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#651
Jan 23, 2024, 07:33 AM
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The cold and damp really do do a number on us, don't they?
Pain Sucks! Gentle hugs all around ...  ________ I guess I ought to update my status ... I've gone from two canes to a walker. Things were getting quite a bit unsteady on those two canes. I still use them in smaller places around my cottage, but ... Those are spaces where if I start to fall there are plenty of places I can catch myself on. The last thing those two disability doctors told me was to not fall. They said if I fall then it would be over ... Therefore, I'm doing my best to not fall. The walker definitely provides more safety, stability & balance for sure. May Tuesday Be Kind To Us ... 
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 unaluna
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#652
Feb 04, 2024, 04:23 AM
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experiencing quite a lot of stiffness since late friday/ early saturdayI don't think it has anything to do with the cold this time, just the way I rend to sit.. it's not great
that said it has done nothing but rain and thunder, so could be.. |
| Pflowers
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 Pflowers
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#653
Feb 04, 2024, 06:35 AM
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Oh, My!
Could be a flare ... Those tend to come on, often without explanation, and ... Serve only to make an already painful situation even worse! Hope it releases you from its grip soon ...
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| lizardlady
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#654
Feb 09, 2024, 01:26 PM
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Pflowers, been thinking of you lately. My orchids are all putting out bloom spikes and buds. I think of you every time I see them.
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| Pflowers
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#655
Feb 10, 2024, 01:24 AM
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So good to hear from you @lizardlady ...
How delightful ... I hope you can post some pictures when they bloom!
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#656
Feb 10, 2024, 01:08 PM
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Pflower, I've been having trouble posting pics. I may just have to upload to my album.
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| Pflowers
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#657
Feb 10, 2024, 02:44 PM
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#658
Feb 11, 2024, 11:01 AM
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Was doing okay physically until a couple of days ago. Then a fibro flare started.
 Still hurt and have no functional brain cells.How are you doing? |
| Pflowers
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| Pflowers
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#659
Feb 12, 2024, 07:10 AM
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Those flares are bizarre, inexplicable & excruciatingly painful!
I've graduated to a walker ... I detest the thing, but it does provide more stability & steadiness. I just wish it would do something for the pain ... The pain sucks! 
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| lizardlady
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| lizardlady
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#660
Feb 12, 2024, 09:17 AM
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Sending you gentle hugs pflower.
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| Pflowers
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#661
Feb 12, 2024, 11:50 AM
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| Cocosurviving, lizardlady
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#662
Feb 21, 2024, 02:16 AM
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Greetings! It’s been a while. I am still taking things day-by-day. My first rheumatology office stopped accepting health insurance, straight private pay. I recently found a new rheumatologist and she seems very thorough.
July 2023- I was diagnosed with Osteopenia Nov 2023- I was diagnosed with Lupus SLE. In November 2023, I received a positive antinuclear antibody (ANA) test. Then a positive anti-double stranded DNA (Anti-dsDNA). My new rheumatologist is going to double check everything collecting labs and documenting symptoms. My Fibromyalgia has calmed down this week. We have a few warm days. Sent from my iPhone using Tapatalk
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#SpoonieStrong Spoons are a visual representation used as a unit of measure to quantify how much energy individuals with disabilities and chronic illnesses have throughout a given day. 1). Depression 2). PTSD 3). Anxiety 4). Hashimoto 5). Fibromyalgia 6). Asthma 7). Atopic dermatitis 8). Chronic Idiopathic Urticaria 9). Hereditary Angioedema (HAE-normal C-1) 10). Gluten sensitivity 11). EpiPen carrier 12). Food allergies, medication allergies and food intolerances. . 13). Alopecia Areata |
| Pflowers
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| Pflowers
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#663
Feb 21, 2024, 02:30 AM
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I searched for a Lupus Check-In thread. I did not see a thread but I am not sure if it’s worth making a thread. It seems a lot of people on this forum have Fibromyalgia, I’m not sure about Lupus.
