New alarming symptoms

Posted by meryw @meryw, Apr 16 4:28pm

I have been diagnosed with Fibromyalgia for over 20 years now. My main symptoms were fatigue and minor pain in muscles.
Three years ago I began experiencing severe dizziness and syncope (fainting). No one can figure out why or ever connected it to my Fibromyalgia. In the last year, I have lost over 20% of my body weight (mostly muscle mass in my legs and arms) and for the last three months I’ve been experiencing extreme pain in all my muscles They have tested me for everything related to inflammatory and autoimmune diseases and even did a MRI of my brain. All of it came back negative.
Could this all be the Fibromyalgia? Has anyone else experienced these symptoms?
I would appreciate any and all advice, experience and opinions.
Thanks

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Profile picture for lindasq @lindasq

I have been diagnosed with fibromyalgia after having the flu in 1996. I continued with mild pain and fatigue that had a remitting and relapsing pattern, ut I was able to work full time as a nurse, In 3/2020 I had a mild case of covid, but the fibromyalgia seemed works then in 3/2022 I had bilateral PE, aortic embolism, mild R basal ganglion lacunar infarct now showing micro vascular disease in the brain,, organoaxial volvulus stomach, woth Hgb of 4,8, I had blood transfusions, iron transfusions, and surgical repair of the herniated stomach, but since have had post exertional malaise, much worse pain and weakness in legs and hands, unable to shower or cook without becoming short of breath and increased upper back pain, I have not found a doctor who has the time of interest yet in helping me try and find out why,, but the reading that I have been doing reactivation of varicella fits, You don’t have to have rash for this to be happening, I also have a history of EBV, and possibly CMV. We know that covid can reactivate viruses, I have long thought that fibromyalgia and chronic fatigue syndrome were symptoms of some form of viral reactivation, You can google and find articles from the NIH and other reputable studies to being into your doctor and see what they think, I wish you luck, There has been too little research into these syndromes including CIRS which all seem to be medical jargon for pain, fatigue, foggy thinking, and over all decreased ability to function. Have you found any diet or exercise routine thst has helped you?

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I stretch using YT in the house and also signed up for hot yoga. We have a heated pool in my community, so I walk in the shallow area and float around on a noodle using my upper body.
This is a BIG change for me. Jogging, Zumba and Pickle Ball were my sports. No can do, so I roll with it. It's a new beginning every morning when my feet hit the floor. Find you happiness.

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Profile picture for hraka13 @hraka13

There are foods that are inflammatory and foods that are anti inflammatory. One of the biggies to avoid is fried foods (a weakness) and ultra-processed.
There are many sites online that I’ve found helpful. Search for the words and see what comes up. Just remember there is no miracle cure for fibromyalgia. We treat it, deal with it, and sometimes it’s all we can do to handle it. Every person has a different level of pain or discomfort. Some people’s symptoms, like sleep, are worse or better than others. Get to know yours. See if you can see a pattern. Don’t be afraid to say, “I feel like crap today and I’m not going to do my grocery shopping today.” Don’t punish yourself if you fall off the healthy food or exercise band wagon. Reward yourself once in a while for even little accomplishments.
Good luck. It sounds like you have a plate full. Some of the symptoms may overlap and even exacerbate each other. Take on your issues one at a time. We didn’t get it all at once; we can’t treat it all at once.
Good luck 🥰

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This is all so true.

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Profile picture for jlbh @jlbh

I'm 53 yrs. Old, a recovering addict and have such severe (tears rolling down my face) pain, with anxiety, depression, it's gotten to the point where I'm not sleeping but maybe 0-3 hrs. Of interrupted sleep. I don't have a diagnosis yet. I've been researching and it all points to fibro. The e.r.s are a joke where I live and can't get an appt. With a PCP(primary care physician) for 3-4 months. It has become the most unbearable pain I've ever experienced on a night to night basis. Does anyone have any recommendations or ideas to get me help. I'm to the point of relapsing, I have worked to damn hard to go backwards. Desperate in wa. State

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I use ice packs to my thighs and just numb them. It helps short-term. I take Epsom salt baths and use mg gluconate and maleate at bedtime.
Just purchased Baxyl liquid (take daily) and Theraworx (topical foam) from Amazon as per recommendation by others in the chat. I give it a 30 day usage and evaluate. Stay strong and pray.

