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Why don’t my Family understand what Fibro does to me?

Tisme72 profile image
27 Replies

Despite everything that I put in front of them and how much my GP has told my wife I still get sarcastic comments about when I just can’t push myself any further with doing things?

I suppose it doesn’t help that in my 40’s I was almost ready to enter the over 40’s Bodybuilding novice championships! However ever since my 50’s I knew there was something wrong with me, fatigue, pain when I exercised, general aches and pains that were worse than I had ever experienced etc. So I went to my GP and got sent for blood tests for numerous conditions that could be related to it; all came back negative. I was relieved that the results were negative, but didn’t understand why it wasn’t going away. So fast forward 10 years and it had got worse, especially in the winter, again sent for blood tests, again all negative. So sent to Pain clinic for assessment - given Painkillers, as the pain was quite bad by now Tramadol! Some relief for a few weeks, then it gradually came back, higher dose………. This became a cycle, later came Butrans patches….. the cycle happened again. It got to the point where the only next option was Fentanyl.

Fortunately I knew about it before I started, I spoke to my GP who like myself was rather concerned about what was happening, he said that there was a rare condition that could mean that strong painkillers could be ineffective and also could actually cause more pain! He suggested that we worked towards getting me off them and to get me assessed properly for what he thought may be Fibro.

Cutting a long story short 2 years later I was clean and diagnosed with Fibro! Since then I have been able to learn and understand what it is, what it does and how you have to live to survive with it. Fortunately for me this is my only health issue apart from being overweight which I’m currently trying to address. One of the biggest inspirations I’ve had is Ren and his performance of Hi Ren, it’s helped me to see life differently and to be able to cope better. The only thing left really is to sort my Family out, which isn’t going to be easy.

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Tisme72
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27 Replies
LittleDaisy67 profile image
LittleDaisy67

Hi Tisme72I, for one, and as I recently discovered, many more will agree with you on this. See my post 'unsympathetic husband ' and the many supportive replies. Family OK with my condition, sons and daughter in law, but husband, a constant battle. Takes many a meltdown to get the point across and some success, til the next time. Its hard enough to accept for yourself that while you look OK, to those on the outside, you are a changed person with this oddly named, relatively unknown illness that takes away your independence as well as your formerly active self! Big, gentle hugs to you , keep your chin up 🙏

Tisme72 profile image
Tisme72 in reply toLittleDaisy67

Thanks, I will take a look - it’s good to know that you’re not alone in having this issue, today I’ve made my mind up that if I’m not consistently listened to and it’s appreciated that I’m not trying to get out of doing things I am going to go and live in our holiday home for a while and give them time to think about things. I’ve had enough of it!

AllthatGlitters profile image
AllthatGlitters

Hi I show people the “spoon theory” maybe that so would help them to understand it better. I have multiple conditions and some of my family are sympathetic and know I have limits, however my mother in law can be a right 🤬and have a go at me for being ill. I am sure people who don’t go through health worries, never full get it when we are poorly or need help x

Brigga profile image
Brigga

Just wanted to say well done for getting off the pain killers. It can’t have been easy. I suppose that’s why doctors are no longer prescribing pain killers for fibromyalgia. I think a lot of us have issues with some family and friends not understanding. I’m blessed that my husband is understanding but other family not so much.

Nelly1 profile image
Nelly1

Hi, I’m posting this in 2 parts as it’s too long for one post. It’s a very good description of Fibro and how it affects us and those around you.

Dear Concerned,

You’ve recently asked me about fibromyalgia and I’m sure you’re wondering what all the hype is about. While most people have heard of it by now, that doesn’t mean they know what it is. There’s a lot of conflicting information out there and it can be confusing.

After all, if everything you know about fibromyalgia comes from what you see on TV, you might believe I should be out rowing a canoe, gardening, or opening my own bakery and sweets shop. But, instead, you see me not feeling well and not participating in activities that are too taxing or stressful.

To clarify my response, I’m providing it in this written format. It’s my way of making sure I don’t leave out anything important.

Here’s what you need to know…

Health conditions in general, are classified as either diseases or syndromes. Diseases have a specific, definable, biological cause and have a specific set of symptoms. Health conditions that have no definable biological cause and exhibit a variety of symptoms are categorized as syndromes.