I wonder if a lot of people have several unpreventable autoimmune diseases. I have several. Sent from my iPhone using Tapatalk
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#SpoonieStrong Spoons are a visual representation used as a unit of measure to quantify how much energy individuals with disabilities and chronic illnesses have throughout a given day. 1). Depression 2). PTSD 3). Anxiety 4). Hashimoto 5). Fibromyalgia 6). Asthma 7). Atopic dermatitis 8). Chronic Idiopathic Urticaria 9). Hereditary Angioedema (HAE-normal C-1) 10). Gluten sensitivity 11). EpiPen carrier 12). Food allergies, medication allergies and food intolerances. . 13). Alopecia Areata |
| Pflowers
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| Pflowers
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#664
Apr 15, 2024, 09:06 AM
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Hello everyone
I may have posted before.. I have positive ANA and anti thyroid antibodies which my rheumatologist said will most likely never become anything. Also a fibromyalgia diagnosis. I feel as though this needs each symptom to be treated individually. What are your thoughts on gabapentin? I read it can cause depression so I'm scared because I get strange adverse side effects Sent from my SM-A146U using Tapatalk |
| Pflowers
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| Pflowers
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#665
Apr 15, 2024, 02:52 PM
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I'm not very trusting of medications myself as I've had a few adverse reactions in the past.
I've heard mixed reviews on the Gabapentin for pain from members of a psoriatic arthritis group I belong to. I guess it's like anything else, meds work differently for everybody, some have good experiences, others not so much. I do hope you are able to find some kind of relief from the pain though ... Living in constant pain sucks BIG time!
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| Cocosurviving, DeeeSchmeee68, lizardlady
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#666
Apr 15, 2024, 07:55 PM
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Quote:
I tend to be more episodic depending on diet, sleep etc. I'm sorry you have the same reactions to medications too.... Sent from my SM-A146U using Tapatalk |
| Pflowers
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| Pflowers
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#667
Apr 16, 2024, 12:37 AM
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I hope everyone had a decent weekend and Monday. I have a follow-up appointment with my rheumatologist in May, and for now, I have one medication aimed at reducing inflammation.
The previous post asked about medications such as gabapentin. In 2019, I was diagnosed with fibromyalgia. I immediately noticed the type of mediation commonly prescribed. I declined the commonly prescribed medications. I tried one RX of Flexeril and CBD under the direction of my specialist. Flexeril lingers too long in my body. CBD didn’t help at all. My rheumatologist then suggested medical cannabis. I had a good experience with medical cannabis creams, but the jar didn’t last long. I actually learned to roll joints, but I prefer edibles. Edibles helped with sleeping through the night. I’m changing occupations and surrendered my medical cannabis license earlier this year. All in all, I try to take medication only when I feel it’s necessary; there are no other options, and it helps. I take one medication for my thyroid, one for inflammation that might be Lupus-SLE, and two injections for a rare illness. I take a lot of vitamins since I am immunocompromised. Me and my teenage son take walks in the evening. I make sure to apply sunscreen in the morning, reapply in the evening, and apply mosquito repellent. My pain has reduced, and I make sure to regularly stretch. I experienced muscle spasms a few times last week. I also drink a lot of water. I struggle with avoiding sweets, but I’m not giving up. Last summer, I took a trip, and my healthy eating habits took a nose dive. I am determined to turn things around. Yesterday, I noticed signs of depression. A big telltale sign for me is procrastination: not making my bed, dishes piling up in the sink, dirty clothes on the floor instead of the hamper, etc. Sent from my iPhone using Tapatalk
__________________
#SpoonieStrong Spoons are a visual representation used as a unit of measure to quantify how much energy individuals with disabilities and chronic illnesses have throughout a given day. 1). Depression 2). PTSD 3). Anxiety 4). Hashimoto 5). Fibromyalgia 6). Asthma 7). Atopic dermatitis 8). Chronic Idiopathic Urticaria 9). Hereditary Angioedema (HAE-normal C-1) 10). Gluten sensitivity 11). EpiPen carrier 12). Food allergies, medication allergies and food intolerances. . 13). Alopecia Areata |
| Pflowers
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| DeeeSchmeee68, Pflowers
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#668
Apr 19, 2024, 02:58 AM
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My week has been decent pain wise. Our weather is changing from hot to fall (cool temps). I make sure to take water when running errands.