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Profile picture for vcarter20902 @vcarter20902

I'm so sorry to hear this Artemis. What a difficult situation. I feel for your boy and you as well. I don't know what his doctors say, but yeah, it sounds like rehabs aren't the answer.
I'm sure you've already seen neurologists, right?

Cannibis is legal here in Maine, but I don't know if it would help. Wish I could offer more. Narcotics Anonymous saved my life. It focuses on abstinence from all drugs.

I will say a prayer for you and your son, and hopefully relief will come soon.

Best,

Vicki

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Thank You! I just don’t want him to damage his heart further.

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Gosh, I am so sorry you're having these issues! Have they checked your vagus nerve?

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Profile picture for profcnrn @profcnrn

I use ice packs to my thighs and just numb them. It helps short-term. I take Epsom salt baths and use mg gluconate and maleate at bedtime.
Just purchased Baxyl liquid (take daily) and Theraworx (topical foam) from Amazon as per recommendation by others in the chat. I give it a 30 day usage and evaluate. Stay strong and pray.

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After 45 years of fibromyalgia I have tried every med the doctors could prescribe and was allergic or had bad reactions to them all except a very old medication first used when it was still called fibrocytis called Doxecycline 100mg 1Xdaily. It's an anti-biotic but with the low dose my rheumatologist prescribed it at least 10 years ago. That has made a remarkable difference in my life as well as Gloucosamine sulphate 750mg 3 X per day, a vitamin, which makes a great difference.. I forgot my pills when I went away for 3 weeks and the pain was so bad. It took 3 weeks to get back to normal . Tryu it but give it a chance to work.

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Profile picture for dbond4 @dbond4

I’m 43 and have been dealing with this for 11 years.
It’s been getting worse over the past two years
It’s always there but the FLARES are just intense
I haven’t seen a dr for it since I was diagnosed I took gabapentin but it stopped working. My rheumatologist (I only seen once) basically laughed. Said it was a trash can disease ,repeatedly pushed on my inner elbow (way after it was confirmed ). He seen how much it hurt. I also felt extremely disregarded so I never went back
It is starting to be too much muscle wasting feeling with so little strength in my arms and legs I can barely walk or hold a dinner plate in my flares that seem to be coming after I do ANYTHING I think that’s because they found 4 nodules in my right lung 1 regular and 3 ground glass. I have shortness of breath irregular heart rate I went in 2 days after we thought I was having a heart issue. D Dimer test was positive but ct found no clots but the lung problems. So I have to wait 3 months to have another ct to see if there’s any changes. But I have a lot of the symptoms
But I believe that might be why I am in the height of my flares more consistently
I am ready for pain meds but I was thinking similar to you.
I only want it for the bad days. The rest is survivable. O don’t want anything more longtwrm. I also have hypothyroidism and it’s intense a lot of my health problems have similiar symptoms
I feel like I will be in a wheelchair one day with my legs and the difficulty holding them up
Sorry so long. I’m just in a place where I feel like I’ve had enough
Not depressed or anything. I have a therapist for talk therapy but I’m not emotionally down. I’m just ready for some kind of relief I guess. I used to build houses,lay sod, CNA furniture refurbished all so many things. Doing so little is more painful then the symptoms sometimes

