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Living With Fibromyalgia - Online Support Group

Good Morning

Good morning. I’m new here and have been reading posts and will continue reading so that I hopefully don’t repeat questions. I am not really used to talking much about my experiences because like others I have just been trying to keep going and I haven’t really had anyone to talk to with similar problems. After I read more, I may ask some questions. Hope everybody has the best day they can. :slight_smile:

Hi @gonzalezcook!

Good afternoon! I am just reading your post as I’m more a late in the day kind of person. Welcome to Ben’s Friend’s! There are a lot of different posts on here of many different subjects related to fibromyalgia. I was diagnosed about 10 years ago and I’m 38. Everyone here has a lot of the same symptoms and it’s really a good place to chat with people who know exactly how you feel. I have found you really can’t chat with someone who has never had fibro or any other medical illnesses because they don’t understand.

You are more than welcome to ask as many questions as you want regardless if you’ve asked before or others have. We don’t judge lol.

For me I have always been able to talk to people about how I’m feeling because I’ve had illnesses since I was a teen. A lot of people are more comfortable with typing to individuals who understand where they are coming from rather than verbalizing and that’s one of the great things about this site. I have been on here for over a year and now help moderate the site when I can.

I hope your day has been great. I have had a sore week myself and today I’m feeling a bit better. It’s challenging having this disease and on top of Covid it has become very dull and frustrating which I’m sure you can relate to. Enjoy the rest of your day and stay healthy and safe!

Davey

Thank you for responding. It always takes me a while to get going in the morning too. I agree that it’s sometimes easier to type things than say them. I am very happy to have found a place to talk with others who understand.

I think I was diagnosed about 5 years ago but didn’t really take it seriously because I thought it was just what doctors tell you you have if they don’t know what else to say you have… kind of like my IBS which I’ve had since a teen, but wasn’t diagnosed with til about 10 years ago. So far I haven’t noticed anyone mention having IBS too. Have you heard of a connection between the two?

I wondered if anyone has tried diet changes. I have tried some changes for the IBS that seemed to help for a while, but then I just go back to the same issues. I read something (not sure it was a reputable place) about inflammation and sugar. Has anyone heard of that?

I will continue reading other posts. It has been so interesting seeing that others have similar symptoms to me that I never related to the fibromyalgia.

It was a GP that listed fibromyalgia in the summary of my visit, but didn’t talk to me about it. I just noticed it later. I didn’t think I really had it because I don’t have the specific areas that are supposed to be so sensitive to touch like I thought was central to the diagnosis. Is there a certain kind of doctor that is recommended for follow up?

Thank you again. Glad you are feeling better today.

Hi @Gonzalezcook,

I try to respond if I can. I think everyone deserves to be listened to. :slight_smile: I was diagnosed 10 years ago and I am lucky to live in Massachusetts where rheumatologists understand a little bit more about Fibromyalgia than other states. I really haven’t noticed many complains with IBS but I do know a lot of people have tried different food restrictions but every person is different. It’s a bit of detective work to try to figure out what works for you. I personally haven’t tried to diet with anything. Fast food always makes me feel worse but I think it’s a given for anyone. There is no definite answers on here as to what works. The world still doesn’t understand Fibromyalgia.

Kinda strange your GP put that in your file without talking to you about it. Sensitive to touch is very vague. For me I don’t have a sensitive of touch however I can’t have others touch areas of my neck or back because it hurts however if I were to put my fingers in the same spot I don’t have a problem. Depending where you live depends on what kind of doctor. Usually a Rheumatologist is suppose to diagnose you with it but in certain states GP’s diagnose it but have no clue what it really is. My Rheumatologist did a visual examination and touched certain spots of my body to determine if I had fibro. In my state my GP referred me to a Rheumatologist who diagnosed me. Others have been in states that the GP has said you may have it but not refer you to a Rheumatologist because the Rheumatologists in that area don’t diagnosed fibromyalgia patients. I would keep reading on the posts to see what others have posted. The world really just hasn’t had enough studies on fibromyalgia to really help us. There is a lot of information on this site.

I can’t tell you what you to do but I would recommend checking back with the GP and see what they think. :slight_smile: Thank you for your feeling better comment. I hope you are doing great.

Talk soon!

David

Hey there, gonzalezcook! Welcome here, we’re glad that you found us.

You said in your profile that your hands hurt. Have you had a rheumatologist check you over? IBS always makes me think of autoimmune issues, and Rheumies are the ones who know the most about those.

All the best to you! I hope you find this a good place to share and discuss. Don’t forget, you are anonymous here, and only members can see your profile. We pride ourselves on keeping our communities safe and supportive.

Seenie

This is actually a great point because my hands bother me all the time. I have hyperflexibility meaning my arms, hands, legs have flexibility going the wrong way lol. So my hands can bend backwards, and my arms bend outwards. My Rheum told me that causes pain. I’m like, ya don’t say lol.

