the horrible tightening in the back of both of my legs, the pain in my feet is always here now, I cannot walk with out my cane or whell chair, I can't believe between the fibro and the arthritis I am where I am, I thought Fibro was just random nerve pain, it sure is a lot more than that and this recent flare has proven it. Do you also have arthritis? For me, I have tried very hot baths and it seems to take the edge off, but shortly after relaxing in bed it begins again. I had allergic reactions to cymbalta and avelox so at the moment due to my restless leg syndrome too, they have me on Requip and she has told me it tends to help with the fibro too. I'm exhausted my breathing is off at times, lets always hurt, to get up from sitting it kills me until I stay on them a bit, it's horrible all the way around if I stand more than about 15 min the back of especially my right leg just gets tight like it's going into a cramp and Ihave to get off of it. I do not like sitting on my butt all day and I try to walk around the house, but this disease makes you have to. How long is everyone's flares last? do they go away like arthritis flares and come back again? I'm going on almost a week now with only yesterday and today with some relief, I'm curious to get my I.V. it was due Fri but i was in the eR with symptoms and couldn't' get it so I'm late, I'm curious as to if the I.V. I get for Arthritis Remacaid 700mg 3 hour I.V. every 6 weeks. Is going to help with all of this. I sure hope so.

They say to keep your feet warm and not let the temp fluctuate as it could cause the fibro to act up more.

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Wow Lisa , I am so sorry you have gone thru all this. It sounds so much like what is going on with me.

I can only describe the pain like someone is pulling or tightening my muscles out of my legs and feet around something!!!

I have tried so hard to explain to the doc about this and my level of pain. It keeps me from sleeping at night , even with my C-pap.

I keep telling him I am going to be in a wheel chair soon if this keeps getting worse. It started over 2 years ago with pain in my toes and tingling and asleep all the time. The pain was terrible.

The Doc thought I had gout apparently but then the Rheumatologist said no.

Just told me I had fibro. I may go to a foot doctor to have my feet checked out.. That may be a good place to get someone to at least x-ray them.

By the end of the day or if I have walked up or down stairs I can barely walk. It hurts whether I stand, sit , lay , even when I have a bath. It does so consume my mind cause it just pain, and then some more pain.

Thankyou for sharing your story with me.. I am not happy to hear of your pain , but it makes me feel not so all alone. Does the cold weather make it all worse . It does for me.. Hugs Lisa

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Hi Lisa,

I'm actually surprised your doctor hasn't tested you for MS. I was tested for all kinds of things by a neurologist, when he couldn't find the answer after one of those nerve tests (that continued to really hurt after he stopped) I was dismissively told I had Fibromyalgia and to take anti-depressants. Guy, thought I was crazy, I was 22 and having a really hard time walking among other things. Two or so years later after I was being treated for symptoms of hypothyroidism (I was technically barely within the "normal range," but they get me the replacement pills to get it functioning higher). I then was able to go to a Rheumatologist that tested me for everything else it could possibly be. He told me to truly make a diagnoses of FM everything else has to be ruled out first (MS, lupus, etc.). I understand those things can be an addition to FM or the other way around - certainly those condition may not account for all the challenges/symptoms a person is having. But I'm surprised your doctor hasn't tested for it.

I find it frustrating that FM has taken so long to get acknowledged, that it can be a "scapegoat" when it's not easy to find out what's going on, and/or everything new just gets swept up into being part of the mysterious package. Health issues aren't easy and some like FM are really hard to figure out, but we're still people and every angle that can be taken I think should be.

Hope things workout better for you soon! Oh, and by the way I don't have MS and do have a lot of trouble with my legs, so it could be the FM, but especially with the family history your dr ought to check for MS.

