Is this Fibro or something else?

General
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Hi, I’m new to this site and am hoping to find clarity I’ve been missing from non listening doctors. Years ago I was diagnosed with Fibro/Chronic Fatigue from a doctor that just wanted to throw meds at me. As a single mom who had two kids (one special needs) working a full time that just didn’t fit into my schedule I guess you could say… lol. I also must add I hate meds. I do have a history of working in the medical field so am not lost when discussing issues with medical professionals.

A little history of me, I played multiple sports starting at 3 years old, I was EMS so many back injuries lifting patients, I’ve had lower back surgery and spine surgery with spinal stimulator implant placement after developing drop foot due to excessive scar tissue development from back surgery, 2 shoulder surgeries, toe joint replacement (really???). I was also diagnosed with Graves disease 20 months ago but the meds they put me on caused my hair to fall out in chunks so had to stop that.
also where I should have been losing weight from that I rapidly gained 30+ lbs. in about 2 months and even with them putting me on 3 different types of perscription weight loss meds (my stimulator no longer works due to weight gain and therefor can’t charge it) I never lost 1 single pound!!! :sob: I’ve always lived my life that if someone else could do it, I could do it be it a woman or a man… so I guess I have justified my pains in that as bad as I have beaten my body up “it should hurt”. Only recently have I decided that this just is not normal for my age no matter how bad I’ve treated myself as I have not been run over by a 18-wheeler nor been crushed.

I work as a Insurance Agency Manager now and did have a at home bakery but had to stop the baking business due to the pain. I go home daily and have to hit the couch for the rest of the night. I also once monthly waitress for my boss at his other business on a special dinner he has and after the 2.5 hours I can hardly move. Last weekend I baked 2 regular cakes as a Thank You and was down in almost tears the rest of the night. I tried going to the gym and it took me days to get over 20 minutes on a treadmill. When I get like this my bones actually hurt, my skin is tender to touch, my joints ache. I joke to my hubby that I wonder if my finger is broke as everywhere I touch hurts. I don’t think I have the fog that everyone talks about but sometimes I have to stop and think about a word… I have noticed I don’t handle stress as well as I once did where I thrived under pressure. And I cry over the smallest thing… anyone crys on TV, I cry with them, lol I don’t feel like I’m depressed… I’m not sad about anything. Frustrated about not knowing what this is. But depressed, oh pitiful me… No. My son and I have this saying: You can either define it or it will define you and I refuse to allow anything to define me. I can deal with what I know, it’s the now knowing that I can’t handle. And the doctors either treat you like you are a hypercondriact or crazy and want to treat each individual thing and never look at the whole.

So, can someone help me figure out if I do in fact have Fibro, if it’s a autoimmune issue or what? I have no clue what to look for as to what is normal age issues or what is a “problem” My husband is younger than I am so I’m just getting old to him lol. And what type of actual doctor do I need to see vs. a GP

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Hey Vickie,
Welcome to Ben’s Friends.

I’m in Australia, so our systems are a little different to yours. But here we have GP’s (general practitioners), then we have physicians, then specialists. A physician’s role is to investigate the whole person, then establish which specialists would be best to manage the specific condition. So they send you for tests, scans etc then make a diagnosis from there based on the evidence from those tests. The other option is to find a medical advocate, someone who will push or advocate on your behalf. Often, as a patient, advocating for self can be difficult. The label of ‘hypochondriac’ is infuriatingly common especially when self advocating, there are a couple of other labels that are also given: Idiopathic in nature (or ‘there’s no reason for it’), and Psychosomatic (or ‘it’s all in their head’). Some GP’s are great at making out that they know-it-all. They don’t. For your common ‘run of the mill’ conditions, sure they may know, but the idea they know EVERYTHING is more a case of their own egos running wild. Rather then admit that their knowledge is lacking it’s easier to put it back on the patient themselves. By having someone outside of self pushing for an answer it often minimises the use of these labels.

Personally, I have been given all 3 of these labels, that was until they actually establish that I wasn’t crazy and there was a genuine medical issue, but it took many years (Decades) of battling the medical fraternity and ending up in a life threatening situation before they properly investigated.