Fibromyalgia, therefore, is categorized as a syndrome as are multiple sclerosis, rheumatoid arthritis, migraines, and hundreds of other chronic health challenges. Fibromyalgia likely affects about 10 million Americans (mostly women) and the numbers globally continue to rise.

Now that I’ve covered some fundamentals, here are five more things that I think are important for you to know about fibromyalgia as well as about how fibromyalgia affects me.

#1 – Fibromyalgia is actually a systemic health concern. That means multiple systems of the body are compromised and may experience dysfunction. Many of us exhibit symptoms related to the musculoskeletal, nervous, respiratory, digestive, cardiovascular, immune, urinary, endocrine systems and more.

We’re all different. Some fibrofolk experience symptoms that relate to more than one system (or systems) than others. For example, some may experience frequent digestive dysfunction issues and rarely experience cardiovascular issues, etc. This varies widely.

The most dominant symptoms that we do share, however, are:

Chronic widespread body pain that varies in type and intensity day by day (muscles, joints, headaches/migraines, etc.)

Fatigue (this doesn’t mean simply tired – it means knocked down, dragged out, run-over-by-a-truck exhausted feeling that lasts for days, weeks, or much longer)

Sleep disturbances (difficulties in falling asleep or staying asleep – also, not feeling rested even after sleep)

Concentration, memory, and cognitive dysfunction issues (grasping for words, forgetfulness, difficulty in completing tasks, etc.). This is oftentimes referred to as fibrofog.

There’s a plethora of other symptoms, too. Digestive issues are very common as are anxiety and mood issues, balance and coordination challenges, weight management issues, whole body stiffness, PMS, inability to regulate body temperature and more.

While there are far too many symptoms to list here, the top four listed above are the biggies. Mine vary from day to day and while sometimes I feel some more than others, they’re all usually lurking under the surface.

I’d like to say a quick word, here, about depression. As you can imagine, dealing with chronic and relentless pain (and more) leaves its mark. It can leave a person feeling frustrated at best and potentially depressed at worst. Depression can especially develop for those who feel overwhelmed, unsupported, and hopeless about their health circumstances.

Therefore (non-clinical) depression can result from all of the factors listed above. It’s not the cause of the factors listed above. This distinction matters for reasons of establishing a diagnosis, a future prognosis, and potential treatment(s) for existing depression.

#2 – No, I didn’t “do” anything to cause fibromyalgia. There are multiple reasons that fibromyalgia can develop and it’s never just one thing. It takes a combination of factors and some of the most likely include:

A compromised digestive system* (contributed to by food sensitivities, stress, processed foods, diets and more),

A family history of immune system dysfunction and/or allergies.

Infection(s).

A traumatic physical event or injury (includes surgeries).

A traumatic stressful/emotional event.

Vitamin/nutrient deficiencies (*can be contributed to by a compromised digestive system).

Environmental exposures to toxins (both internal and external).

Multiple chronic infections leading to repeated use of antibiotics, steroids, or corticosteroids or non-steroidal anti-inflammatory medications.

Dental issues.

Also, any number of the above factors can lead to:

Whole body inflammation.

Chronic yeast and candida issues.

Compromised adrenal, thyroid, and hormone regulation.

These things set the stage for dysfunctions in multiple systems of the body. That’s why there’s such a wide variety of symptoms.

#3 – It’s important to understand that fibromyalgia and my symptoms are unpredictable. I’d love to “know” how I’ll feel tomorrow or even next week, but I simply don’t. Sometimes I can do something relatively minor (like fixing dinner for my family) and feel awful afterward. Other times, I can participate in something major and feel fine.

But, here’s the important part. If I can’t predict my own reactions to foods, places, events, circumstances, etc. – I certainly don’t expect you to.

I appreciate your concern when you ask if I “should” do this or that, but it’s my choice. I get to decide what I will or won’t choose to do. And, I’ll deal with the consequences of my choices. Additionally, I don’t expect you to know what to do, what to say, or even how to help me. It’s my choice and responsibility when (or if) to ask for help, and to share how I’d like to be helped.

#4 – In a nutshell, it’s important to grasp that having fibromyalgia makes me hyper-sensitive. Things that don’t pinch, hurt, or even annoy most people might drive me crazy. A heavy necklace or a large purse can feel like I’ve got an anvil pulling on my neck and shoulders. A simple touch or even an embrace can leave me feeling as if I’d been squeezed in a vise.