Davey

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No, I haven’t been to a rheumatologist because my blood work doesn’t show like I need it. I haven’t had any tests for inflammation for a few years so I will see about that soon. Any suggestions on the type of bloodwork I should request. I imagine it’s more than just the regular bloodwork most people have done. My GP is very accommodating when I request things but isn’t very proactive.

The hyper flexibility does sound like it owuld be painful. :(. I don’t have any hyperflexibility (my daughter does) except in my big toes which is irritating when trying to walk for exercise. I’ve been told I have osteoarthritis in my neck and probably my shoulders which I understand is from overuse. I have tennis elbow in my right elbow and have had “trigger finger” issues.

I have spent a lot of time just thinking these things were part of getting older or being a hard worker. But I think I feel worse than my Mom at this point. Sleeping is really difficult and I put it off because I always feel so bad when I get up. I take a hot shower, do neck and back stretches, take Advil and coffee and then by lunchtime I start feeling a little better.

Thanks so much for the conversation. Hope you have a good day/night.

Hi again!

I’m not sure what to ask on the blood work because there isn’t a blood test that’s going to prove you have fibro. It’s a physical examination where a rheumatologist usually try’s to lightly bend your arms and legs and touch spots on your body that have been known to be painful of fibro. It’s a clinical assessment. Does your GP listen to you? If you asked them to refer you to a rheumatologist would they do that for you? Not everyone has hyper flexibility that’s just a part of me that causes pain.

Sorry I’m looking at this and typing through my phone. Just re-read about your GP. You could ask her to refer you to a rheumatologist to get that second opinion. It wouldn’t hurt. I have had a great GP. The GP I had before made me so frustrated. It’s important to find a doctor who listens and offers advice. If you saw a rheumatologist and you get the diagnosis of fibro then they may offer you a medication like Lyrica or Gabapentin.

Very importantly, our minds are always thinking its age related. At least in my experience of knowing a lot of people and talking to people who have been sick. Listen to your body. You know how you feel and it’s important if you feel like something is different , try to get those answers like you are doing here. We don’t want to tell you what to do as I mentioned before but we have some ideas on here. Don’t give up! I am hoping you get answers soon. I really do what state do you live in? I forgot. I’m in Massachusetts.

Talk soon
Goodnight!

Dave

Hi again. I am in Georgia. I think I saw someone else from the Atlanta area with very similar symptoms to mine.

I am starting a list of questions for my doctor and visited a website that someone mentioned about a study for a Fibro bloodtest (www.fmtest.com). Sounds interesting, but I guess still in the testing phase. I filled out the info as a patient and will ask my doctor about that too.

I will ask for a referal to a rheumatologist. After hearing about problems with Lyrica and Gabapentin, I don’t think I’m interested in that so far. I am taking to heart other people’s ideas about heat and magnesium and will look into the muscle relaxer for help sleeping. I’m very glad to have found this site.

One more question…many mention severe pain. I am in no way minimizing anyones pain… One reason I have doubted my diagnosis from the beginning is that I wouldn’t say my pain is severe, just tiring and irritating. It is definitely worse then when I was first diagnosed and constant and all over my body, but I can still walk for exercise and do most things if I am careful. Can I assume that people’s perception and/or tolerance of pain is different? Any thoughts?

Thanks so much for your interest.

Hi, gonzalezcook!
I’m new to the site, but not new to fibromyagia & arthritis pain. I think your comments about pain are insightful. Is it possible that, because you are still exercising and keeping in motion, your pain is not what you would consider “severe”? It sounds like you listen to your body - You mentioned that you are careful. Perhaps, you aren’t experiencing fibromyalgia “flairs,” which would be awesome. But, I do believe that having daily “tiring & irritating” pain can still wear a person down and have emotional effects. If I have a string of “good” days, with my pain at a level 2 or 3 (on a level 10 scale), it will still exhaust me after a while, and I may need to spend a day or two in bed, resting.
And, I do believe that people’s perception and/or tolerance of pain is, indeed, different. Each person will, most likely, base their perception on what they have experienced in the past. A nurse once told me that she observed that women who had experienced child birth, in their past, often listed their pain as a low number (on the 1 to 10 scale), while others, who had not experienced terrible pain, might give a much higher number. This is not to say that women experience worse pain then men - Both my ex and my son have suffered through kidney stones, which I’m sure is every bit as painful as childbirth…
Also, for what it’s worth, I’ve used Gabapentin for many years, and it does help me, although Lyrica is not compatible with some of the meds I’m on, so I haven’t tried it.

I’m glad to meet you, gonzalezcook, and wish you a lovely day. Keep hanging in there!

Thanks so much. It’s nice to have someone validate an idea that you have but are not sure is correct. Thank you too for your experience with Gabapentin. I think my husband has taken that before for back pain.

My family (Parents and Sibs) are very active and hardworking physically and I used to be too. My parents are always telling me I need to lose weight and walk longer or faster to accomplish that. While I am just doing my best at the pace I’m going. It is very hard to take the pain/tiredness seriously and not think I am just being a whimp compared to them. They are of course older and have some issues but are still able to weed for hours, chop wood, help my brother build his house (we all live on the same street)… and I don’t feel capable of that anymore. I feel tired just doing my daily chores and walking my “slow” 10,000 steps a day. Scrubbing the tub made my shoulders and arms ache for days which also leads to dizziness.