As you have found some dr’s are great with the idea ‘We’ll give you a pill for that’ but often medication will only mask the underlying issue and the side effects of some meds can be worse than the condition they are trying to treat. Then you can get to a point where you are taking meds to counteract the side effects of another med. Some of these can mess with your mind, mess with your insides and as if your not feeling bad enough already the medicos can discredit your symptoms due to over medication.

I can assure you, you are not the only one having these battles and you won’t be the last. Many of us with rare conditions have taken this very same journey and tell that hubby of yours it’s not always an age thing either. My wife is older than me (MUCH older. I keep asking her what the dinosaurs were like LOL) but she’s much healthier than I. Grrrrr.

My advice: Get yourself a medical/patient advocate. Here’s a link that may assist.

Merl from the Moderator Support Team

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Thank you so much Merl,
Yes, I’ve about given up and am at the point I hate doctors and going to them and the hubby is tired of hearing it. He says “well go to the doctor”, “I don’t know what to tell you”, “well find another doctor”, “what’s wrong now”, and honestly I can take pain, lots of pain as I walked around for 6 months with a broken collar bone even painting my kitchen with that arm and went to work with 3 blown disk in my back sooooo, once I finally verbalize my pain IT’S BAD. I absolutley hate meds and refuse to take pain meds as I was given them as a teen by doctors that just fed them to you like candy and therefore built a tolerence to it so since and with my children if you aren’t in tears you can take ibuprophen, lol I’ve had most surgeries in my adult life narcotic free except the stimulator and whewwww I don’t wish that on anyone but was worth it. I am very in tune with my body however and therefore know that this isn’t normal, that the little things are a small portion of a bigger whole and if it is in fact Fibro then ok, I will deal with it, I will manage it and figure out how to manage my ever changing new me it seems so that it works for me not against me. I just can’t do that not knowing.

Is there a list or something that I can look at that shows all the symptoms common and non common? Maybe that says if you have so many of these your chance of having Fibro/CF is high? Like I said I’m wondering if it’s this or a Immune issue as about 10 years ago I all of a sudden started becoming allergic to all of these things, meds, ect. so it was like my body started changing and attacking for some reason. Things I had eaten my whole life I was all of a sudden allergic to, detergents I had used for years I was allergic to. Plants, soap, etc. I also have eye sight issues yet my doctor states that my eyes are the same perscription (+.50 )yet I can’t see a darn thing out of my glasses… I have had to buy reading glasses (+.200) so that’s a big difference. I for the life of me can’t see how I test the same when I legit can’t even see a cell phone without my reading glasses. I so bad want to say forget the gadgets look at my eyes while I’m trying to read a book or phone!
as for seeing the doctors I wonder if it’s because they see me during the day when I’m good… not at the end of the day. After I stop. After I seize up. I’m mostly ok as long as I keep going unless I’m going at 100mph or doing something really taxing and then I’ll start seizing up in my back early before stopping but the doctors do not see that part. The I can hardly move part. The can’t move and breath at the same time part… And that’s what gets me the most is being needy when I’ve always been the caretaker I guess.

I will for sure look into the AdvoConnection Merl and I appreciate this platform!

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Merl, my friend

You are lucky to even be alive. Oh boy.
:grimacing:

Seenie

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Gruttles, welcome here.

Don’t pay attention to my teasing Merl. we’re all friends here. (We met online … that’s my story!)

I’m sorry you’re going through this. I don’t have fibro, but I’ve been in that place too: first being undiagnosed, then poorly diagnosed. There comes a point where you hear yourself saying “Wait a minute now … something doesn’t compute.”

Am I correct in understanding that your GP diagnosed you as having Fibro? What stands out for me is your other issues: back problems, replaced toe joint, seizing up after sitting a while, shoulder surgeries … I’m no doc, but my instinct is that there’s more going on with you than is being taken into account.

I think I’d be asking to see a rheumatologist if you haven’t seen one already. They are specialists in fibro and auto-immune issues.

We’re so glad that you found us and joined!