Sounds, lights, smells, tastes, and touches can be unusually amplified. Please respect (and withhold judgment) when I express that something may be too loud, too bright, to stinky, too spicy, or too painful.

I’m not trying to be difficult.

I’m simply trying to share my feelings and experiences.

And, along with being hyper-sensitive, there are some things I can’t control. While I agree it may look funny, it’s not humorous to me when I startle easily, jump at loud noises, or shriek when unexpectedly alarmed. It’s as simple as a reflex and I can’t change that.

Avalonia profile image
Avalonia in reply toNelly1

This is absolutely fantastic, can I borrow it as an explanation to my boss and my friends. Really illustrates how I feel for quite a lot of the time

Cotswolds25121 profile image
Cotswolds25121 in reply toNelly1

Wonderful piece of writing thank you. X

Nelly1 profile image
Nelly1

part 2:

It’s important to note that due to this hyper-aware state, stress is also amplified. Therefore, avoiding stress and dealing with the stress I can’t avoid has become my priority. For me, stress isn’t a simple fact of life to accept. Its negative effects are far-reaching and potentially long-lasting.

It is, therefore, an important health mission for me to participate in relaxation activities and care for my body physically, emotionally, and spiritually.

#5 – I appreciate your thoughtful suggestions for how to manage my health challenges, but keep in mind that above all, I’m doing the best I can.

Your helpful advice will be taken into consideration. If I apply your suggestion to my current protocol of treatments, I’ll do it because I feel it could benefit my healing process. If I don’t take your suggestion, it might be for any number of reasons. I may have already tried it, I may have researched or read something to the contrary, I may not have the resources to put it into practice, or I may feel it would conflict with something else I’m already doing.

While I may or may not have the time or energy to go into all this detail with you, please know that I value your concern. If there’s anything that I’ve learned, I know that there’s no single pill, practice, or program that will “fix” fibromyalgia. If there were, I’d already be taking it, doing it, or be devoted to learning it.

Which is exactly what I’m doing now.

I’m learning as I go.

One of the hardest lessons I’ve had to learn is how to express myself. Although it’s difficult, here are a few thoughts on that topic:

Please don’t ….

Tell me that you know how I feel. Even if you have fibromyalgia and/or any other health challenge, we’re all different and experience our conditions differently.

Tell me how I should feel. That’s up to me.

Tell me that so-and-so drank this “magic juice” and got better. There are as many treatments that don’t work as ones that do. I’m on the journey to discover this process on my own.

Compare me to siblings, friends, colleagues, who don’t have health challenges or even those who do. As I’ve stated, I’m on my own path to wellness.

Please do ….

Tell me that you’re thinking of me. Even if I’m not terribly responsive or talkative it’s wonderful to know that you’re supportive of me and of my health.

Send me books, magazines, cards, emails, notes, etc. that express that you’re there. Chronic illness can be SO isolating and every kind word from you matters to me.

Ask if there’s anything specific that I need. Even if I say “no” 50 times out of 51, that one time that I really need something may mean the world to me.

Continue to search for helpful treatments, protocols, nutrients, supplements, and practices. Just because I don’t always implement your suggestions doesn’t mean I don’t appreciate the help. I’m always open to and encouraged by current news and information.

In summary:

Remember that my body may bruise like a tender peach, but my will is strong as iron.

What I’m really trying to say is that inside, I’m still the same me.

I’m just trying to find my way as best I can.

I’d love it if you’d come along with me on this unpredictable journey.

Not behind me pushing,

Not in front of me pulling,

But beside me – guiding, encouraging, nurturing and supporting

Are you with me?

Tisme72 profile image
Tisme72 in reply toNelly1

What an amazing piece of work! That’s exactly what I needed, most of it confirms the results of my own research but puts it into easy to read and understand words. Thank you for your efforts to compile the work, I shall (with your permission) print it out for all those I need to see it. It does give me some hope and compiles all of the things I need to get them to understand all in one document. Even if I just read it to them (which actually might be a better idea, so I know that they’ve heard it) they might just take it in that I’m not what they assume me to be.

Chilliconcarne profile image
Chilliconcarne in reply toNelly1

Thank you so much so your post It was such a help.

