What's it like to suffer with Fibromyalgia

Bones, joints and muscles
1

Hello Everyone

I was diagnosed with Fibromyalgia by a Rheumatologist earlier this week, after 2 years of extensive testing and research into my current list of symptoms. I was hoping some other Fibromyalgia sufferers can give me an insight into what to expect, and whether my current symptoms are indicative of Fibromyalgia.

My current symptoms consist of the following:

- Generalised muscle and joint pain that occurs randomly, or can be           bought on by physical activity

- IBS type symptoms, which include severe abdominal bloating, burping     and flatulence (bowel movements are normal and regular though).

- Sensitivities / intolerances to numerous foods.

- Nausea and sickness (no vomiting).

- Dizziness, feeling unsteady and like I'm going to pass out / faint.

- Heart palpitations.

- Sensitivities to light and temperature.

- General weakness that gets so bad that it feels hard to hold my head       up, as an example.

- Tiredness and fatigue that can have me dropping off to sleep at any         time.

- Forgetfulness and struggle to converse / understand others.

- Anxiety and feeling panicky at times.

- Generally feeling under the weather.

As I said I've had extensive testing done on me. I have had loads of blood tests, stool tests, urine tests, head MRI, chest and back X-Rays, abdominal ultrasound, colonoscopy, endoscopy, 20 minutes ECG, and I'm sure others that I have forgot.

I do get odd good days where I can actually feel quite normal, but these don't happen very often. I wouldn't say I experience all the symptoms, all the time, some days I may feel quite dizzy and faint, but no muscle or joint pain. Another day my IBS symptoms can be quite pronounced, along with the dizziness and feeling faint, but don't feel anxious or panicky. Some days I can talk and understand fine, but may have awful muscle and joint pain, then another day visa-versa. What I'm trying to say are my symptoms are very random and can affect me at any time, and in different combinations.

The last 2 years have ended up being totally life changing for myself and my family and I would be really grateful if any Fibromayalgia sufferers could give me some info on this illness, and confirm that a lot, if not all the symptoms I get are related to Fibromyalgia. Also, any advice or help on how to live with this and information on what help that may be available to me would be very useful.

Many thanks in advance!

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Hi Paul. Yes your varied symptoms are very familiar to all of us who have Fibromyalgia. Glad that you have finally gotten a diagnosis. I remember in the beginning going to the doctor with an extensive list of my symptoms and I can't imagine what he must have thought. Many FM patients are often labeled as a hypochondriac. I was finally sent to a specialist, a Rheumatologist and was then diagnosed. That was over 30 years ago Paul. It is manageable. But you must recognise your limitations. Stress is a real instigator of symptoms. I myself do not take meds. Others here could give you insight as to that. I manage the condition in a more holistic way with diet such as no Gluten, eating as healthy as possible and a few supplements. Do your research Paul. You will find what works best for you. Right now it seems like your body is crying out for Rest. Most FM people have endured a great deal of stress and even trauma in their lives. It took quite awhile to get to this point so one needs to be reasonable in understanding that it will take sometime to recover sufficiently. Be patient and a bit kinder to yourself Paul. Emotional health is also crucial. Keeping a journal can help get your frustrations, fears and worries into words. Those feelings need to come out to be resolved. One day at a time. Never despair Paul. You are never alone in your struggles. Warmest Regards. Maggie 

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Hi Magpie

Thank you so much for your insight, information and kind words, I do appreciate your time in clarifying the points I mentioned. I'm astonised that you seem to be coping so well with having FM for so long, well done indeed, and I hope to take inspiration from you.

I feel you are completely correct when you mention that FM people have gone through lots of stress and trauma in our lives. I know that my life has been very traumatic and stressful from a very early age, my childhood was especially hard with parents who were abusive, and on occasions violent towards each other. I still have images that live with me like physical scars, and no matter how much counselling I've had, never ease these thoughts and feelings. That then sort of pathed a very stressful, worrying and messed up life for me.

I will do my research and get some help / advice / information to get a better understanding of FM. The Rheumatologist has referred me to a Physiotherapist for some graded exercise therapy, as well as getting me some Psychological help. One thing I find hardest is the intolerances / sensitivities I have developed with food and drink. I really am struggling to eat a varied, healthy diet, and have more than enough fingers and toes on me to count all the foods I can tolerate, and even then I still develop digestive problems on almost a daily basis. I can't eat fruit, most vegetables, bread and breaded products, dairy, and can only drink water. I've had the help of a dietician who put me on a low FODMAP diet, but this didn't really help. I've tried to introduce other foods, but feel like I have developed a food anxiety, mainly due to not wanting to feel sick and be in pain from trying new foods.