Seenie

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Hey Gruttles,
Ohh believe me I know all too well that belief that ‘The dr’s know best’. Well, I’m sorry to say it like this but “NO THEY BLOODY DON’T” I had a specialist tell me I simply had a low tolerance to pain, I had to leave his consulting rooms because my physical reaction was ‘KILL HIM’, I was so angry. Standing on the outside it is easy to dismiss, but we have to manage this EVERY DAY and when symptoms fluctuate so much management is not as simple as ‘Just take a pill’ despite it often being a dr’s recommendation.
You NEED a specialist, someone who actually has some sort of comprehension of just how bad things can be. I would certainly recommend you follow through with Seenie’s suggestion of finding a rheumatologist, someone who specialises in fibro but also has a knowledge of auto-immune issues. Often fibro can be the primary but not the only condition triggered by an auto-immune response.

Seenie, “You are lucky to even be alive.” and don’t I know it. hee hee hee
If those looks of daggers I get, actually had knives, I’d have been dead long ago LOL

Merl from the Moderator Support Team

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Seenie,
Yes, Lots of surgeries that I’ve put off to all the terrible treatment I’ve given my body over the years both through sports and EMS, I’ve had 3 ruptured disc, degenerative disc disease they said basicly from my early 20’s, my back surgery for disc’s caused massive scar tissue growth which caused drop foot and therefore placement of spinal stimulator. 2 shoulder surgeries - 1 after displacement and it wouldn’t stay in, the other after finding I’d had broken collar bone for about 6 months and no clue how it got broken (obviously wouldn’t heal), after having several months of crazy symptoms I went to doctor and was then sent to specialist and was diagnosed with Graves Disease, I have Barretts disease I was told a year ago, Neurocardiogenicsyncopy, I swear I’m falling the heck apart!!! I walk upstairs to my bedroom and back down and am winded and hubby is looking at me as if I snuck out the house and ran a mile with a dog chasing me… I fall a few times a year down our stairs and hubby says “you just had to have two story house” (I wasn’t falling then) but then I’ve fallen on the flat floor as well soooo can’t just blame the stairs! hahaha I now walk sideways and hold the spindles above me as I go. I thought I had arthritis after gout and went to doctor over my big toe only to find out my metatarsal was sitting above all the other bones causing the joint not to move properly and due to the damage that had caused I had to have joint replacement in my big toe… thinking it could have been due to breaking that foot I asked and doctor assured me that wasn’t the case as my other foot was the same!:weary: I also have knots in ball of my feet to the point it wears holes in my shoes (no clue what they are???) and knot in my back at the edge of my shoulder blade. My back just seizes up so bad. I literally planted 7 potted plants this past weekend and couldn’t move afterwards and was sitting down most of the time while doing it. My hubby fusses at me for not stopping sometimes but it’s because I know when I do I won’t be able to move. My house if a mess because I just can’t hold out to clean/organize it.

What kills me is I was a athlete, I worked 3 jobs at 15 years old, I’ve always had the mentality if a man could do it, I could do it! I could out play, out work, be stronger, smarter, etc. so this is not only physically but mentally kicking my butt and I have to figure out who and what my competitor is so I can come up with my plan of action for defeat if that helps… That’s just how I have lived my whole life. I’ve always believed I can do anything if I want it bad enough and am willing enough.

I’m glad you mentioned a rheumatologist as I was looking them up yesterday myself and what they do. I’m thinking that is in fact my next step. I have a appointment next week with my GP who is making me go in just to fill two perscriptions even though she’s seen me a few times this year… guess she hasn’t seen me specifically for the med so she want’s to charge me a office visit to call in a perscription for meds I have been on for years for migrains… :rage::face_with_symbols_over_mouth:

I really appreciate you all for your comments and advice. Can’t tell you how much it means to be able to verbalize my feelings to someone who doesn’t jugde, get frustrated or doesn’t want to hear it.

Gruttles

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Gruttles,

I know exactly what you’re talking about. I was a state champion swimmer performing at a very elite level.

Fortunately, I’ve had pretty good docs.