DJK99 profile image
DJK99 in reply toNelly1

Thank You. I needed that. Wishing you well. D

2thebeach profile image
2thebeach in reply toNelly1

That's an excellent article, it explains things so well. Thanks very much for sharing it.

Chunky6 profile image
Chunky6 in reply toNelly1

this is amazing, reading through is exactly how I feel. It’s good to read it even for myself so I know I’m not going mad!

Strollingrose profile image
Strollingrose in reply toNelly1

Thank You so much. You have put into words how I feel but would never have been able to articulate how my life is so affected by Fibromyalgia.

Krissy39 profile image
Krissy39 in reply toNelly1

Definitely with you.mI’ve had fibro for decades. initially dismissed as ‘nerves’ so went through hell then I was diagnosed with osteoporosis in my early 40’s. After that I got listened too regarding, pain (diagnosed as fibromyalgia), then coeliac, migraine and so on. I’m 76 in a few days had 2 compression fractures in my spine, T6 and T7. Now having to put up with symptoms of spinal compression plus fibromyalgia so life is a real challenge. Doctors just really don’t know how to help really.

gemimafibro profile image
gemimafibro

Hello! Firstly, a massive well done, for coming off the pain killers. That is no easy feat, especially when you feel so dreadful without them.

Secondly, I'm sorry that you're experiencing a lack of sympathy from your loved one(s). Not even sympathy per se, just a lack of understanding. I think until you personally go through something with your health, you just don't get it. We can tell them until we are blue in the face how we feel but they can't fully comprehend it because they've not experienced it.

I tried (still try) to give my loved ones a little grace, because I haven't always been this way and I'm not the same person I used to be when I was fit and healthy. I believe that there is a sense of grief people need to go through, both the physically affected person, and those around them, for the person that once was. We've been forever changed by this condition. We'll never be the people we were before but that is okay. We're still worthy of being loved and cared about.

I'm 31 now, my symptoms started at 23. I was adamant that I'd die before I reached 30, as I was completely bedridden for 2 years. That experience showed me life was too short to hold on to people that didn't accept me for who I was now and made me feel shame for my condition. I've lost a few people, but the ones that matter, don't care that I'm different now.

I'm sure you have already sat down and calmly communicated with your family that their snide comments are both hurtful and unhelpful, but on the off chance you haven't, perhaps give that a go. It sounds simple, but it can be a difficult conversation to have. Your life still matters. Your happiness still matters.

I hope with all my heart that you are able to communicate with your family and that they can begin to understand who you are now.

(P.S. Hi Ren is an incredible work of art)

Gemima ❤️

Tisme72 profile image
Tisme72

 Brigga  gemimafibro thank you both for your kind replies.

Brigga, yes it was difficult to come off them but I felt better by the day, gradually becoming more ‘myself’, I had become a walking zombie and the pain was never really consistently better. If I hadn’t have stopped when I did I wouldn’t have been here now 🥲

Gemima - you’re so young to be this way 🥲, your words are true people who have no time for you, they absolutely don’t deserve your attention! As regards my family I have given them an ultimatum, either they try to understand me and the condition or I shall isolate myself from them until they accept who and what is now me. It’s easy for me to do this now because we have a holiday home that I can go to and do my own thing until they decide to come to me and talk about it. If they can’t be bothered then I shall make my own life along with people who do understand and are understanding of it. Yes Ren is an amazing artist, definitely worth digging in deeper - also his other work with Chinchilla and The big push; he’s an amazing artist and songwriter!

Al10 profile image
Al10

People being unsupportive or even hurtful really doesn't help us. If it's work colleagues or friends that is bad enough but we can maybe make changes? Or at least have time out? but family is a problem. What to do? If it's family we like to be with, Eek!

You could ask them can they accept you as you are? Can they accept your condition is irritating without making it about you? You are not trying etc? You are not your condition!! If they can't and some folks can't, you have to decide what you want to do. I don't think expecting folks to change coz you say they have to, will help them change.

Some people just find poorly folks an irritation or disappointment. Even I do sometimes! I really think all of us do have to accept people how they are, no judgement. Maybe if you talked they might be able to say, it's not you they get mad with, just it's hard missing the you you used to be? They miss the things you used to do together. There is a lot of grief involved with fibro as it eats away at our lives. It's easy to forget how much it also affects others and that they have a right to their feelings about it.