My place looks better: dishes washed, and dirty laundry off the floor. I plan to clean both restrooms this weekend. One today or Saturday and the second restroom on Sunday. I’m returning to college for a second degree in the fall. I also plan to work part-time. This weekend will be very busy to say this least. My son grandson is spending the weekend with me and my son. My son is a high school senior and definitely inherited my tendency to volunteer with multiple organizations. This weekend he has volunteer commitments and a birthday party to attend. I’m applying for scholarships this weekend and being a taxi mama. Sent from my iPhone using Tapatalk
__________________
#SpoonieStrong Spoons are a visual representation used as a unit of measure to quantify how much energy individuals with disabilities and chronic illnesses have throughout a given day. 1). Depression 2). PTSD 3). Anxiety 4). Hashimoto 5). Fibromyalgia 6). Asthma 7). Atopic dermatitis 8). Chronic Idiopathic Urticaria 9). Hereditary Angioedema (HAE-normal C-1) 10). Gluten sensitivity 11). EpiPen carrier 12). Food allergies, medication allergies and food intolerances. . 13). Alopecia Areata |
| Pflowers
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| Pflowers
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#669
Apr 19, 2024, 03:34 AM
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I came across this topic on another thread: Fibromyalgia misconceptions and myths.
My experience: I have tender points, experience muscular knots and muscle spams etc. I have a hard time taking written notes and usually have to type out my notes. I’ve tried mechanical pencils and added cushions to my ink pens. I plan to purchase a keyboard for my iPad to make typing easier. As far as meds and treatments: •Early on I tried a steroid injection once and it hurt way too much. I also know long term use can result in bone deterioration. •I tried Flexeril it was too strong and lingered. My rheumatologist then recommended CBD and did a good job of creating a titration schedule but it didn’t help. •Next I was recommended (same provider) medical cannabis. I prefer gummies and I could sleep through the night like a baby. •I knew early on that medication and/or medical cannabis would not be my only solutions. My only health insurance is Medicare, which does not cover acupuncture or chiropractor visits (for Fibromyalgia). Luckily in my area massages are not expensive. We have a decent amount of massage businesses to select from. •I also have a YMCA membership and find deep tissue yoga helpful for my overall health, mental clarity and to loose my stiff/achy joints. I read a lot of articles from national fibromyalgia and arthritis organizations. My Mighty has good articles too and I like that they publish articles written by individuals with disabilities and chronic illnesses. Sent from my iPhone using Tapatalk
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#SpoonieStrong Spoons are a visual representation used as a unit of measure to quantify how much energy individuals with disabilities and chronic illnesses have throughout a given day. 1). Depression 2). PTSD 3). Anxiety 4). Hashimoto 5). Fibromyalgia 6). Asthma 7). Atopic dermatitis 8). Chronic Idiopathic Urticaria 9). Hereditary Angioedema (HAE-normal C-1) 10). Gluten sensitivity 11). EpiPen carrier 12). Food allergies, medication allergies and food intolerances. . 13). Alopecia Areata |
| Pflowers
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| Pflowers
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#670
May 05, 2024, 06:38 AM
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Last week, I signed up for Ticket-to-Work through the Social Security Administration. My youngest son turns 18 this month, and my income will change. I need to at least work part-time. I am happy to report that my new HAE injection treatments seem to be working. My HAE attacks have slowed down a lot. I received hospital bills from my last few HAE attacks. Working will help me get them paid off.