My fibro symptoms started in my early forties. I’m 55 now. At first it was extremely hard for me to accept that I had ANY limitations. I was still swimming and competing. One of my first docs “suggested” that I had fibro, but I refused to accept that diagnosis saying “that is just a dumping bucket for I don’t know what is wrong with you”. This was around 2003. I tried several medications with no real results but lots of side effects. After three years of suffering (pure hell), I begrudgingly asked my new doc (a D.O.) to be referred to a rheumatologist and neurologist.

When I visited the rheuma, he diagnosed me in 2 minutes saying I had FM and a genetic hyper-mobility disorder called Ehlers-Danlos Syndrome. There was nothing he could do about the EDS but he put me on a very high dose of 1800mg of gabapentin (i.e. Neurontin) and 225mg of Effexor for the FM. Both at or exceeding the max recommended daily dose. It immediately (within 4 weeks) reduced my pain.

Although my pain was now mostly manageable with massage, medication, and therapy, the bigger pain was not accepting that I could no longer perform sports at the level I knew people my age and ability were. As an example prior to my symptoms, I was in the top 5 in the nation in my event in my age group. Yet after my symptoms surfaced, I was not even in the top 20 in my age group. That was my reasonably scientific yardstick. Many people who aren’t/weren’t as athletic as you or I can’t really understand what it is like to not be able to compete at the same level we’ve always been at. I do!

Since, then I’ve been taken off gabapentin and put on Lyrica. There is weight gain with both. But I’d rather have manageable pain and have to manage my weight more than have unmanaged pain.

Well, here’s what works for me:

  1. I’ve faced the fact, that I will most likely never compete at the level I used to. Yeah, I still compete every so often, but now I no longer use that as a gauge of my happiness or success. Managing my pain is now that gauge. You don’t need to prove anything to anybody. I now workout simply because I love to workout. I swim alone now (not on a team) that way I’m not tempted to push myself too hard.

  2. I still swim a lot, but those workouts are greatly managed. I never under any circumstances exceed the limits that my body and FB have imposed on me. I do push up against those limits every day trying to increase them (very important for me!), but I do my best to NEVER exceed them. That is extremely important!!! If I do, I pay the price and experience the exact symptoms you described earlier.

  3. If something the doc prescribes or says makes sense but doesn’t exactly work, I work with them to come up with a better solution. Such as: when I first started Effexor, my pain was managed but I was loopy all of the time. Totally non-functional. So I asked to split my one big dose of it into 3 small doses. No more loopiness and the pain was still manageable.

  4. Walk away from the docs that aren’t helping you. Fortunately, we have fantastic insurance. Most of my docs have been great, but when one of them tells you something or does something that doesn’t mesh with you, walk away, you’re not going to win an argument with them. ex: I had a Ear, Nose, and Throat guy tell me my deviated septum and sleep apnea didn’t effect FB at all. He was an idiot so I politely listened, not challenging him, and went back to my rhuma to get a new referral to another ENT. He had my nose fixed and a CPAP machine in a few weeks. Now I sleep through most nights with less pain.

Now, what works for me, may or may not work for you. The patient advocate idea is a fantastic one. I wish I had known about them 15 years ago!!

The most important thing is one foot in front of the other, keep trying things and find out what works for you and stick with them religiously. But NEVER, EVER, UNDER ANY CIRCUMSTANCES, STOP TRYING! Failure is always an option, quitting isn’t.

I wish you all the best,
Allen

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I just realized I mentioned “limits” with out defining what that means for me now.

Those limits are what I can do whether it be swimming, gardening, or working and remain functional. As my pain is managed most of the time my working out limit is defined by pain still being managed after I workout.

If I workout too hard, my pain will spike.

These limits are NOT what my body can physically do; they are what I can physically do without have a FM flare! Never exceed that limit.