You know that being around toxic people will contribute to your pain and discomfort. But do you know if spending less time with such people will help, or would you suffer in other ways?

I put up with an awful lot before the fates decided to intervene. And then...being on my own wasn't the big deal I thought it might be. I wasn't afraid of being alone like everyone warned. In fact, I liked having the space to be more me. It wasn't a cure but I did feel better in many ways. And I didn't have to be blaming or resentful of anyone, because there was just me.

I learned that I like my own company and I need my own space. I can't put on a show 24/7 and living alone meant I no longer felt compelled to. I realised that too often I had been masking how bad I felt because you can't be sick and sorry so much without upsetting others.

Life will always be a series of compromises and it's about deciding which ones are worth it and which are deal breakers.

Gulfstream_Maggie profile image
Gulfstream_Maggie

I have this saved on my phone for any future time it’s needed. I’m heartily sick of having to explain things time and time again.

The fibromyalgia letter (part 1)

Can be found on the following link:

haltonfibromyalgiasupportgr...

Hello Family, Friends, and Anyone Wishing to Know Me!

How do I explain this to you my family and friends? This is very difficult to do as my illness is "unseen." So allow me to begin by thanking you for taking the time out of your day to spend some time with me and get to know me better. A person's time is their most valuable asset and yours is appreciated

{{{Fibromyalgia is a chronic condition characterized by widespread pain in your muscles, ligaments and tendons, as well as fatigue and multiple tender points - places on your body where slight pressure causes pain. Myofascial pain syndrome is a chronic form of muscle pain. The pain of Myofascial pain syndrome centers around sensitive points in your muscles called trigger points. The trigger points in your muscles can be painful when touched. And the pain can spread throughout the affected muscle.}}}

I want to talk to you about fibromyalgia (FM) and Chronic Myofascial Pain Syndrome (MPS). Many have never heard of these conditions and for those who have, many are misinformed. And because of this, judgments are made that may not be correct. So I ask you to keep an open mind as I try to explain who I am and how FM/MPS has assaulted not only my life but those whom I love as well.

I cannot show you a physically open wound to show how much pain I'm in. If I could you would take one look at that, tell me to sit right down, get me a pillow, offer me something to eat or drink and have that concerned and understanding look on your faces. However with Fibromyalgia, you will hear from many people that they would rather have a broken leg any day than suffer the kind of pain these disorders inflict. To me, a broken leg is even a poor example to compare suffering to these disorders and an insult to those of us with those disorders.

You see, I suffer from a disease that you cannot see; a disease that there is no cure for and that keeps the medical community baffled at how to treat and battle this demon, who's attacks are relentless. My pain works silently, stealing my joy and replacing it with tears. On the outside we look alike you and I; you wont see my scars as you would a person who, say, had suffered a car accident. You won't see my pain in the way you would a person undergoing chemo for cancer; however, my pain is just as real and just as debilitating. And in many ways my pain may be more destructive because people can't see it and do not understand...

Gulfstream_Maggie profile image
Gulfstream_Maggie

Fibromyalgia letter (part 2)

You must see with your ears and your heart what your eyes cannot see. You must listen carefully to what I am telling you. What I describe to you may not make much sense to you and may be difficult for you to understand. Sometimes it may seem to you to be a different universe that I discuss. Know that it probably is. You don't have to fully understand my universe and you cannot possibly. However hear my pain, listen for red flags always of any danger signals where you may need to help with added assistance. I like to call it "sending in the troops." Anytime I do not seem in touch with reality.

Please don't get angry at my seemingly lack of interest in doing things; I punish myself enough I assure you. My tears are shed many times when no one is around. My embarrassment is covered by a joke or laughter, but inside I want to die. You will hear many things from me that to you seem as easily resolvable. You may wonder why I make the same "wrong" decisions over and over again. Why haven't I learned by this time? Why can't I see the senselessness of my behavior? I may seem to be getting my life together and them bottom out all over again.

Please understand the difference between "happy" and "healthy". When you've got the flu you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time, in fact I work hard at not being miserable. So if you're talking to me and I sound happy, it means I'm happy. That's all. I may be tired. I may be in pain. I may be sicker than ever. Please, don't say, "Oh, you're sounding better!" I am not sounding better, I am sounding happy.