I have an assigned vocational case manager. We had a phone conversation this week and discussed resumes. I have been dealing with a lot of anxiety over how to explain the gap in my employment history. My case manager explained that I should list volunteer work and explain during interviews that I took time off to raise a family. My kids are all grown, and I am returning to work. Being disabled is very hard, and I understand that it varies greatly from person to person, depending on the type of disability (disabilities) in addition to the severity. I have a very close relationship with my youngest son, and that’s mainly because I started receiving SSDI when he was in fourth grade. He’s a senior in high school, and I still take him to school and pick him up. I have been able to attend all his school events, band concerts, band competitions, open house events, and parent-teacher conferences. I participated in school carnivals, bake sales, and helped chaperone events. I dropped him off and picked up him and his classmates. I found a few articles that discuss returning to the workforce. I hope others find the articles helpful too. •Stay-at-home-mom valuable transferable skills. Just a moment... •Finding a job/reentering the workforce after being a stay-at-home-mom. Just a moment... •Finding a job/reentering the workforce after a long absence. Just a moment... Sent from my iPad using Tapatalk
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#SpoonieStrong Spoons are a visual representation used as a unit of measure to quantify how much energy individuals with disabilities and chronic illnesses have throughout a given day. 1). Depression 2). PTSD 3). Anxiety 4). Hashimoto 5). Fibromyalgia 6). Asthma 7). Atopic dermatitis 8). Chronic Idiopathic Urticaria 9). Hereditary Angioedema (HAE-normal C-1) 10). Gluten sensitivity 11). EpiPen carrier 12). Food allergies, medication allergies and food intolerances. . 13). Alopecia Areata |
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#671
May 05, 2024, 07:06 AM
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Over the last two weeks, I have tried to donate blood to the Red Cross twice. Each time, my iron was too low. I reached out to my primary physician to report and explain other symptoms. I was struggling with fatigue and procrastination, and I could feel myself slipping into depression. My primary physician ordered labs and said low iron could trigger my depression. I’ve been eating foods containing iron and hope to not need another vitamin or supplement. I learned that iron is not part of the usual autoimmune disease lab panel. I don’t understand why, since vitamin deficiency is very common among people who have immune diseases, such as myself. The standard lab panel checks for vitamin deficiencies except iron deficiency.
Sent from my iPad using Tapatalk
__________________
#SpoonieStrong Spoons are a visual representation used as a unit of measure to quantify how much energy individuals with disabilities and chronic illnesses have throughout a given day. 1). Depression 2). PTSD 3). Anxiety 4). Hashimoto 5). Fibromyalgia 6). Asthma 7). Atopic dermatitis 8). Chronic Idiopathic Urticaria 9). Hereditary Angioedema (HAE-normal C-1) 10). Gluten sensitivity 11). EpiPen carrier 12). Food allergies, medication allergies and food intolerances. . 13). Alopecia Areata |
| Pflowers
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#672
May 12, 2024, 02:13 AM
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This week, I had two interviews. The second was the best fit, and I accepted the job offer. I’m waiting for my background check to clear.
My pain has been good this week. I did well this week by avoiding eating out and reducing sweets. I have been consistently drinking water. Sent from my iPhone using Tapatalk
__________________
#SpoonieStrong Spoons are a visual representation used as a unit of measure to quantify how much energy individuals with disabilities and chronic illnesses have throughout a given day. 1). Depression 2). PTSD 3). Anxiety 4). Hashimoto 5). Fibromyalgia 6). Asthma 7). Atopic dermatitis 8). Chronic Idiopathic Urticaria 9). Hereditary Angioedema (HAE-normal C-1) 10). Gluten sensitivity 11). EpiPen carrier 12). Food allergies, medication allergies and food intolerances. . 13). Alopecia Areata |
| Pflowers
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| Pflowers
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#673
Jul 30, 2024, 12:40 PM
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We've talked about so called "cures" for fibro in the past. Just heard this one. I don't know to laugh or scream about this.
Person is claiming to cure fibro through 40 days of fasting, only allowed to drink fruit juice. Oh, I forgot to add she only charges $2,200 to help cure you! 
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| Pflowers
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| Pflowers
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#674
Jul 30, 2024, 02:11 PM
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I don't know which is worse, the medical community itself or all these snake oil salespeople!
Don't trust any of 'em as far as I could throw 'em ... Which isn't very far! 
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| lizardlady
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#675
Aug 05, 2024, 01:00 PM
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We've been dealing with a tropical storm the last few days. Changes in barometric pressure has my fibro going crazy. I have no functional brain cells with the fibro fog. Pain level is off the charts. Whine, whine, whine...
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| Pflowers
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| Pflowers
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My Support Forums is the online community that was originally begun as the Psych Central Forums in 2001. It now runs as an independent self-help support group community for mental health, personality, and psychological issues and is overseen by a group of dedicated, caring volunteers from around the world.
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