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I understand about that also, like so many, the changes this all brings. I haven't been diagnosed with fibromyalgia yet, but have multiple other painful conditions, including spinal arthritis that has fused some of my lumbar vertebrae together. Working hard was my everything. And the last 5 years, conditions progressively worsening, my pain and overall well being. I attend therapy once a month. And I am still trying to find the "right" doctor for all of this. You wouldn't believe the amounts and different medications that I've tried, and been afraid to try just this past 2 years. That is what brought me here to do some research, be my own cheerleader. I'm on a waiting list for hydrotherapy, so far waiting 7 months...
Like you wrote, being able to do so little physically adds to the pain even more. I think I picked up my sweet grandbaby 2 days ago, most likely for the last time. I lifted her up above my head, and her beautiful smile just made my day. But I've paid for that moment, most painfully. My spine just feels painfully inflamed. Pretzels. That's my code word for, all the bad words I want to say. I feel like all of this is progressing faster than it should be. I cried last night thinking about not being able to drive, and help my family out as I have been doing. It's a hard moment to accept. But know many others struggle more than I, I am grateful for where I am and what I have today. For the life I've gotten to experience so far.
You are not alone. We are not alone. I am not alone in all of this. Hope for a better quality of life is still there. It just has to be "built under different specifications", with love and self-care. Patience and understanding. Seeing the future as a new path to experience. I never thought I'd be reaching out seeking answers away from where I live, nearly 15 minutes from a top medical research university, but here I am. Hoping Mayo Clinic, and this support info group can be a light in the cloudiness of these times. No one understands our conditions/pains better than ourselves. We most definitely are not alone. I cannot live my life anymore, in the shadows of this misery, without connection and understanding from fellow others. Peace and pain free days be with you, everyone who reads this.

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Profile picture for jlbh @jlbh

I'm 53 yrs. Old, a recovering addict and have such severe (tears rolling down my face) pain, with anxiety, depression, it's gotten to the point where I'm not sleeping but maybe 0-3 hrs. Of interrupted sleep. I don't have a diagnosis yet. I've been researching and it all points to fibro. The e.r.s are a joke where I live and can't get an appt. With a PCP(primary care physician) for 3-4 months. It has become the most unbearable pain I've ever experienced on a night to night basis. Does anyone have any recommendations or ideas to get me help. I'm to the point of relapsing, I have worked to damn hard to go backwards. Desperate in wa. State

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I have fibro and have been fainting occasionally for several years. We haven't found a cause yet. Latest try is checking my heart for some possible occasional electrical activity. Holter monitor, EKG and MRI showed no problems. I have been trying Lyrica and is causing dizziness that requires I sit down. Fainting might follow if I didn't. Used naproxen for years for pain but went off when I had a small digestive system bleed. Searching for new pain relief. Would like to go back on amitriptyline for best sleep and pain control I have ever had. Not recommended for older people but docs are considering. I had some minor spatial hallucinations but knew the weren't real and were short. Recently read that was true for most patients.

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Profile picture for artemis1886 @artemis1886

I am confused in the posting they mentioned nothing about drugs or addiction. Why are you telling them not to pick up? Pick up what?
There are several things that can cause this person’s problems and people reply about addiction. Very Confusing this persons asking for suggestions to medical problems.

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@vcarter20902 is talking about when saying "don't pick up, or back up' is going back to her old ways of being an addict. That's why @vcarter20902 has someone holding onto the pain meds so that it is less likely to take more than needed. @vcarter20902, if I am wrong about this I apologize, I am pretty sure that is what you mean though. If not, again I apologize 😔

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Profile picture for artemis1886 @artemis1886

I am confused in the posting they mentioned nothing about drugs or addiction. Why are you telling them not to pick up? Pick up what?
There are several things that can cause this person’s problems and people reply about addiction. Very Confusing this persons asking for suggestions to medical problems.

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@vcarter20902 is talking about when saying "don't pick up, or back up' is going back to her old ways of being an addict. That's why @vcarter20902 has someone holding onto the pain meds so that it is less likely to take more than needed. @vcarter20902, if I am wrong about this I apologize, I am pretty sure that is what you mean though. If not, again I apologize 😔
P s. Let's all try to get along in these groups, after all we are here to support one another, not to criticize each other's post. Keeping the peace is hard when pain is unbearable, but let's be kind to one another 😁

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