What is happening here? Am I lazy, stupid, etc? Nope. My physical brain and body is very different than yours. I experience life different than the way you do. I feel different than you do. Most of my "friends" are gone; even members of my own family have abandoned me. I have been accused of "playing games" for another's sympathy. I have been called unreliable because I am forced to cancel plans I made at the last minute because of the burning and pain in my legs or arms and shoulders. The pain can be so intense that I cannot put my clothes on and I am left in my tears as I miss out on yet another activity I used to love and once participated in with enthusiasm. Do I experience mood swings? If I am hurting I may be angry, sad, depressed, or any of the hundred moods in the world. I'll never know what mood I will wake up with? I may treat you cruelly and say horrible things to you; I may ignore you completely, or cry on your shoulder unstopping when I'm in Fibro Flair. You may wonder what you said or did that made me this way. Well you did nothing it's the Fibromyalgia and all its underlining factors causing this.

{{{While the most predominant symptoms of fibromyalgia include widespread pain and persistent fatigue, the resulting cognitive impairment of this condition may be its most maddening. Commonly referred to as fibro fog, this symptom is a conglomeration of cognitive challenges. Fibro fog is understood to be a physical symptom of fibromyalgia, not a psychological one. Just as no two individuals experience fibromyalgia in the same way, fibro fog also has a varying range of indications, including: Mental confusion, Fuzzy thinking, Short-term memory loss, Inability to concentrate or pay attention, and Language lapses}}}

This is why I feel like a child at times. Just the other day I put the egg's I bought at the store in the pantry, on the shelf, instead of in the refrigerator. When I talk to people, many times I lose my train of thought in mid sentence or forget the simplest word needed to explain or describe something. Please try to understand how it feels to have another go behind me in my home to make sure the stove is off after I cook an occasional meal. Please try to understand how it feels to "lose" the keys, only to find them in the freezer. As I try to maintain my dignity the Demon assaults me at every turn.

I have a physical illness and it isn't my fault and I didn't ask for it I don't want it and I don't deserve it.

{{{Occurring at the deepest level of the sleep cycle, individuals with fibromyalgia typically lack sufficient restorative sleep. We know that at the deeper levels of sleep, called delta wave sleep, a person's mind conducts internal housekeeping. During delta wave sleep, newly acquired information is assimilated and integrated into the brain. The inability to get sufficient delta wave sleep impairs the ability to recall information and operate at a normal level of mental efficiency.}}}

Sleep, when I do get some, it is restless and I wake often because of the pain the sheets have on my legs or because I twitch uncontrollably. I walk through many of my days in a daze with the Fibro-fog laughing at me as I stumble and grasp for clarity.

Just because I can do a thing one day, that doesn't mean I will be able to do the same thing the next day or next week. I may be able to take that walk after dinner on a warm July evening; the next day or even the in the next hour I may not be able to walk to the fridge to get a cold drink because my muscles have begun to cramp and lock up or spasm uncontrollably. There are those who say "but you did that yesterday!" "What is your problem today?" The hurt I experience at those words scars me so deeply that I have let my family and friends down again; and still they don't understand.

On a brighter side I want you to know that I still have my sense of humor. If you take the time to spend with me you will see that. I love to tell that joke to make another's face light up and smile at my wit. I am fun to be with if you will spend the time with me on my own playing field; is this too much to ask? I want nothing more than to be a part of your life. I have found that I can be a strong friend in many ways. I am your friend, your supporter and many times I will be the one to do the research for your latest project; many times I will be your biggest fan and the world will know how proud I am at your accomplishments and how honored I am to have you in my life.

All I ask is that you become educated about fibromyalgia. I am someone in your life that suffers from fibromyalgia. You may think you know everything there is to know about it, but there is more information out there than you think. It is more complicated then you think, and it is more life changing then you think.

{{{Lend a helping hand. If you want to be helpful to someone with fibromyalgia, just ask what you can do. Be flexible with invitations and plans that you have made. Understand that sometimes the pain of fibromyalgia is overwhelming.

Smilesalot profile image
Smilesalot in reply toGulfstream_Maggie

Wonderful piece Gulfstream_ Maggie🤗And so informative.