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I have had fibro for 20 years, it does sound like you may have fibro. I too have skin tender to touch. There are 40 identified companion conditions to fibro, I have had or do have many of them. I do not give in to the pain, it bothers me mentally to sit and do nothing but think about the pain. Exercise does help, I have been un-medicated for yrs now and a year ago was finally in so much pain I worked up to a regular exercise routine. You have to start with any small amount you can get through. There are days I have a heat & massage pad on my shoulders while I am on the elliptical. My exercise goal is every day, I have not missed many days in a year. One day I spend 1 1/2 hrs using a Total Gym & elliptical machine. On alternate days 45 minutes on elliptical only. It does not relieve all my pain by any means but I feel better the days I exercise and worse on the days I skip exercise. I have taken over 25 different meds over the 20 years. The only combination that gave me some relief from the pain was Savella combined with Lyrica. It helped for 6 yrs but then I had to go off the Lyrica(causing suicidal thoughts). I don’t like meds either and have never been open to any pain meds that could be addictive, however I am not willing to abandon finding something to relieve the pain & exhaustion. You can easily find out if you have an autoimmune disease by seeing a rheumatologist, they will test you for all the known autoimmune diseases. A fibro diagnosis is only arrived at by a process of elimination. You are tested for various conditions your symptoms could indicate. All my results were negative. The fibro is then confirmed if you have pain at a certain percentage of the known trigger points. I suggest you at least see a doctor to rule out more serious treatable conditions.

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Allen_H,

Thanks so much for your response. Our similarities are unreal. I was a competitive swimmer as well when I was younger but gave it up due to an overbearing parent at 15. My son also has a unique combo case of Marfans and Loeys-Dietz syndromes (got it from his dad) which is in the family with EDS. That would be why I said when diagnosed I did not have time for FB as I was averaging around 70 doctor appointments a year with him to specialists as he has as I said a unique and severe case.

What I do wonder is how do you know between what is your normal and what is a “flare” because I hurt mostly at night and then when I’m physically active out of my norm of work, home to the couch. And it doesn’t have to be major, like I said I potted 7 plants and couldn’t move the rest of the night and felt like all my muscles just seized up on me. To me that was nothing really. Cooking a couple cakes, just standing in my kitchen for a couple hours - down seized up again…

I used to work out like a animal but with everything I haven’t done it in so long I don’t even know all this new equipment anymore and the gym I went to didn’t even show you how to use it much less give any suggestions. It was free weights when I was working out back in the day, lol I feel like it’s so sad that I almost need a full body scan to see if anything is torn or damaged at this point from all my falls but can’t get MRI due to this stimulator. I know I can’t put pressure on knee (like sitting indian style) due to falls, can’t walk tread mill due to shin splints so just kinda wondering what is ok and worried about doing something harmful on my own. Wondering if a hospital based physical therapy gym is the best place to start with that.

I plan to ask my GP tomorrow to send me to a rheumatologist. I’m really hoping that works. I do think that is my next move. I totally get what you and others say about the weight vs. pain thing with the meds but it is different with women and especially women like myself who have been emotionally destroyed by those who were supposed to love and accept them no matter what for their weight. Add to that the athelete aspect where weight is all important and for me it is a major mental issue especially when your talking 13lbs in 10 days or 30+ lbs in less than 2 months. No matter what I tell my self, no matter what I “know” is right, what I SEE is totally different and I hear the comments all over so it’s sad that the 46 yr old me can’t undo what was done to the 22 and younger me. Right now I’m on Voltaren which is helping a little, but dear lord if I miss it…

Just wish my husband REALLY understood that this is real. He switches between either fussing at me for doing too much or either I’m lazy. He asks me what’s wrong and if I say nothing he keeps asking till I tell him then he says I complain all the time. Like I can not win. Thankfully I have a office job that I can do but then I work sometimes till 7-7:30pm so I’m done at that point.

I guess I am just going to have to take my own advice and suck it up buttercup, lol Based on what everyone is saying it’s looking like I may verywell have FB and learn to live my best life with it…

You all are a fantastic group and I’m so very thankfull to have found you!!!

Gruttles

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Hi Gruttles,

Got your post. I’m away on vacation until next week. I started a reply on my phone telling my full story and half way through it i accidentally obliterated it. Grrr. That’s what I get for responding at 1am in bed!

I’ll wait to reply when I get home to the computer so I can avoid the frustration of losing it again.

In the meantime, know you have people here that know what you’re going through and support you whether it’s a good day or a rotten one.

Allen