*Hugs*

Butterflydragon

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dear lisa ~ it sounds like your doctor does not even understand the severity of fibro. people who talk about "just fibro" are the ones who are ignorant and invalidate us! ouch! if you can, why don't you go and see a neurologist? perhaps you need your GP to make a referral.

it also sounds like you are really undermedicated!!!!! just Tylenol would never help me!!! I had been in the moaning and crying type of flare for a long time, and my physiatrist called me in for an emergency shot of Toridol. I got almost instant relief. this is an anti inflammatory. wish I had known about this injection years ago!!!!

I pray that you will take steps to advocate for yourself as we all have to do. it is like swimming upstream so often, and I am sooooo sorry you are suffering so. trust me, I KNOW that horrific pain and most of us do. you are among fellow sufferers and dear friends...be comforted...hugs, annie

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Get another Dr. Pure and simple. Sue

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Thankyou ladies , I am guessing if things do not get better I will have to find a way tyo get to a neurologist. Tha is what I was asking for last time and he said I have fibro and I need to accept this..

Scary SH#T these docs. I have wanted to see one since this all started well over two years ago. I also forget what I am saying in the middle of a sentence and used to be a great speaker. I walk into a room and forget what I went for. the worst is some of the things going wrong like mixing up numbers and not spelling properly. I was great at spelling and writing. My hand writing used to be pretty but now it sucks, I will be walking my dog and swish my bladder will just let go no warning... have the same issues with my bowels. I need to be very close to a bathroom.My eyesight is messed up and I have been to the eye doc and he said I have high pressure and have been seeing double lately ( with headaches as well) Also see this zig zag pattern which looked psychedelic to me.He said I should keep an eye on the hight pressure. He also saw white spots on my eye which can be macular degeneration. He even showed me these.and said we should watch them.

Thanks for listening and I am very happy to read all these different posts. I am guessing I should tell him at least I need to talk with a phyciatrist because I am having a hard time adjusting to all this stuff. Thankyou for making my day brighter. Just knowing I have friends on here and can come and talk and get ideas and advice is wonderful . Hugs Lisa

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I too have problems with my PCP,,she thinks mt fibro pain is all in my head. I have had 2 tbi's, the worst effect coming with the second. She has even told me she believes I am malingering,,When I questioned her she was quite defensive, knows about the other probs,, the hypertension, hypothyroidism, heart murmur when stressed, anxiety, the usual cognitive issues, vestibular, and tinnitus, both obstructive and mixed sleep apnea. Was a working RN at the time of the second, had three boys and three step-daughters. I have seen many docs over the past 23 years, but this one is really scaring me. I am totally disabled, walk with a cane, also, have seen both neurophychiatrists, regular ones, and many psychcologists. No one has ever spoken to me as she did..I plan on changing PCP this year, because of her uncaring attitude. She even called my lawyer to inorm them they should tell me not to bother her again. I see pain management doc this week, a sleep doc and neurology , and my workmans comp neurologist next month,,So did you ever have a head injury? Post-concussion syndrome can also cause many of the same difficulties, Will keep you in my prayer, and hope we both get something accomplished concerning these crazy docs!

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HI Darly161, Thankyou for your post. I cannot remember hitting my head but ya never know. I have a lot of cognitive difficulties, really hard time walking any distance and just so many things that are wrong. I was always the healthiest person .. So I find this all very difficult to deal with.

I am 56 so I grew up thinking thaT DOCTORS KNOW IT ALL ( i NOW KNOW DIFFERENTLY BUT) still have the same respect and want to trust them.

I feel that I have kinda been labelled as I have never seen a neurologist, pain management doc , or even had my back checked out. I live in a very rural are in a town of 500 people which happens to be in Canada.

Up until this happened to me I thought we had a great medical system here. It took me a year and more to see the rheumy (he was rated as a good one for our area) he did no tests and told me I had fibromyalgia.

I thought OK I can deal with this but now that I am hurting 24/7 and with many more limitations i sure do not think it is OK.