Had me in tears in places but I needed it🤗🤗🤗🤗🤗😍 hugs and love sweetie Dawn 🤗

Gulfstream_Maggie profile image
Gulfstream_Maggie

Fibromyalgia letter (part 3)

Be active. Accompany them to a doctor's appointment and take an active interest in their treatment. You can take notes at the doctor's office and then review your notes together at home. Don't take things personally. Some people with fibromyalgia suffer from sudden mood changes. Try not to take these mood swings personally as they are part of the syndrome.}}}

So you see, you and I are not that much different. I too have hopes, dreams, goals and this demon. Do you have an unseen demon that assaults you and no one else can see? Have you had to fight a fight that crushes you and brings you to your knees? I will be by your side, win or lose, I promise you that; I will be there in ways that I can. I will give all I can as I can, I promise you that. But I have to do this thing my way. Please understand that I am in such a fight myself and I know that I have little hope of a cure or effective treatments, at least right now.

Thank you for spending your time with me today. I hope we can work through this thing, you and me. Please understand that I am just like you.

So I Need You To Please Understand Me.

Smilesalot profile image
Smilesalot in reply toGulfstream_Maggie

I will be here whenever you need me to be and I think you will have many more people thanking and loving you. Hugs sweetie Dawn 🤗🤗🤗🤗🤗😘😍,Sorry your words have bowled me over so I need to read ur precious words again🤗🤗🤗🤗🤗🙏😊

Judithdalston profile image
Judithdalston

You may find Dan Neuffer ‘s various website/ podcasts etc of interest…. He has helped lots of fibro etc people, and their families, not my style. I only do painkillers at bedtime as need to take off ‘something’ ( not 100% sure what: a bit of pain, feel of rough sheets, brain activity, restless legs…) before I go to bed… though I don’t get to sleep to 2 am ish I notice if I forget to take them I am wondering at 4-6 am why I haven’t been asleep. A year ago I started swimming, go 5x a week, as the only exercise, including walking or household chores, that I can do…must be good for the body and quite good for the brain!

Nipper11 profile image
Nipper11

Just pat yourself on the back. Your brave story is so like many on here. I share your frustrations and concerns. Linked to your family and perhaps friends as well. The only advice I can say is. Believing in yourself is the most important thing . You feel and live this illness very minutes of every day . Don't lose yourself in others who make remarks that are linked to your wellbeing its there weakness not yours. You are living with something that is at times so hard to control. Set yourself a plan that builds you and not fibromyalgia. Lose weight ,change your lifestyle. Stretching exercises will ease your pain. Rub your muscles in warm oils. This will help your muscles to relax more .

Research self-help vitamins that will help you with pain. Use a tens machine, which will also help with pain.

Change your mindsets to be positive about you as a person. Fibromyalgia makes you someone you're not. Push your GP to put you forward to healthy minds

teams they can help you and advise how to deal with negative comments from famly members.

Ask your GP for help in losing weight they can recommend a dietitian to help you look at all options of the food choices.

Moving your body everyday is key to keep muscles strong.

I had a journey like you and stopped. Apologizing for something I couldn't stop.

I had to find myself and get control of what this illness had done to me. I, too, took painkillers over the years, and in the end they stop working.

My pain management is achieved, but slowly and it works for me. Tramadol is a last resort for me to take when pain come overwhelming pressure on my muscles. My mindset is to be the person I use to be and not the victim of fibromyalgia. There are many brave members on this site who understand you and therefore go forward in your achievements because you will benefit from them. My mobility is affected by Fibromyalgia and Osteoarthritis in my knees which means I now walk with sticks I push myself like others on this site everyday to keep my life as normal as possible it doesn't matter how long it takes .Little steps where you can.

Good luck. Big hugs and take care . Xx

CheetieCat profile image
CheetieCat

Hi, there's a few more ways to describe how fibromyalgia can affect you on this recent thread

healthunlocked.com/fibromya...

Jenonnet profile image
Jenonnet

Hi, I have the same problem. Because you look fine in yourself and have no physical symptoms, people can't seem to grasp how difficult everyday life is for you. They just don't understand the pain and debilitating tiredness you have constantly. I don't really think there's anything we can do about that, they'll never understand unless they get it themselves. It's just one of those "walk a mile in my shoes" things.People are like that, if they can't see it, they don't think it exists. 🙄 Good luck with trying to convince them, I've never managed it!

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