I still find it hard to believe that only two and a half years ago, I was able to work in a physically demanding job, able to eat anything, drink anything, go anywhere and do anything. Now, I'm pretty much housebound, I even have to get my partner to drive me to the doctors which is only 200 metres away from me, for fear that the walk will bring on pain. I've never felt so unfit, coupled with physical and emotional exhaustion. I'm hoping that I can get to a point where I am able to enjoy a bit of a life again, and that is what I am going to fight towards.

Thank you again for your help and advice. I do wish you all the best for the future. Onward and upward as they say!!

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I am so sorry to hear about your upbringing! i hope you recognise that it was their messed up issues Paul and that it had Nothing to do with you. You were just on hand for them to dump their anger and negative energy on. So many went through this kind of upbringing. My husband included. We can only stuff this kind of trauma down for so long Paul. Sooner or later all those repressed emotions and feelings of injustice will become manifest in our overall health. The body can just take so much. This is especially hard for men since they are not taught to express their emotions in a productive way. The 'suck it up' philosophy prevails, sadly! They usually express pent up feelings only with anger. So I encourage you to not give up on getting some therapy to deal with the pain and disappointments of the past. Our emotions affect us physically. Never underestimate the powerful effect that hurt, frustrations, painful flashbacks, feelings of abandonment or low self worth can have on our health. For now Paul, you need to take the necessary time it takes to recover. You have someone in your life who cares for you and allow her to give you the support you need. You would do the same for her if the tables were turned. The best advice I can give is 'DON'T live in Denial!'. Acceptance of your FM is a big part of recovery and in coping with this condition. This is a chronic condition and you WILL have better days eventually. Many people the world over, are living with a chronic illness. They learn how to cope and so will you Paul. You are not alone in dealing with this. Continue to be proactive in finding ways to manage it and Never despair. Rome was not built in a day! Warmest Regards. Maggie 

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Some really interesting and enlightening thoughts there Magpie, thank you. I especially like your comments about the manly attitude of 'suck it up'. I have to admit I was very much that sort of person, and I seriously believe that the intense physical stress of my last job, and then the trauma of being in extreme abdominal pain after being prescribed Naproxen for back pain, that actually ended up being stomach issues, led to me developing FM.

I have learnt to take a step back in recent months, trying to take a more relaxed attitude to life, but I do have a problem accepting FM is now going to be a part of my life for the foreseeable future. Even though I've had extensive testing done on me, I still wonder if something has been missed. I'm sure time will help me to accept my diagnosis, and come to terms with my FM, it is still early days for me I guess! I have already developed some coping mechanisms that help me a great deal, so that is a start in the right direction. All I need to do now is do my research, and get a better understanding of FM, which in turn should help me accept the fact that I am a Fibromyalgia sufferer.

Thank you so much for taking the time to explain, and advise me on the points that made me feel a bit indecisive about my diagnosis.

Best regards and good luck for the future.

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Paul I sympathize with you I was just told this past week I have fibromyalgia. I have the same exact symptoms as you. And they just seem to be getting worse! The rheumatologist that diagnose me told me she wants to wait until I have a sleep test which is now scheduled for six weeks ahead. And she rescheduled me for two months. And put me on no medicine or anything!!! I am extremely frustrated. I am anxious to see what will happen. I already have depression and this is just making it worse because I feel terrible! So just so you know you're not alone I wish you good luck.

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Hi Marcy

Nice to hear from you and so sorry to hear about your diagnosis. From what I gather the early days of being diagnosed with Fibromyalgia are the hardest, until we get to learn our own personal coping techniques, and limitations. I would say that unlike you, I'm fortunate that I think I have reached the peak of my suffering, put it this way, I can't imagine it getting any worse, so I really do sympathise with you. I've chosen not to take meds, I've tried various antidepressants in the past and I don't like taking them. As for pain relief, my scary, painful experience of taking Naproxen a couple years ago has totally put me off taking pain relief. At a push I might have a couple of paracetamol once in a blue moon, but I have to be really bad to be pushed to this. I have not been offered any sort of sleep test, I never thought I actually had a problem with sleep until I bought one of those smart watches that acts as a heart rate monitor, sleep monitor, etc. I've been using it for a month now and was amazed to see how restless I was during the night. I don't know how accurate these watches are, but I tested the heart rate monitor against a piece of medical standard equipment and the results were very similar. The restlessness in my sleep pattern is causing me to be quite some time away from getting the recommended sleep I should get. I've also noticed my heart rate is quite variable to, considering most of the time I'm led up on the sofa not able to do much. I've had a 20 minute ECG, used an event monitor during palpitation episodes, had my heart listened to on numerous occasions and chest X-Ray done and I'm told my ticker is fine, but the variations in my heart rate does make me wonder if there is a problem with it, or whether its my body trying to cope with the FM. I do get chest pains now and again, and shortness of breath which has been put down to extreme bloating in my digestive system, which is in fact very plausable, but there is always that element of doubt in the back of my mind.