It’s so “nice” to hear that others understand. Although I of course hate that others have to deal with these issues too.

I hope to visit the doctor in the next month or 2 (it’s still not open) to see if I can find out any more with bloodwork and possibly try a muscle relaxer.

Very nice to meet you too and I hope you have a lot of good days!

Hi, again!
I take Baclofen muscle relaxer. I’m supposed to take 3 X a day, but only take morning and evening through the work week, or I will fall asleep at the computer! (We do have to listen to our bodies, despite what the doc prescribes!) Of course, there are many other good muscle relaxers out there. You just have to find what works best for you.

Please (of course, kindly) do your best to make your family realize that you have a condition that is out of your control and to understand that you could become sicker if you overdo. Pushing you to lose weight??? My hubby doesn’t even do that, and I gained several lbs after getting on my meds. Losing weight will be a long process for me. What makes it worse is that I was always small to med. weight until I became ill. People just don’t understand. We don’t “look” sick, so why aren’t we better, faster, etc. than we are? Sad, but it is our reality.
My folks both had to be put in a memory care facility with Alzheimers, prior to their deaths, and when I have fibro-fog, which includes short-term memory loss, it scares me. I often think, Is it really my fibromyalgia, or is it early on-set Alzheimers? Often, stopping mid-sentence because I can’t remember someone’s name or what a thing is called is very embarrassing. Believe me, if you haven’t experienced it, it can make you feel crazy. My hubby is used to it now, and just waits until I get the words out, if I’m having a bad day. This can be a cruel condition, but we can only do our best, and, as a very sweet lady on the site, here, says BE GENTLE WITH OURSELVES. :upside_down_face:

Thanks so much. I do have the trouble with finding words… sometimes it’s easier to just describe the thing instead of finding the word. That’s so great that your husband just waits for you. Mine takes over or prompts me and that’s is so frustrating. :slight_smile:

So sorry about your parents. I know it must be difficult.

Thank you. It was super hard when Mom and Daddy would beg me to take them home from that “awful place,” and yell at me when I wouldn’t. But, then, the next visit they would think they were at a resort, and wouldn’t I like to come join them on their trip? My daddy lived several years after my mother died, but, unable to remember that she passed, he would call me and ask “Do you know where your mother is?” My precious father had to experience her death over and over until finally one day I found a note in his room, that he had written to himself, saying that Eve died on (date) from heart failure. To me, he was still such an intelligent man, to have written & saved that reminder. Then, I think because he had had my mom at his side for over 60 years, and missed her dearly, he chose a lady, with not much of her mind left, and pretended that she was his wife. (Thankfully, this only lasted a few months.)
It is a blessing that only God knows the future, and the Bible tells us in Matthew 6:34: Refuse to worry about tomorrow, but deal with each challenge that comes your way, one day at a time

Davey - as I’m sure you already know, fibromyalgia is often a diagnosis of exclusion. But if you have hypermobile joints, that may be the primary issue, and the “widespread pain” used to diagnose fibro may be because of the hypermobiliity. Have you ever had a workup for this?

I have a friend who’s 21 years old, and is just now going through the diagnostic workup for Ehler Danlos Syndrome. She’s had pain for many years, as well as dislocations. The clinic in my area required her to get a cardiac workup before they would take her on as a patient, and sad to say, it looks like they have found cardiac involvement. It’s not JUST joints for many people.

Sharon from ModSupport

Good advice for sure.

Seenie from ModSupport

I feel like I interrupted this great conversation. My apologies. This is a really great conversation.

Getting support is so important, whether it’s here or at home. I love what @AussieMom said here, about being gentle to ourselves. It’s so important.

Sharon from Mod Support

Hi, Sharon!
You did not interrupt anything - On the contrary, you added something very important with the great advice for Davey. I have always had hyper-mobility in my hands and do believe it has added to my pain. The hand specialist that did my thumb joint replacements told me that it is NOT a good thing to have…
I looked up Ehler Danios Syndrome and it sounds like a terrible condition. Your friend is so young to have to suffer this way.

Which sweet lady is that? Why not t@g her so that she can join in on the conversation?

I’m thinking (which is always dangerous, LOL):

I’ve been told I have osteoarthritis in my neck and probably my shoulders which I understand is from overuse. I have tennis elbow in my right elbow and have had “trigger finger” issues.

@gonzalezcook, you know, that’s a lot of tendon “stuff”. You say you haven’t been to a rheumatologist because your blood work is OK. There are several rheumatology issues that don’t necessarily show in bloodwork, though. (I have one … took 20 years for someone to figure it out.) I think I’d be asking my GP for a referral to a rheumatologist. JMHO.

What a nice thread this is!

Seenie from ModSuport

Hi, Seenie :slightly_smiling_face:
Not sure how to “tag” but the beautiful mantra BE GENTLE WITH YOURSELF is from N8TRULUVR.