I have slowly been going downhill for at least 4 years and it is all getting worse. I changed my last GP cause she went on mat leave and thought it was a good time to leave. She had me on lots of drugs which the Rheumy said I did not need. I kind of started fresh with my new doc and he has been pretty thorough but now I feel he justs wants me to accept fibro and not focus on anything else. I do not feel he is wrong but I just keep wondering as my pain seems so extreme and constant.

I am also dealing with my insurance for being off work and we shall see how that goes. Its all so scary to loose and have all these limitation and not know which direction to go.. It could be discs in my back giving me so much pain in my lower back , hips, legs, and feet. I am not a doctor so I do not know. What I do know is how I feel. Anyway thanks for letting me vent , that does help some. Hugs Patti

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This is a great question,I had been off work with this for eight years without an MRI because I had worked with metal and the of having shavingings in my eyes that might blind me,Well they figured any would be gone and it revealed that nobody had been counting the vertabra and that one had completely dissolved.So after many weight inducing shots and several knee surgeries I finally had a spinal fusion . It got rid of the Sciatica and some of the back pain ,not all .After a while I realized that the pain appeared to be separating ,to my back and front . Many years befor I had HPV18and back 30 years ago a wonderful doctor had told me I would probably get cacer from it.It felt like a upside down wine bottle of pain in the frontof my body that pain was pouring out of. But they thought it is just the Fibro and I kept complaining and they finnally sent to see a nurse that they said was a pain program ,hah,it was not.That didn't stop me from being in pain eitherFinnally they "fired" me as a patient for complaining about pain.When I finnally got past that and found an new primary,the brother of my shrink,they are Mayo's.He agreed with me I probably did have cancer and that was the first visit. I did and it was A1 cervical cancer HPV18 ,tell everyone you know male and female to getthe vacinations,it takes 3. I after surgery ,vhemo,and radiation,and kidney failure feeling quite alot better. Even though I am still disabled at least there is some hope now of regaining some muscle and stamina through exercise,that was where improper treatment and apathetic doctors got me . Who knows I might not have needed the chemo and radiation if they had actually been listening, so yea they can miss other conditions because they attribute it to fibro.Good luck and be kind to yourself you deserve it..

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Yes, Lisa, most of us have had doctors that seem to discount what we know about our bodies. Maybe you need a new doctor--or maybe (see earlier discussion) adding some alternative therapies would help. While you may have more than fibro, remember this has been a time of changing weather and changing seasons, and that almost always wreaks havoc with our whole systems--I know it did with mine! Anyway, good luck to you. Know that we're all with you.

Madeena

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Thank you all for your wonderful ideas. I will certainly think this one thru and get another opinion. I do believe that weather does play a big part. I don't even want to leave the house.

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Lisa...I know I have other stuff going on....just wish I had the mean-ness in me to wave it in the face of the physicians that poo pooed me back in the day. I wonder if it isn't because they know fibro patients are or possibly can be a hand full of symptoms and other ailments that show up or are recognized as the Dr. Patient relationship develops.

I had a Neurologist say something to me on our first meeting (and last, it was his last day) I found it quite interesting...and still do.

I told him I was aware that this was his last day...he was retiring. He said " yes, unless you've got something rare that I can get all wrapped up in. I like the rare cases." Come to find out, he was the first to diagnose one of my conditions, a rare one to boot, but he could only say possibly that I could have this condition...he never got to find out for sure.

My current Dr. read some of the reports from my previous PA and told me that she wasn't going to give what was written in there much further thought as my previous had written that she believed I wanted to be sick and with the rare ones to boot. She gave a medical term for it but I can't remember. My new Dr. of course had tests and reports to the contrary in my file but it gave me hope to be treated with compassion for once in my medical history...They said..."we're just going to disregard these records. We're so sorry you were treated this way.

I think other things come with fibro because I knows as a sufferer. Demand to be respected or take someone with you that will demand it for you.

That works for me. Be sweet to yourself. PeacenLove Always~Laurel