Thanks for getting in touch Marcy, and I do hope you get the answers and help you need to try and battle your FM. All the best for the future and take care.

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Regarding sleep Paul, please try to limit your caffeine intake. I have found that any coffee I drink after 1 pm will affect my sleep. I will toss and turn and awaken at odd hours. Chocolate can do the same thing. Just a tip. Regards. Maggie 

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Thank you for the advice Magpie. However, I only drink decaf coffee now, and only have 2 cups a day, I found that caffeinated drinks really didn't agree with me. I do eat a bit of chocolate, but only very small amounts, as too much will again upset my stomach. My digestive problems and food intolerances are the worst symptom for me. I actually lost 32kgs in weight since becomming ill 2 years ago, due to digestive issues, and went down to 9 1/2 stone at one point. I was declared underweight by the doctor, who then put me on 2 bottles of Fortijuce a day. Since then my weight increased to just under 11 stone, but now the weight has gone back on, my doctor took me off Fortijuce and already I have lost 4lbs in weight in the space of a couple of months. The almost constant bloating, burping and flatulence leaves me feeling really nauseous, and I think contributes to a lot of pain, shortness of breath and dizziness, faint feelings I get. Most days I look pregnant, and my adbomen is so hard because I'm so bloated. I've been having a really bad day today, this morning I felt like I was going to pass out and had moments where I felt it hard to draw breath, I'm feeling a bit better now, but still feel groggy and have this sense of just feeling out of it, if that makes sense! I don't like days like this. Hopefully it'll pass soon.

Thanks again for the tips though, if you have anymore, please do share them with me, I'm willing to try anything just to make my FM a bit easier to deal with!

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Hi Paul. Oh my goodness you sound like you have Celiac disease. Or Gluten intolerance. I am a Celiac and those are the exact symptoms I had before the doctor found the cause. I would suggest you get off the wheat asap for awhile and see how you feel. There is gluten in so many things. Just give it a try Paul. If you see a difference then you could very likely be Gluten intolerant. Read labels. They make so many alternative foods now that it is so much easier to go Gluten free. I suffered for about 30 years not knowing. As soon as I went Gluten free, all those horrible symptoms stopped. I only get these symptom if I ingest Gluten by accident. 

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Thanks for the reply Magpie, however I have been gluten and lactose free for the past year at least, and even though it has helped a bit, its not relieved them totally. If I do have gluten or lactose though, it does make me feel 10 times worse than I do right now. I think I need to go through the ingredients lists for the pre-made foods I eat, however I don't eat much of these, my diet, albeit very limited, consists of mainly fresh foods. Also, with the foods I eat I cannot find a pattern. One day I might have a meal that I think makes me ill that day and the day after, but the next week I have the same meal, and I feel fine. Yesterday for example, I woke up fine, and before I even had my breakfast, I started to feel very weird, like a cold feeling around the top have of my body, followed by dizziness, lightheadedness and feeling like I was going to pass out, mixed with a slight feeling of struggling to breathe. These feeling passed after half an hour or so, but the rest of the day I just didn't feel right, sort of 'out of it' if that makes sense. My digestive problems are so random and make no sense.

I have been tested for Celiac disease twice now, once when all my problems started and one more time about 5 months ago, and both were negative for Celiac. I've seen a dietician about this, who then put me on a FODMAP diet, which I have pretty much stuck too, but even she was mystified as to why the digestive symptoms would totally go away.

I'm so lost and confused, I really don't know what to do now. I wake up dreading the day ahead, wondering if I'm going to have a good one, or whether I'll be bad again, but knowing I'll usually be bad, and I know a lot of it is down to the digestive issues, without them I'm sure I would have a much better life than I do at the moment.

I really appreciate your thoughts and ideas Magpie, and the fact that you are trying to help, thank you so much. I have done so much research and tried so many things that I really am running out of options now. I don't know what else to do!